This is a survey about what the process of getting an autism diagnosis is like, including suspecting one has autism before or without being diagnosed. For example, what made you or other people suspect you have autism? What prevented you from being diagnosed sooner?
This is a survey to understand what the process of getting an autism diagnosis is like, including suspecting one has autism before or withou
Meltdowns, Shutdowns, Burnouts, Autistic Catatonia, and Late Regression
This is a survey about how autistic people experience what they or their doctors label meltdowns, shutdowns, autistic burnout, autistic catatonia, and late autistic regression. For example, what do people experience while having a meltdown? How frequently do they shutdown? What causes them to burn out?
This is a survey to understand how autistic people experience what they or their doctors label meltdowns, shutdowns, autistic burnout, autis
Autism and Gaps in Support Needed Versus Received
This is a survey about gaps in the type and amount of support that people with autism need versus what they receive. For example, how often do people need support with getting, preparing, and eating food? How often do they actually get that support? What happens if they don't get the support that they need?
This is a survey to understand gaps in the type and amount of support that people with autism need versus what they receive. This survey is
Autistic Masking
This is a survey to understand what autistic people do that they consider masking. For example, what types of masking are autistic people usually able to do or unable to do? Who do they mask with? How easy or hard is masking for them?
This is a survey to understand what autistic people do that they consider masking. This survey is just for fun, not research! You're allowed
Autism and Food Preferences
This is a survey to understand what people with autism like, dislike, seek, or avoid in foods. For example, what textures do autistic people like or dislike? What diets do they follow or what foods do they have to avoid for health reasons? How often do problems eating cause physical health, social, or mental health problems?
This is a survey to understand what people with autism like, dislike, seek, or avoid in foods. This survey is just for fun, not research! Yo
Autism Support Needs Definitions
This is a survey to understand how people define autism-related support needs and if this differs based on the individual's support needs. For example, what makes someone have low support needs autism? What traits are common in people with high support needs autism? What is does it mean to have LSN autism and MSN overall?
This is a survey to understand how people with autism define autism-related support needs, and if this differs between people depending on t
Previous Surveys
Support Needs Labels
What do people mean when they use support needs labels?
Response Summaries: Low Support Needs | Low-Moderate Support Needs | Moderate/Medium Support Needs | Moderate-High or High Support Needs | First 499 Responses
Independent Living
How well can autistic people live independently, and what makes it harder for some autistic people?
Response Summaries: Overall | By Diagnosis | By Support Needs Label | Over Age 25 | Final Summary
Autism and Language
How do autistic people use and understand language?
Response Summaries: Overall | By Diagnosis | By Support Needs Label | By Language Group
Autism and Birth Circumstances
What are birth circumstances (such as birth timing, weight, and complications) like for autistic people?
Response Summaries: First 70 Responses | Final Summary
Special Interests
What interests are most common, and how do people engage with them?
Response Summaries: First 57 Responses | Final Summary
Community Engagement
What types of online and offline autism communities do autistic people participate in? What do they think of these communities? How diverse are these communities?
Response Summaries: First 57 Responses | Final Summary
Autism and Presentation "Types"
How well do autistic people fit different proposed autism presentations? Does autism really look different in women and men?
Response summaries: First 68 Responses | Final Summary
Stimming, Fidgeting, and Other Repetitive Movements in Autism and ADHD
What repetitive movements are most common in autism or ADHD? How does having both autism and ADHD change this?
Response summaries: First 89 Responses | By ADHD Medication | By ADHD Status | By Autism Status | Final Summary
Frequently Asked Questions
I have an idea for a survey. Will you make it?
Send me an ask, and I'll consider it!
Why are you doing these surveys?
They're just for fun! I'm an autism researcher as my actual job, but these aren't formal research. I just like seeing the results, and I know others like seeing the results too!
I want to take one of the surveys, but I don't want to answer a question about [X].
That's fine! Any question can be skipped.
Are these surveys anonymous?
Yes, the surveys are fully anonymous. None of them collect identifying information. I only report data on a group-level so that no one can be recognized by their responses.
Why do you ask the questions about sex and gender that way?
This is the best practice for how to ask about sex and gender! Asking about assigned sex at birth is often relevant to autism research, and it helps to show if a sample reflects the community it's taken from. However, knowing someone's gender identity is also very important! I ask about that separately for a few reasons: a) someone can skip the assigned sex question and only answer the gender question if they want to, b) someone can indicate if they're trans by how they answer both the assigned sex and gender questions, and c) both assigned sex and gender can be used to understand what type of autistic people the survey is reaching!
I ask about gender as only four categories (man, woman, nonbinary or other, and "don't know") for privacy. If I let people write their specific gender identity, that could be identifying information if it's a very uncommon response. This keeps people anonymous!
I don't usually ask about intersex status because a major intersex advocacy organization (interACT) recommends asking about that separately from assigned sex and gender, and it's potentially sensitive medical information that isn't always relevant.
None of the responses on a question are a good fit for me, or a list of options is missing something I want to choose.
Every survey has a free response question at the end. Please feel free to add more information there!
Can I reblog these surveys or share them somewhere else to get more responses?
Support Needed and Received Across Self-Identified OVERALL Support Need Levels in Autistic Adults
This post is comparing data from my survey on autism and support needs, which is still accepting responses from autistic individuals of all ages:
This is a survey to understand gaps in the type and amount of support that people with autism need versus what they receive. This survey is
Of 133 respondents, 98 are adults age 19 or older; of these, 34 (35%) have overall low (LSN) or low-moderate (LMSN) support needs; 36 (37%) have overall medium/moderate (MSN) support needs; and 28 (29%) have overall moderate-high (MHSN) or high (HSN) support needs.
This post is best read as a companion to my summary of autism-specific support need levels. Most notably, individuals reporting that their overall support needs are MSN or HSN consistently report needing help with fewer tasks and needing less frequent help than individuals who say that their autism-specific support needs are MSN or HSN. Likewise, those with overall MSN or HSN report receiving help with fewer tasks and receiving less frequent help than individuals who say that their autism-specific support needs are MSN or HSN. This includes less use of assistive or adaptive technology and less support from caregivers, professional support staff, or service animals. Finally, those with overall MSN or HSN were less likely to suffer serious consequences from not having help compared to individuals who say that their autism-specific support needs are MSN or HSN. This implies that individuals might have stricter cutoffs in mind for what makes autism MSN or HSN compared to their mental cutoffs for other disabilities.
Conversely, identifying as MSN or HSN overall was related to reporting a higher number of co-occurring mental health and physical health comorbidities (although a relatively lower number of neurodevelopmental comorbidities compared to those with HSN autism). Eating disorders were the only specific mental health disorder that predicted HSN overall but not HSN autism. Physical health was an even stronger predictor, with many comorbidities (e.g., neurological disorder or injury, gastrointestinal disorder or injury) emerging as much higher in those with HSN overall compared to all other groups.
(Under a read more due to length)
Support Needed
Types of Support
There was a clear gradient such that in almost all cases, increasing support needs indicated an increased need for support with any given task.
Across 13 unique tasks for food and drinks, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (help cleaning up) to 67% (meal planning), with an average of 28% (SD: 19%). MSN ranged from 0% (eating or drinking) to 83% (shopping), with an average of 37% (SD: 25%). HSN ranged from 18% (eating or drinking) to 89% (shopping and meal planning), with an average of 57% (SD: 19%). Additionally, 21% of LSN, 36% of MSN, and 57% of HSN needed help with every step of getting and preparing food, and 9% of LSN, 11% of MSN, and 46% of HSN needed help with every step of getting and preparing drinks.
Across 12 unique tasks for grooming and hygiene, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (washing hands and using the restroom) to 29% (cutting hair), with an average of 11% (SD: 11%). MSN ranged from 0% (using the restroom) to 61% (cutting hair), with an average of 22% (SD: 17%). HSN ranged from 32% (washing hands) to 71% (knowing what clothing to wear for the weather), with an average of 54% (SD: 14%).
Across 19 unique tasks for health and safety, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (using a medical device) to 74% (managing doctors), with an average of 31% (SD: 21%). MSN ranged from 3% (using a medical device) to 89% (managing doctors), with an average of 45% (SD: 25%). HSN ranged from 21% (not misusing drugs or alcohol) to 100% (scheduling appointments), with an average of 70% (SD: 20%).
Across 13 unique tasks for managing a home, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 29% (dusting) to 65% (home repairs), with an average of 47% (SD: 10%). MSN ranged from 47% (putting away clutter and avoiding hoarding) to 83% (planning what to clean when), with an average of 63% (SD: 9%). HSN ranged from 39% (avoiding hoarding) to 100% (home repairs), with an average of 80% (SD: 15%).
Across 13 unique tasks for being in the community, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 0% (not eloping) to 68% (managing unexpected situations), with an average of 24% (SD: 18%). MSN ranged from 19% (not eloping) to 75% (managing unexpected situations), with an average of 42% (SD: 19%). HSN ranged from 50% (accessing a rideshare and not eloping) to 89% (managing unexpected situations), with an average of 70% (SD: 12%).
Across 10 unique tasks for managing finances, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 18% (understanding money) to 59% (paying taxes), with an average of 44% (SD: 12%). MSN ranged from 39% (understanding money) to 83% (getting or managing government benefits), with an average of 59% (SD: 13%). HSN ranged from 64% (not spending too much) to 96% (getting or managing government benefits and paying taxes), with an average of 83% (SD: 12%). Additionally, 53% of LSN, 50% of MSN, and 71% of HSN needed to be given money or things they can't afford.
Across 15 unique tasks for socializing, the percentage of adult LSN respondents that needed or would strongly benefit from support ranged from 12% (having a healthy marriage and raising children) to 74% (setting boundaries and saying no), with an average of 41% (SD: 19%). MSN ranged from 20% (having a health marriage) to 89% (setting boundaries and saying no), with an average of 57% (SD: 21%). HSN ranged from 7% (raising children) to 100% (setting boundaries or saying no), with an average of 72% (SD: 27%).
Across all domains, reminders would be strongly beneficial for 32-50% of LSN adult respondents; 37-78% of MSN; and 37-89% of HSN.
Across all domains, prompts would be strongly beneficial for 21-35% of LSN adult respondents; 23-64% of MSN; and 48-82% of HSN.
Across all domains, no support was needed for 0-29% of LSN adult respondents; 0-6% of MSN; and 0-4% of HSN.
Frequency
For food and drinks, the percent of adult respondents that needed or would strongly benefit from support daily or more was 30% of LSN, 67% of MSN, and 86% of HSN. The percent that needed support once a week or less was 36% of LSN, 6% of MSN, and 4% of HSN.
For hygiene and grooming, the percent of adult respondents that needed or would strongly benefit from support daily or more was 18% of LSN, 33% of MSN, and 86% of HSN. The percent that needed support once a week or less was 50% of LSN, 19% of MSN, and 4% of HSN.
For health and safety, the percent of adult respondents that needed or would strongly benefit from support daily or more was 15% of LSN, 44% of MSN, and 86% of HSN. The percent that needed support once a week or less was 56% of LSN, 44% of MSN, and 7% of HSN.
For managing a home, the percent of adult respondents that needed or would strongly benefit from support daily or more was 33% of LSN, 47% of MSN, and 80% of HSN. The percent that needed support once a week or less was 40% of LSN, 6% of MSN, and 0% of HSN.
For being in the community, the percent of adult respondents that needed or would strongly benefit from support daily or more was 3% of LSN, 28% of MSN, and 52% of HSN. The percent that needed support once a week or less was 55% of LSN, 22% of MSN, and 4% of HSN.
For managing finances, the percent of adult respondents that needed or would strongly benefit from support daily or more was 6% of LSN, 14% of MSN, and 52% of HSN. The percent that needed support once a week or less was 71% of LSN, 43% of MSN, and 22% of HSN.
For socializing, the percent of adult respondents that needed or would strongly benefit from support daily or more was 9% of LSN, 32% of MSN, and 60% of HSN. The percent that needed support once a week or less was 53% of LSN, 26% of MSN, and 12% of HSN.
Across domains, LSN were most likely to need help once a week or less (39%) or never (13%). MSN were most likely to need help daily or more (37%) or multiple times a week (26%). HSN usually needed help once a day (24%) or multiple times a day (48%).
Support Received
Types of Support
There was a clear gradient such that in almost all cases, increasing support needs indicated increased reception of support for any given task.
Across 13 unique tasks for food and drinks, the percentage of adult LSN respondents that received support ranged from 0% (understanding how to stay hydrated and not overeating or binge eating) to 40% (shopping), with an average of 13% (SD: 13%). MSN ranged from 0% (understanding how to stay hydrated and eating or drinking) to 67% (shopping), with an average of 19% (SD: 20%). HSN ranged from 7% (not overeating or binging and help eating or drinking) to 82% (shopping), with an average of 39% (SD: 20%). Additionally, 15% of LSN, 25% of MSN, and 50% of HSN received help with every step of getting and preparing food, and 6% of LSN, 6% of MSN, and 25% of HSN received help with every step of getting and preparing drinks.
Across 12 unique tasks for grooming and hygiene, the percentage of adult LSN respondents that received support ranged from 0% (most tasks) to 24% (knowing what clothing is socially appropriate to wear), with an average of 4% (SD: 8%). MSN ranged from 0% (washing hands, using the bathroom, changing into clean clothing, and wearing deodorant) to 31% (cutting hair), with an average of 8% (SD: 10%). HSN ranged from 11% (washing hands) to 54% (knowing what clothing to wear for the weather), with an average of 30% (SD: 15%).
Across 19 unique tasks for health and safety, the percentage of adult LSN respondents that received support ranged from 0% (exercising enough, not getting hurt exercising, not hurting themselves stimming, not hurting themselves sensory seeking, and using a medical device) to 30% (managing doctors and responding to emergencies), with an average of 10% (SD: 10%). MSN ranged from 0% (not getting hurt sensory seeking and using a medical device) to 53% (managing doctors), with an average of 19% (SD: 17%). HSN ranged from 14% (not misusing drugs or alcohol and not getting hurt exercising) to 82% (scheduling appointments), with an average of 43% (SD: 20%).
Across 13 unique tasks for managing a home, the percentage of adult LSN respondents that received support ranged from 3% (avoiding hoarding) to 35% (home repairs), with an average of 21% (SD: 8%). MSN ranged from 12% (avoiding hoarding) to 59% (throwing away or taking out trash), with an average of 43% (SD: 14%). HSN ranged from 18% (avoiding hoarding) to 79% (vacuuming and doing dishes), with an average of 59% (SD: 17%).
Across 13 unique tasks for being in the community, the percentage of adult LSN respondents that received support ranged from 0% (not eloping) to 32% (managing unexpected situations), with an average of 11% (SD: 10%). MSN ranged from 6% (not eloping and avoiding rude, socially inappropriate, threatening, or violent behaviors) to 53% (driving), with an average of 22% (SD: 15%). HSN ranged from 29% (accessing a rideshare) to 64% (driving), with an average of 48% (SD: 11%).
Across 10 unique tasks for managing finances, the percentage of adult LSN respondents that received support ranged from 6% (not spending too much) to 32% (paying taxes), with an average of 16% (SD: 8%). MSN ranged from 11% (not impulsively spending money) to 47% (paying bills), with an average of 27% (SD: 11%). HSN ranged from 32% (not spending too much) to 75% (banking and paying taxes), with an average of 54% (SD: 17%). Additionally, 15% of LSN, 17% of MSN, and 43% of HSN were given money or things they can't afford.
Across 15 unique tasks for socializing, the percentage of adult LSN respondents that received support ranged from 0% (dating) to 41% (setting boundaries and saying no), with an average of 12% (SD: 11%). MSN ranged from 3% (having a healthy marriage and raising children) to 34% (recognizing when someone is abusive or exploitive), with an average of 17% (SD: 10%). HSN ranged from 0% (raising children) to 59% (recognizing when someone is abusive or exploitive), with an average of 30% (SD: 18%).
Across all domains, reminders were received by 12-27% of LSN adult respondents; 24-44% of MSN; and 11-71% of HSN.
Across all domains, prompts were received by 0-15% of LSN adult respondents; 6-32% of MSN; and 19-46% of HSN.
Across all domains, no support was received by 24-56% of LSN adult respondents; 3-33% of MSN; and 4-26% of HSN.
Frequency
For food and drinks, the percent of adult respondents that received support daily or more was 12% of LSN, 29% of MSN, and 64% of HSN. The percent that received support once a week or less was 58% of LSN, 37% of MSN, and 11% of HSN.
For hygiene and grooming, the percent of adult respondents that received support daily or more was 0% of LSN, 14% of MSN, and 29% of HSN. The percent that received support once a week or less was 93% of LSN, 53% of MSN, and 46% of HSN.
For health and safety, the percent of adult respondents that received support daily or more was 6% of LSN, 17% of MSN, and 43% of HSN. The percent that received support once a week or less was 26% of LSN, 43% of MSN, and 32% of HSN.
For managing a home, the percent of adult respondents that received support daily or more was 9% of LSN, 25% of MSN, and 39% of HSN. The percent that received support once a week or less was 65% of LSN, 33% of MSN, and 25% of HSN.
For being in the community, the percent of adult respondents that received support daily or more was 3% of LSN, 11% of MSN, and 22% of HSN. The percent that received support once a week or less was 62% of LSN, 43% of MSN, and 26% of HSN.
For managing finances, the percent of adult respondents that received support daily or more was 3% of LSN, 9% of MSN, and 31% of HSN. The percent that received support once a week or less was 79% of LSN, 51% of MSN, and 38% of HSN.
For socializing, the percent of adult respondents that received support daily or more was 3% of LSN, 9% of MSN, and 19% of HSN. The percent that received support once a week or less was 76% of LSN, 47% of MSN, and 46% of HSN.
Across domains, LSN were most likely to receive help less than once a week (21%) or never (36%). The largest portion of MSN received help multiple times a week (22%), weekly (11%), or less than once a week (17%). HSN usually received help multiple times a day (20%), daily (16%), or multiple times a week (16%).
Supporters
Across all domains, LSN respondents were unlikely to get support from an occupational therapist (0%), a service animal (0.5%), neighbors, teachers, or other community members (2%), a dietician or nutritionist (3%), a peer support program (3%), professional support staff (3%), a roommate (5%), a social skills group (6%), a mental health therapist (8%), friends (12%), a partner (21%), or parents or other caregivers (36%). 37% (18-56% in specific domains) got help from no one.
Across all domains, MSN respondents were unlikely to get support from a service animal (0.5%), neighbors, teachers, or other community members (2%), a dietician or nutritionist (3%), a roommate (4%), an occupational therapist (5%), a peer support program (6%), a social skills group (9%), professional support staff (12%), a mental health therapist (12%), friends (15%), or a partner (28%). Help was common from parents or other caregivers (53%). 16% (6-28% in specific domains) got help from no one.
Across all domains, HSN respondents were unlikely to get support from a roommate (2%), a peer support program (4%), a dietician or nutritionist (7%), a mental health therapist (7%), a social skills group (7%), an occupational therapist (8%), neighbors, teachers, or other community members (8%), a service animal (11%), professional support staff (25%), friends (19%), or a partner (20%). Help was common from parents or other caregivers (71%). 9% (4-22% in specific domains) got help from no one.
What Else Helps
Across domains, 27-32% were helped by apps on the phone, tablet, or computer. LSN were the least likely to be helped by visual schedules or social stories (13% vs 19-23%). HSN were the most helped by assistive or adaptive technology (21% vs 3-10%).
For food and drinks, grocery delivery was helpful to 24-33% of respondents. Ready-made or pre-made meals were helpful to 58% of MSN and 43-47% of LSN and HSN. Meal delivery was helpful to 50% of HSN, 42% of MSN, and 35% of LSN. Overall, 26% of LSN, 21% of HSN, and 14% of MSN didn't find anything else helpful.
For hygiene and grooming, 39% of MSN and 29-32% of LSN and HSN found electric toothbrushes helpful. 21-28% found dry shampoo helpful. HSN were most helped by products made for kids (57% vs 42% MSN vs 21% LSN), hand, body, or baby wipes (61% vs 35-36%), and shoes without shoelaces (50% vs 22% MSN vs 9% LSN). Overall, 26% of LSN, 22% of MSN, and 11% of HSN didn't find anything else helpful.
For health and safety, 61% of MSN found online patient portals or medication refills helpful (vs 36-44%). LSN were the least likely to be helped by information cards or sheets about their disabilities (15% vs 33-36%). HSN were most helped by medical alert bracelets, wallet cards, or phone apps (46% vs 25% MSN and 9% LSN) and child-proofed or safety versions of products (39% vs 19% MSN and 0% LSN). Overall, 29% of LSN, 25% of HSN, and 14% of MSN didn't find anything else helpful.
For managing a home, HSN were the least likely to benefit from an in-home or in-unit washer/dryer or dishwasher (46% vs 74-75%). MSN were the most likely to benefit from cleaning technology like a Roomba (19% vs 7-12%). LSN were the least likely to benefit from using disposable plates, cups, bowls, or plasticware (18% vs 36-39%). Across groups, 9-17% benefitted from paying for cleaning services. Overall, 21% of HSN, 8% of MSN, 3% of LSN didn't find anything else helpful.
For being in the community, HSN were the most helped by disability transit (32% vs 3-11%) and by wearing something like a lanyard to indicate they have a hidden disability (43% vs 31% MSN vs 21% LSN) but the least helped by rideshares (4% vs 18-22%). LSN were the most helped by public transportation (50% vs 39% MSN vs 18% HSN) but the least helped by placing orders online or on the phone (50% vs 61-69%). Overall, 18% of HSN, 15% of LSN, and 8% of MSN didn't find anything else helpful.
For managing finances, LSN benefited the most from online banking apps or websites (82% vs 57-61%) but the least from government support or benefits (15% vs 36-43%). Across groups, 18-22% benefited from budgeting apps or other budgeting tools, 19-25% from only paying with cash or a pre-paid card, 43-47% from autopay options for bills, and 3-11% from financial literacy classes. Overall, 21% of HSN, 14% of LSN, and 11% of MSN didn't find anything else helpful.
For socializing, 81% of MSN, 68% of HSN, and 53% of LSN benefited from online text-based social opportunities. 53% of MSN (vs 39-41%) benefited from hobby-based communities or social opportunities. 21% of LSN (vs 8-14%) benefited from community groups like religious or cultural organizations, but 12% (vs 42-46%) benefited from disability social groups. 32% of HSN (vs 15-19%) benefited from books with social scripts, scenarios, or explanations of figurative language. Across groups, 15-25% benefited from video or audio-based social opportunities, and 3-11% from videos modeling social interactions. Overall, 21% of LSN, 18% of HSN, 11% of MSN didn't find anything else helpful.
Consequences of Not Getting Enough Support
Without support for food and drinks, 3% of LSN respondents would starve to death, and 22% would be unhealthy; for MSN, 3% would starve, 17% would get very sick, and 33% would be unhealthy; and for HSN, 46% would starve, 21% would get very sick, and 14% would be unhealthy. The percent of respondents that would be okay without any support was 22% for LSN, 6% for MSN, and 0% for HSN.
Without support for hygiene and grooming, 6% of LSN respondents would get sick, 6% would be very unclean, and 24% would be disheveled or smell; for MSN, 6% would get sick, 20% would be very unclean, and 23% would be disheveled or smell; and for HSN, 54% would get sick, 21% would be very unclean, and 14% would be disheveled or smell. The percent of respondents that would be okay without any support was 45% for LSN, 20% for MSN, and 4% for HSN.
Without support for health and safety, no LSN respondents would die, 9% would get very sick, and 35% would be unhealthy; for MSN, 8% would die, 28% would get very sick, and 19% would be unhealthy; and for HSN, 29% would die, 39% would get very sick, and 14% would be unhealthy. The percent of respondents that would be okay without any support was 9% for LSN, 3% for MSN, and 0% for HSN.
Without support for managing a home, no LSN respondents would be homeless, 9% would have a hazardous home, and 45% would have a very unclean home; for MSN, 17% would be homeless, 20% would have a hazardous home, and 46% would have a very unclean home; and for HSN, 39% would be homeless, 32% would have a hazardous home, and 18% would have a very unclean home. The percent of respondents that would be okay without any support was 6% for LSN and 0% for MSN and HSN.
Without support for being in the community, no LSN respondents would be unsafe, 9% wouldn't be able to access their community, and 6% would frequently get lost or have meltdowns; for MSN, 12% would be unsafe in the community, 26% wouldn't be able to access their community, and 21% would frequently get lost or have meltdowns; and for HSN, 54% would be unsafe in the community, 25% wouldn't be able to access their community, and 7% would frequently get lost or have meltdowns. The percent of respondents that would be okay without any support was 32% for LSN, 9% for MSN, and 0% for HSN.
Without support for managing finances, 9% of LSN respondents would die, be very sick, or be homeless, 15% would be in poverty, and 24% would live paycheck to paycheck; for MSN, 40% would die, be very sick, or be homeless, 11% would be in poverty, and 9% would live paycheck to paycheck; and for HSN, 64% would die, be very sick, or be homeless, 18% would be in poverty, and 7% would live paycheck to paycheck. The percent of respondents that would be okay without any support was 20% for LSN, 6% for MSN, and 0% for HSN.
Without support for socializing, 9% of LSN would have no one in an emergency, be severely abused, or severely hurt others, 35% would be very lonely, be taken advantage of, or badly upset others, and 9% would have only shallow relationships; for MSN, 15% would be isolated or severely at risk, 47% would be lonely or at risk, and 9% would have only shallow relationships; and for HSN, 48% would be isolated or severely at risk, and 48% would be lonely or at risk. The percent of respondents that would be okay without any support was 9% for LSN, 0% for MSN, and 4% for HSN.
Overall Need for More Support
Most LSN needed more support in order to be healthy (53%) or were healthy with the amount of support that they had but would be less stressed with more support (41%); a minority were fine with the support they had (6%).
Half of MSN needed more support to be healthy (50%), but many were fine with the support they had (8%) or were healthy but would be less stressed with more support (28%); in contrast, 14% needed more support soon in order to survive.
Most HSN needed more support in order to be healthy (75%), but 4% were fine with the support they had, 11% needed more support to be less stressed, and 11% needed more support to survive.
Reasons for Not Having More Support
LSN respondents were the most likely to have been diagnosed too old for developmental disability services (41% vs 14-21%), to not be considered disabled enough for support meant for disabled people (59% vs 36% MSN vs 21% HSN), and to be ashamed or feel like they don't deserve more support (68% vs 42% MSN vs 29% HSN).
MSN were the most likely to say their friends, family, or community refuse to help them (39% vs 29% HSN vs 6% LSN) or can't help them (44% vs 35% LSN vs 29% HSN).
HSN respondents were the most likely to say insurance doesn't cover the services they need (29% vs 19-24%) and that they can't afford private-pay services (46% vs 31-35%).
Across groups, 28-32% had an IQ too high to qualify for developmental disability services, 18-26% weren't poor enough for services meant for low-income people, 0-3% couldn't get help because of their immigration status, 21-28% lived in area without the services they needed, 61-67% didn't understand the process for getting more support, and 7-15% lived in a community where getting support for a disability is highly stigmatized. 4-6% said they don't need more support.
Autism and Comorbidities
Autism Diagnosis
Formal diagnoses were most common in HSN (79%) followed by LSN (71%) and MSN (67%). 11% of MSN, 7% of HSN, and 6% of LSN had no diagnosis.
Almost all LSN were diagnosed with a non-DSM-5 diagnosis (26%), ASD with no level (32%), or level 1 ASD (29%); 3% had level 2 ASD. Most MSN were diagnosed with a non-DSM-5 diagnosis (28%), ASD with no level (17%), or level 1 ASD (11%), but 22% had level 2 ASD. Most HSN were diagnosed with level 2 ASD (21%), level 3 ASD (21%), or split-level 2/3 ASD (14%), but 7% had a non-DSM-5 diagnoses, 25% had ASD with no level, and 4% had level 1 ASD.
Autism-Related Support Needs
LSN self-reported that their autism was LSN (24%) or LMSN (76%). MSN self-reported that their autism was LSN (3%), LMSN (42%), or MSN (56%). HSN self-reported that their autism was LSN (4%), LMSN (7%), MSN (43%), MHSN (29%), or HSN (18%).
Mental Health and Developmental Disability Comorbidities
ADHD was equally common across groups (50-54%), as were anxiety disorders (56-67%), depression (41-50%), bipolar disorder (6-8%), somatic symptom disorder (0-6%), and substance use disorders (3-6%).
Tic disorders were most common in HSN (21% vs 0-6%), as were specific learning disorders (39% vs 22% MSN vs 6% LSN), intellectual disability (11% vs 0-6%), other cognitive impairment (32% vs 0-3%), expressive and receptive language impairment (36% vs 11% MSN vs 0% LSN), schizophrenia spectrum disorders (18% vs 11% MSN, 0% LSN), OCD (32% vs 25% MSN vs 18% LSN), PTSD (54% vs 44% MSN vs 12% LSN), and dissociative disorders (61% HSN vs 31% MSN vs 6% LSN).
Eating disorders were least common in LSN (18% vs 29-31% MSN and HSN), as were sleep disorders (12% vs 28-32%) and personality disorders (0% vs 21-22%).
18% of LSN, 3% of MSN, and 0% of HSN had no mental health or developmental disability comorbidities.
Physical Health Comorbidities
For physical health comorbidities, there were no group differences for metabolic or endocrine disorder or injury (6-15%), renal or urogenital disorder or injury (0-9%), reproductive disorder or injury (6-11%), skin disorders (3-13%), blood disorders (0-4%), immunodeficiency (0-6%), cancer (0%), long-term infectious illness (0%), and limb loss or serious injury (0%).
Neurological disorders or injuries were the most common in HSN (44% vs 9-11%), as were cardiovascular disorder or injury (26% vs 3-9%), lung or respiratory disorder or injury (26% vs 14% MSN vs 6% LSN), and gastrointestinal disorder or injury (48% vs 31% MSN vs 9% LSN).
Autoimmune disorders were the most common in MSN (17% vs 4-6%), as was fibromyalgia (34% vs 19%).
Epilepsy was the least common in LSN (0% vs 9-11%), as were spinal cord or nerve disorder or injury (0% vs 11%), musculoskeletal disorder or injury (6% vs 17-22%), connective tissue disorders (16% vs 37% MSN vs 44% HSN), severe allergies (3% vs 11% MSN vs 19% HSN), hearing or vision loss (3% vs 14-15%), and post-viral syndromes (19% vs 29-30%).
28% of LSN, 9% of MSN, and 4% of HSN had no physical health comorbidities.
Other Demographics
Age
Most LSN were between 19-21 (26%), 22-25 (24%), or 26-30 (29%). Most MSN were between 19-21 (39%) or 22-25 (36%). Half of HSN were between 19-21 (50%).
Sex and Gender
Most respondents were AFAB (92-97%). 32% of LSN, 26% of HSN, and 19% of MSN identified as women. 15-22% identified as men. 47-50% identified as nonbinary or other. 4-8% across groups weren't sure.
Race and Ethnicity
85% of LSN, 74% of MSN, and 71% of HSN identified as White. Black or African American ranged from 3% (LSN and MSN) to 11% (HSN). Asian ranged from 3% (LSN and MSN) to 11% (HSN). Native or Indigenous ranged from 3% (LSN) to 8-9% (MSN and HSN). Hawaiian or Pacific Islander ranged from 0% (LSN and HSN) to 6% (MSN). Hispanic or Latino/a/x ranged from 0% (LSN) to 6-7% (MSN and HSN). Jewish ranged from 3-6%.
Referral Source
Reddit was least common for HSN (7%) and most common for LSN (18%). Tumblr was least common for LSN (65%) and most common for MSN (81%). 19% of HSN vs 3-6% of LSN and MSN respondents were referred through Discord. 15% of LSN and 0% of others were referred by a friend.
Final Summary: Stimming, Fidgeting, and Other Repetitive Behaviors in Autism and ADHD
I posted a survey a few months ago about stimming, fidgeting, and other repetitive behaviors in autism and ADHD. This is a final summary from 186 responses.
58 respondents (32%) had only diagnosed or suspected autism, 105 (56%) had both autism and ADHD, and 10 (5%) had only diagnosed or suspected ADHD. (The remainder weren't sure.) Because these are theoretically three separate populations, diagnosis groups were compared using chi-square tests, and differences were considered significant at p < .05.
Overall, respondents endorsed a wide range of repetitive behaviors in all domains (visual, auditory, tactile, proprioceptive, oral, olfactory, and other). Autism was associated with more repetitive behaviors than ADHD, and those with both autism and ADHD usually had the most repetitive behaviors. Reasons for repetitive behaviors differed between groups; those with autism used repetitive behaviors more for self-regulation, whereas those with ADHD had more repetitive behaviors when bored. Those with just autism felt the least in control of their repetitive behaviors. Almost all respondents had faced consequences for their repetitive behaviors (for example, other people getting angry, or the respondent breaking an object), especially those with autism.
(Summary and graphs under a read more due to length)
Overall Stimming, Fidgeting, or Repetitive Behaviors
Frequency in Private
In private, most respondents had repetitive behaviors almost constantly (75-100% of the time; 45%) or 50-75% of the time (20%). Others had these behaviors 25-50% of the time (8%), multiple times a day but less than 25% of the time (17%), once or twice a day (4%), or multiple times a week (1%). 5% said it varies too much to answer.
Those with both autism and ADHD had private repetitive behaviors the most (0% less than daily, 17% less than 1/4 of the day, 7% 1/4-1/2 of the day, 70% over 1/2 of the day), followed by those with just autism (0% less than daily, 19% less than 1/4 of the day, 10% 1/4-1/2 of the day, 67% over 1/2 of the day). Those with just ADHD had private repetitive behaviors the least (10% less than daily, 60% less than 1/4 of the day, 0% 1/4-1/2 of the day, 30% over 1/2 of the day).
Frequency in Public
In public, most respondents had repetitive behaviors 25-50% of the time (16%), multiple times a day but less than 25% of the time (23%), or once or twice a day (12%). Others had repetitive behaviors almost constantly (75-100% of the time; 11%), 50-75% of the time (16%), multiple times a week (8%), weekly (4%), less than weekly (4%), or never (1%). 4% said it varies too much to answer.
There were no significant differences based on autism or ADHD status.
Changes Over Time
Almost half of respondents said that their repetitive behaviors are more common now (28%) or haven't changed since childhood (17%). 19% said they had more repetitive behaviors as a child. 14% said it varies too much to answer, and 23% didn't know.
In contrast, almost half of respondents said that their repetitive behaviors are smaller or more subtle now (31%) or haven't changed since childhood (18%). 23% said their repetitive behaviors are larger or more obvious now than as a child. 10% said it varies too much to answer, and 18% didn't know.
There were no significant differences based on autism or ADHD status.
Reasons for Repetitive Behaviors
Almost all respondents engaged in repetitive behaviors without meaning to (82%) or to calm down (80%) or regulate emotions (75%). Many engaged in repetitive behaviors to create good sensory input (65%), regulate sensory overload (61%), be less bored (58%), have fun (55%), block bad sensory input (52%), or express feelings (52%).
A minority had repetitive behaviors because it feels bad or painful to be still (45%) or to feel happier (45%). Others wrote in that it helps them process thoughts, focus, get out energy, or relax.
Compared to those with just ADHD, the autism groups were more likely to have repetitive behaviors to calm down (82-83% vs 50%), regulate emotions (77-81% vs 10%), block bad sensory input (52-58% vs 20%), regulate sensory overload (61-68% vs 20%), or express emotions (56-58% vs 20%).
Compared to those with just autism, the ADHD groups were more likely to have repetitive behaviors to be less bored (60-68% vs 39%).
Reasons for Increased Repetitive Behaviors
Most respondents reported that their repetitive behaviors increase in response to stress (83%), under-stimulation (77%), happiness or excitement (77%), any intense emotion (68%), sensory overload (60%), being with people they were comfortable unmasking with (60%), bad sensory input (58%), and boredom (55%).
Many reported their repetitive behaviors increase in response to being with other people who are stimming or making repetitive movements (44%), feeling unheard or misunderstood (43%), and being tired (32%). Others wrote in fear or anxiety, their hands being unoccupied, being very focused on something, being alone, thinking hard, being hungry, drinking alcohol, infodumping, being in pain, feeling discomfort, or feeling "cozy."
Compared to those with just ADHD, the autism groups were more likely to increase repetitive behaviors because of happiness (79-84% vs 40%), any intense emotion (69-77% vs 0%), bad sensory input (61% vs 10%), sensory overload (61-67% vs 30%), feeling unheard or misunderstood (44-47% vs 10%), being with other people making repetitive movements or noises (39-50% vs 10%), and being with people they're comfortable unmasking with (58-65% vs 10%).
Compared to those with just autism, the ADHD groups were more likely to increase repetitive behaviors because of boredom (63-70% vs 33%).
Sense of Control
Most respondents felt mostly (65%) or completely (4%) in control of when they do repetitive behaviors. 27% were not very in control, and 3% were not at all in control. 2% weren't sure.
Most respondents felt mostly (55%) or completely (13%) in control of what kind of repetitive behaviors they do. 28% were not very in control, and 3% were not at all in control. 2% weren't sure.
Groups were comparable in their sense of control over when they do repetitive behaviors. Those with just autism had the least control over what repetitive behavior they do (10% completely, 41% mostly, 36% not very, 9% not at all), those with both autism and ADHD in the middle (10% completely, 63% mostly, 26% not very), and those with just ADHD the most (50% completely, 40% mostly, 10% not very).
Other People's Acceptance of Repetitive Behaviors
Most respondents had family that was somewhat accepting of their repetitive behaviors (51%). Other family was very accepting (32%) or not at all accepting (12%). 6% of respondents weren't sure.
Most respondents weren't sure if their intimate partner accepted their repetitive behaviors, or this question was not relevant to them (57%). Others thought that their intimate partner was very (35%) or somewhat (6%) accepting. Only 2% said their partner was not at all accepting.
Most respondents had friends that were very accepting of their repetitive behaviors (55%). Other friends were somewhat accepting (26%) or not at all accepting (2%). 17% of respondents weren't sure.
Many respondents weren't sure if their classmates or coworkers accepted their repetitive behaviors, or this question was not relevant to them (40%). Others had classmates or coworkers that were very (9%), somewhat (35%), or not at all (16%) accepting.
Almost half of respondents weren't sure if their teachers or boss accepted their repetitive behaviors, or this question was not relevant to them (46%). Others thought that their teachers or boss were very (9%), somewhat (33%), or not at all (12%) accepting.
Many respondents weren't sure if their doctors or other professionals accepted their repetitive behaviors (38%). Others had doctors or other professionals that were very (20%), somewhat (31%), or not at all (10%) accepting.
Most respondents weren't sure if other people in their community (for example, neighbors) accepted their repetitive behaviors (59%). Others thought that others were very (5%), somewhat (24%), or not at all (12%) accepting.
Most respondents weren't sure if strangers accepted their repetitive behaviors (52%). Others thought that strangers were very (3%), somewhat (21%), or not at all (24%) accepting.
There were no significant differences based on autism or ADHD status.
Other People's Negative Reactions to Repetitive Behaviors
Most respondents had been told to stop moving around or to be quiet (85%). Many had gotten in trouble at school or work (49%), been insulted or called names (46%), been yelled at (43%), or gotten in trouble for doing something unsafe or dirty (23%).
A small number of respondents had been hurt by someone (15%), been physically restrained (14%), gotten in trouble for touching people without their permission (9%), had therapy or ABA to make them stim less (9%), been locked in a room alone (8%), had therapy or ABA to make them stim in safer or cleaner ways (6%), had therapy or ABA for impulse control or to be less hyperactive (6%), had the police called or been made to go to jail or prison (5%), had an ambulance called or been made to go to a hospital (4%), been forcefully medicated (4%), been forced onto medication long-term (3%), or had therapy or ABA to make them stim in smaller or more private ways (3%).
9% experienced no negative reactions to their repetitive behaviors. Others had security called or were seen as unprofessional.
There were no significant differences based on autism or ADHD status.
Other Consequences of Repetitive Behaviors
Most respondents had hurt themselves a little (for example, bit nails too short or pulled too much hair; 81%). Others had hurt themselves moderately (had to take medication; 29%), badly (had to see a doctor; 9%), or very badly (had to go to the hospital or caused permanent damage; 3%). 12% had hurt someone else, and 3% had hurt an animal.
Other relatively common consequences included being unable to stop moving in order to fall asleep (42%), causing inconveniences at school or work (for example, knocking over or spilling things; 39%), causing inconveniences at home (for example, accidentally burning food or leaving the sink running too long; 37%), or breaking an object (31%).
Less common consequences included being unable to use tools or appliances safely (17%), being late to a meeting or appointment (11%), or being unable to cook safely (8%).
12% had experienced no consequences of their repetitive behaviors. Others wrote in that they had distracted someone who was driving, made themself nauseated, or overate to the point of vomiting.
Compared to those with just ADHD, the autism groups were more likely to have ever caused inconveniences at school or work (32-42% vs 10%), caused inconveniences at home (33-47% vs 0%), broke an object (26-37% vs 0%), and hurt themselves a little (83-84% vs 50%). 7% of those with just autism, 9% with both autism and ADHD, and 50% with just ADHD never had other consequences for their repetitive behaviors.
Visual Repetitive Behaviors
Ever (After Age 5)
Most respondents had had visual repetitive behaviors involving watching rain or running water (72%), focusing and unfocusing their vision (67%), looking at glowing objects or objects that change color (60%), watching spinning or rotating objects (59%), looking at different things in a pattern or tracing outlines with their eyes (58%), lining up objects (57%), looking at light filtering through or reflecting off of other objects (54%), shaking, flapping, or twisting hands, fingers, or objects near their eyes (51%), watching other repetitive movement (50%), and blinking a lot or very quickly (50%).
Many had had repetitive behaviors involving looking at objects from different angles (45%), watching videos or TV (45%), looking at sensory lamps or special projectors (44%), looking at pretty pictures or art (40%), looking at bright lights (37%), looking at "busy", crowded, or patterned things (37%), crossing and uncrossing their eyes (33%), looking at gifs (31%), turning lights on and off (30%), looking at specific colors (27%), and watching other non-repeating movement (22%).
8% had never had any visual repetitive behaviors. Others wrote in that they had had visual repetitive behaviors involving looking at specific people's faces, shining a laser light into their eyes, imagining a repetitive motion, pressing their palms against their eyes to see patterns, looking at fire, pressing their eyes to see double, zooming in and out on electronic screens, shaking their eyeballs (voluntary nystagmus), and glancing around rapidly.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively looked at light filtering through or reflecting off of other objects (53-58% vs 20%), looked at sensory lamps or special projectors (40-49% vs 0%), looked at glowing objects or objects that change color (53-67% vs 20%), looked at "busy", crowded, or patterned things (31-44% vs 10%), watched spinning or rotating objects (55-64% vs 10%), watched rain or running water (71-78% vs 40%), shaken, flapped, or twisted hands, fingers, or objects near their eyes (50-53% vs 10%), blinked a lot or very rapidly (48-56% vs 10%), and focused or unfocused their vision (69-71% vs 30%).
In almost all cases, those with both autism and ADHD endorsed having ever had visual repetitive behaviors at the highest rates, those with just autism endorsed behaviors at slightly lower rates, and those with just ADHD endorsed behaviors at the lowest rates. 7% of those with just autism, 4% with both autism and ADHD, and 40% with just ADHD had never had visual repetitive behaviors.
Current (Past Month)
At the time of the survey, many respondents had visual repetitive behaviors involving watching rain or running water (48%), focusing and unfocusing their vision (39%), watching spinning or rotating objects (38%), looking at different things in a pattern or tracing outlines with their eyes (37%), shaking, flapping, or twisting hands, fingers, or objects near their eyes (35%), watching videos or TV (34%), watching other repetitive movement (33%), looking at pretty pictures or art (33%), blinking a lot or very quickly (30%), looking at light filtering through or reflecting off of other objects (29%), lining up objects (29%), looking at glowing objects or objects that change color (28%), looking at gifs (26%), looking at objects from different angles (24%), looking at specific colors (22%), and looking at "busy", crowded, or patterned things (22%).
Relatively few had repetitive behaviors involving looking at sensory lamps or special projectors (18%), looking at bright lights (16%), crossing and uncrossing their eyes (13%), watching other non-repeating movement (10%), or turning lights on and off (6%).
10% had no visual repetitive behaviors within the past month. Others wrote in that they had had visual repetitive behaviors involving imagining a repetitive motion, pressing their palms against their eyes to see patterns, looking at fire, and zooming in and out on electronic screens.
Compared to those with just ADHD, the autism groups were more likely to have repetitively looked at glowing objects or objects that change color (28-32% vs 0%), watched spinning or rotating objects (34-43% vs 0%), watched rain or running water (48-59% vs 10%), blinked a lot or very rapidly (29-34% vs 0%), and focused or unfocused their vision (41% vs 0%).
In all cases, those with just ADHD endorsed having visual repetitive behaviors within the last month at the lowest rates. 7% of those with just autism, 6% with both autism and ADHD, and 50% with just ADHD did not have visual repetitive behaviors within the past month.
Frequency
Half of respondents engaged in visual repetitive behaviors multiple times a week (16%), once or twice a day (12%), or several times a day (22%). Others engaged almost constantly (4%), 50-75% of the time when awake (3%), 25-50% of the time when awake (7%), weekly (7%), once every few weeks (10%), or less than once a month (4%). 8% never had this type of repetitive behavior, and 8% said it varies too much to answer.
There were no significant differences based on autism or ADHD status.
Audio Repetitive Behaviors
Ever (After Age 5)
Most respondents had had audio repetitive behaviors involving listening to a song or part of a song on repeat (87%), tapping their fingers or an object to a beat (80%), listening to music (79%), making random noises like popping sounds (73%), repeating a word or phrase over and over (68%), talking out loud to themselves (67%), humming (66%), singing (62%), drumming on something (61%), having videos or TV playing in the background (57%), snapping or clapping (50%), and making animal noises (50%).
Many had had audio repetitive behaviors involving listening to white noise (39%), reciting parts of plays or movies (36%), listening to nature sounds (35%), listening to podcasts or talk radio (31%), whistling (30%), reciting strings of numbers or facts (28%), yelling or screaming (26%), talking to people (26%), and listening to audio books (21%).
Relatively few had ever had audio repetitive behaviors involving reciting poems (18%) or beatboxing or rapping (9%).
2% had never had audio stims. Others wrote in "babbling" with their AAC, playing with squeaky toys, talking in accents, counting, saying nonsense, coughing, covering and uncovering their ears to change how things sound, and clicking their pen. Additionally, one respondent wrote in that they do these things despite being profoundly deaf from birth.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively listened to a song or part of a song (86-90% vs 60%), made animal noises (45-57% vs 20%), made random other noises (72-79% vs 30%), hummed (59-73% vs 30%), and recited strings of numbers or facts (26-30% vs 0%).
Compared to those with just autism, the ADHD groups were more likely to have ever repetitively sung (60-69% vs 52%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have ever repetitively listened to white noise or other meaningless sounds (48% vs 20-29%), listened to music in general (89% vs 60-66%), listened to podcasts or talk radio (38% vs 20-24%), talked to people (33% vs 10-17%), recited parts of plays or movies (45% vs 29% just autism, 0% just ADHD), tapped their fingers or an object to a beat (90% vs 66-70%), drummed on something (76% vs 30-38%), snapped or clapped (62% vs 36% just autism, 10% just ADHD), repeated a word or phrase over and over (78% vs 40-57%), and yelled or screamed (33% vs 10-17%).
In all cases, those with both autism and ADHD endorsed having ever had audio repetitive behaviors at the highest rates, and those with just autism tended to endorse more behaviors than those with just ADHD. 0-2% of all groups had never had audio repetitive behaviors.
Current (Past Month)
Most respondents had audio repetitive behaviors involving listening to a song or part of a song on repeat (76%), listening to music (68%), tapping their fingers or an object to a beat (61%), making random noises like popping sounds (58%), humming (56%), talking out loud to themselves (51%), and singing (50%).
Many had audio repetitive behaviors involving repeating a word or phrase over and over (48%), having videos or TV playing in the background (47%), drumming on something (40%), making animal noises (34%), snapping or clapping (31%), listening to podcasts or talk radio (22%), and listening to white noise (22%).
Relatively few had audio repetitive behaviors involving whistling (19%), talking to people (18%), yelling or screaming (17%), reciting parts of plays or movies (16%), listening to nature sounds (14%), reciting strings of numbers or facts (12%), listening to audio books (9%), beatboxing or rapping (4%), or reciting poems (4%).
2% had no audio repetitive behaviors within the past month. Others wrote in talking in accents, counting, and saying nonsense. Additionally, one respondent wrote in that they do these things despite being profoundly deaf from birth.
Compared to those with just ADHD, the autism groups were more likely to have repetitively made random noises (53-66% vs 20%).
Compared to those with just autism, the ADHD groups were more likely to have repetitively sung (50-61% vs 33%) and tapped their fingers or an object to a beat (69-70% vs 45%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have repetitively listened to white noise or other meaningless sounds (28% vs 10-14%), listened to music in general (78% vs 50-52%), listened to podcasts or talk radio (27% vs 10-16%), talked to people (24% vs 10-12%), made animal noises (40% vs 28% just autism, 0% just ADHD), hummed (63% vs 50% just autism, 30% just ADHD), drummed on something (54% vs 17-20%), snapped or clapped (39% vs 10-19%), repeated a word or phrase over and over (59% vs 20-33%), and yelled or screamed (23% vs 12% just autism, 0% just ADHD).
In almost all cases, those with both autism and ADHD endorsed having audio repetitive behaviors within the last month at the highest rates, and those with just autism tended to endorse more behaviors than those with just ADHD. 0-2% of all groups had not had audio repetitive behaviors within the past month.
Frequency
Around half of respondents engaged in audio repetitive behaviors once or twice a day (19%) or several times a day (26%). Others engaged almost constantly (10%), 50-75% of the time when awake (11%), 25-50% of the time when awake (14%), multiple times a week (8%), weekly (4%), or once every few weeks (1%). 2% never had this type of repetitive behavior, and 5% said it varies too much to answer.
There were no significant differences based on autism or ADHD status.
Tactile or Proprioceptive Repetitive Behaviors
Tactile Ever (After Age 5)
Most respondents had had tactile repetitive behaviors involving scratching or picking at their skin (83%), touching or rubbing fabrics or clothing (81%), hugging or squeezing a person, pillow, or pet (76%), touching or rubbing other soft surfaces (74%), rubbing their fingers or hands (74%), squeezing or applying pressure to part of their body (73%), pushing buttons or switches on stim toys (70%), touching or rubbing textured surfaces on stim toys (69%), hair twirling (69%), petting or stroking an animal (68%), touching or rubbing hard surfaces (67%), hitting their body (60%), rubbing their thighs or legs (56%), rubbing their scalp or face (53%), pulling their hair (52%), and touching something warm or hot (50%).
Many respondents had had tactile repetitive behaviors involving touching water or other liquids (47%), touching something cool or cold (45%), banging their head into hard surfaces (40%), hitting their face (37%), showering or bathing (33%), and petting or stroking another person (30%).
1% had never had a tactile repetitive behavior. Three respondents wrote in cracking joints. Others wrote in chewing their hair, picking their nails, touching sharp or pointy things, manipulating objects repetitively, clicking their nails together, massaging a soft toy, cutting, pressing their nails into their skin, pressing their tongue into the roof of their mouth, rubbing their legs together, flipping lights on and off, picking the fur on a stuffed animal, tearing off fingernails, pressing pointy things into their nail cuticles, rubbing their arms, playing with jewelry, and running their nails along smooth surfaces.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively touched or rubbed textured surfaces on stim toys (66-74% vs 30%), touched or rubbed fabrics or clothing (78-85% vs 40%), touched or rubbed other soft surfaces (74-80% vs 20%), touched or rubbed hard surfaces (67-71% vs 30%), touched something warm or hot (49-56% vs 10%), touched something cool or cold (42-49% vs 10%), hugged or squeezed a person, pillow, or pet (75-83% vs 30%), pulled hair (52-56% vs 20%), hit their body (60-66% vs 10%), hit their face (34-43% vs 0%), and head banged (37-45% vs 0%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have ever repetitively pushed buttons or switches on stim toys (77% vs 61% just autism, 40% just ADHD) and petted or stroked an animal (75% vs 58% just autism, 20% just ADHD).
Those with just autism or both autism and ADHD were similar across items, and both were consistently more likely to endorse having ever had tactile repetitive movements than those with just ADHD. 3% of those with just autism and 0% with ADHD had never had tactile repetitive behaviors.
Tactile Current (Past Month)
Most respondents had tactile repetitive behaviors involving scratching or picking at their skin (70%), rubbing their fingers or hands (64%), touching or rubbing fabrics or clothing (63%), squeezing or applying pressure to part of their body (57%), and hugging or squeezing a person, pillow, or pet (53%).
Many respondents had tactile repetitive behaviors involving petting or stroking an animal (48%), touching or rubbing other soft surfaces (48%), hair twirling (45%), rubbing their scalp or face (43%), touching or rubbing hard surfaces (43%), rubbing their thighs or legs (43%), touching or rubbing textured surfaces on stim toys (41%), hitting their body (36%), pulling their hair (34%), pushing buttons or switches on stim toys (32%), touching something warm or hot (32%), touching something cool or cold (30%), touching water or other liquids (29%), hitting their face (21%), and showering or bathing (20%).
Relatively few respondents had tactile repetitive behaviors involving petting or stroking another person (19%) or banging their head into hard surfaces (14%).
1% had no tactile repetitive behaviors within the last month. Two respondents wrote in cracking joints. Others wrote in chewing their hair, picking their nails, touching sharp or pointy things, manipulating objects repetitively, clicking their nails together, pressing their tongue into the roof of their mouth, rubbing their legs together, flipping lights on and off, picking the fur on a stuffed animal, rubbing their arms, and playing with jewelry.
Compared to those with just ADHD, the autism groups were more likely to have repetitively touched or rubbed hard surfaces (37-51% vs 10%), touched water or other liquids (25-34% vs 0%), touched something warm or hot (29-38% vs 0%), hugged or squeezed a person, pillow, or pet (53-57% vs 20%), petted or stroked an animal (46-51% vs 0%), and hit their body (36-39% vs 0%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have repetitively touched something cool or cold (38% vs 20% just autism, 0% just ADHD).
Those with just autism or both autism and ADHD were similar across items, and both were consistently more likely to endorse having had tactile repetitive movements within the past month than those with just ADHD. 3% of those with just autism and 0% with ADHD had not had tactile repetitive behaviors within the past month.
Proprioceptive Ever (After Age 5)
Most respondents had had proprioceptive repetitive behaviors involving playing with small objects like a pen or string (94%), shaking their leg (85%), tapping their fingers (82%), rocking (81%), pacing (80%), bending, twisting, spinning, or pressing fidget toys (76%), bending or twisting their fingers (73%), flapping (73%), jumping or bouncing (67%), walking on tiptoes (66%), other complex movements of the hand or fingers (65%), spinning (59%), wringing or making washing movements with their hands (58%), swinging (56%), and shaking or turning their head (52%).
Many respondents had had proprioceptive repetitive behaviors involving dancing (47%), hanging up-side-down (42%), balancing on one leg or a balance board (38%), opening and closing doors or drawers (37%), and running (35%).
None had never had proprioceptive repetitive behaviors. Two wrote in tensing muscles, stretching, or maneuvering in a wheelchair. Others wrote in galloping, lying down underneath something heavy, using a yoga ball, tapping their foot, balancing a titled chair, swinging their feet in a pattern, bending their toes, or climbing things.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively bended, twisted, spun, or pressed fidget toys (69-82% vs 50%), wrung or made washing movements with their hands (53-65% vs 0%), shaken or turned their head (51-57% vs 10%), flapped (76-81% vs 10%), walked on tiptoes (59-71% vs 30%), rocked (81-86% vs 30%), spun (59-63% vs 20%), and swung (49-64% vs 20%).
Compared to those with just autism, the ADHD groups were more likely to have ever repetitively shaken their leg (90-100% vs 73%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have ever repetitively made other complex movements of the hand or fingers (72% vs 40-56%), danced (59% vs 20-29%), and jumped or bounced (77% vs 40-56%).
Overall, the groups were similar for having ever made proprioceptive repetitive movements, but those with just ADHD still tended to endorse items at the lowest rate. No respondents had never had proprioceptive repetitive behaviors.
Proprioceptive Current (Past Month)
Most respondents had proprioceptive repetitive behaviors involving playing with small objects like a pen or string (87%), shaking their leg (72%), tapping their fingers (69%), rocking (62%), bending or twisting their fingers (61%), pacing (59%), flapping (58%), other complex movements of the hand or fingers (55%), and bending, twisting, spinning, or pressing fidget toys (55%).
Many respondents had proprioceptive repetitive behaviors involving wringing or making washing movements with their hands (45%), jumping or bouncing (43%), walking on tiptoes (41%), shaking or turning their head (38%), dancing (27%), and spinning (22%).
Relatively few respondents had proprioceptive repetitive behaviors involving balancing on one leg or a balance board (18%), swinging (18%), running (15%), opening and closing doors or drawers (14%), or hanging up-side-down (8%).
None had no proprioceptive repetitive behaviors within the last month. Two wrote in tensing muscles or stretching. Others wrote in galloping, maneuvering in a wheelchair, using a yoga ball, tapping their foot, or bending their toes.
Compared to those with just ADHD, the autism groups were more likely to have repetitively wrung or made washing movements with their hands (42-52% vs 0%), shaken or turned their head (36-44% vs 0%), flapped (61-64% vs 10%), jumped or bounced (41-49% vs 10%), and rocked (61-65% vs 0%).
Compared to those with just autism, the ADHD groups were more likely to have repetitively shaken their leg (77-100% vs 59%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have repetitively danced (36% vs 10-14%) and walked on tiptoes (51% vs 20-27%).
Overall, the groups were similar for having made proprioceptive repetitive movements within the past month, but those with just ADHD still tended to endorse items at the lowest rate. No respondents had not had proprioceptive repetitive behaviors within the past month.
Frequency
Almost half of respondents engaged in tactile or proprioceptive repetitive behaviors 50-75% of the time when awake (19%) or almost constantly (26%). Others engaged 25-50% of the time when awake (12%), several times a day (26%), once or twice a day (5%), multiple times a week (4%), weekly (3%), or less than weekly (1%). 4% said it varies too much to answer.
There were no significant differences based on autism or ADHD status.
Oral or Olfactory Repetitive Behaviors
Oral Ever (After Age 5)
Most respondents had had oral repetitive behaviors involving chewing their cheeks, tongue, or lips (72%), biting their fingers or nails (66%), eating foods with textures they like (64%), rubbing, tapping, or picking their lips (62%), chewing gum (60%), sucking hard candies (55%), and grinding their teeth (51%).
Many respondents had had oral repetitive behaviors involving chewing or sucking on clothing (49%), licking or sucking their lips (48%), chewing or sucking their thumb, other fingers, or hand (48%), biting other parts of their body (48%), eating or drinking things that are very bitter, sour, or spicy (44%), drinking liquid with textures they like (42%), chewing or sucking on stim toys (41%), making repetitive mouth movements like blowing raspberries (40%), eating dead skin, scabs, or hair (40%), chewing or sucking on other objects (39%), eating or drinking things with other strong tastes (31%), and eating non-food items like sand or paper (30%).
Relatively few had had oral repetitive behaviors involving licking objects (18%) or biting other people (18%). Almost none had ever had oral repetitive behaviors involving eating fecal waste (3%).
3% had never had an oral repetitive behavior. Three respondents wrote in chewing or sucking their hair. Others wrote in eating boogers, flexing their jaw side to side, running their tongue along their teeth ridges, pressing their tongue into the roof of their mouth, running hair over their lips, clacking their teeth, blowing spit bubbles, picking between their teeth, and drinking cold drinks.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively chewed gum (56-68% vs 20%), ground their teeth (42-58% vs 20%), chewed or sucked their thumb, other fingers, or hand (42-56% vs 0%), chewed or sucked on stim toys (36-46% vs 10%), and bit their nails or fingers (64-72% vs 30%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have ever repetitively sucked hard candies (65% vs 20-41%), eaten foods for the texture (71% vs 30-56%), drunken liquids for the texture (53% vs 0-25%), and chewed or sucked on other objects (48% vs 27-30%).
In almost all cases, those with both autism and ADHD were the most likely to endorse having ever had an oral repetitive behavior, and those with just ADHD were the least likely to endorse a behavior. 3% of those with just autism, 2% with both autism and ADHD, and 20% with just ADHD had never had oral repetitive behaviors.
Oral Current (Past Month)
Most respondents had oral repetitive behaviors involving chewing their cheeks, tongue, or lips (61%) and eating foods with textures they like (52%).
Many respondents had oral repetitive behaviors involving biting their fingers or nails (46%), rubbing, tapping, or picking their lips (42%), licking or sucking their lips (36%), grinding their teeth (33%), chewing or sucking their thumb, other fingers, or hand (31%), eating or drinking things that are very bitter, sour, or spicy (31%), drinking liquid with textures they like (30%), making repetitive mouth movements like blowing raspberries (29%), sucking hard candies (27%), biting other parts of their body (25%), chewing gum (25%), and eating dead skin, scabs, or hair (24%).
Relatively few respondents had oral repetitive behaviors involving eating or drinking things with other strong tastes (19%), chewing or sucking on other objects (16%), chewing or sucking on stim toys (15%), chewing or sucking on clothing (13%), eating non-food items like sand or paper (10%), or biting other people (8%). Almost none had oral repetitive behaviors involving licking objects (4%) or eating fecal waste (1%).
5% had no oral stims within the last month. Two respondents wrote in chewing or sucking their hair. Others wrote in eating boogers, flexing their jaw side to side, running their tongue along their teeth ridges, pressing their tongue into the roof of their mouth, and clacking their teeth.
Compared to those with just ADHD, the autism groups were more likely to have repetitively eaten foods for the texture (44-59% vs 10%), chewed or sucked their cheek, tongue, or lips (58-65% vs 30%), and chewed or sucked their thumb, other fingers, or hand (31-36% vs 0%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have repetitively sucked hard candies (36% vs 10-15%) drunken liquids for the texture (37% vs 0-17%), and ground their teeth (40% vs 10-22%).
In almost all cases, those with both autism and ADHD were the most likely to endorse having had an oral repetitive behavior within the past month, and those with just ADHD were the least likely to endorse a behavior. 5% of those with just autism, 3% with both autism and ADHD, and 20% with just ADHD had not had oral repetitive behaviors within the past month.
Olfactory Ever (After Age 5)
Many respondents had had olfactory repetitive behaviors involving smelling scented candles (48%), smelling perfumes, lotions, or other body products (44%), smelling objects that aren't usually smelled (37%), smelling food or drinks (35%), seeking out strong smells like gasoline (33%), smelling essential oils (31%), smelling animals (27%), or smelling people (21%).
30% had never had olfactory repetitive behaviors. Three wrote in smelling scented stim toys. Others wrote in smelling cat-litter, plants, earwax, a stuffed animal, the air, fingers, or their upper lip.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively smelled essential oils (27-38% vs 0%), smelled perfume, lotion, or other body products (39-52% vs 10%), smelled objects that aren't usually smelled (36-41% vs 0%), smelled animals (20-34% vs 0%), and sought strong smells like gasoline (27-40% vs 0%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have ever repetitively smelled foods or drinks (45% vs 10-24%) and smelled scented candles (58% vs 10-37%).
In all cases, those with both autism and ADHD were the most likely to endorse having had an olfactory repetitive behavior, and those with just ADHD were the least likely to endorse a behavior. 36% of those with just autism, 20% with both autism and ADHD, and 80% with just ADHD had never had a repetitive olfactory behavior.
Olfactory Current (Past Month)
Many respondents had olfactory repetitive behaviors involving smelling food or drinks (27%), smelling perfumes, lotions, or other body products (24%), smelling scented candles (22%), or smelling animals (21%).
Relatively few respondents had olfactory repetitive behaviors involving smelling objects that aren't usually smelled (18%), seeking out strong smells like gasoline (16%), smelling people (15%), or smelling essential oils (10%).
39% had no olfactory repetitive behaviors within the past month. Three wrote in smelling scented stim toys. Others wrote in smelling earwax, a stuffed animal, the air, or their upper lip. One respondent wrote that they can no longer smell.
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have repetitively smelled foods or drinks (35% vs 10-14%) and smelled animals (27% vs 0-13%).
In all cases, those with both autism and ADHD were the most likely to endorse having had an olfactory repetitive behavior within the past month, and those with just ADHD were the least likely to endorse a behavior. 44% of those with just autism, 32% with both autism and ADHD, and 80% with just ADHD had not had olfactory repetitive behaviors within the past month.
Frequency
Almost half of respondents engaged in oral or olfactory repetitive behaviors multiple times a week (10%), once or twice a day (17%), or several times a day (17%). Others engaged less than once a month (5%), once every few weeks (7%), weekly (9%), 25-50% of the time when awake (9%), 50-75% of the time when awake (8%), or almost constantly (7%). 4% said never, and 6% said it varies too much to answer.
There were no significant differences based on autism or ADHD status.
Other Repetitive Behaviors
Ever (After Age 5)
Most respondents had engaged in repetitive drawing (76%), arranging things (71%), games (68%), puzzles (58%), building with Legos, blocks, or similar toys (56%), reading the same thing over and over (56%), crocheting, knitting, sewing, or other yarn crafts (51%), and art other than drawing (51%).
Many respondents had engaged in repetitive math (35%).
2% had no other repetitive behaviors. Others wrote in playing an instrument, writing, gardening, cleaning their nose, diamond painting, making bead jewelry, and visiting specific websites in a specific order.
Compared to those with just ADHD, the autism groups were more likely to have ever repetitively created art other than drawing (48-56% vs 10%), built with toy blocks (53-61% vs 20%), and read the same thing over and over (52-63% vs 20%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have ever repetitively drawn (82% vs 50-67%) and gamed (77% vs 50-52%).
In almost all cases, those with both autism and ADHD were the most likely to endorse having had another repetitive behavior, and those with just ADHD were the least likely to endorse a behavior. 3% of those with just autism, 0% with both autism and ADHD, and 20% with just ADHD had never had another repetitive behavior.
Current (Past Month)
Most respondents had engaged in repetitive arranging things (53%) and games (53%).
Many respondents had engaged in repetitive drawing (48%), reading the same thing over and over (37%), puzzles (36%), art other than drawing (30%), and crocheting, knitting, sewing, or other yarn crafts (25%).
Relatively few respondents had engaged in repetitive math (17%) or building with Legos, blocks, or similar toys (14%).
5% had no other repetitive behaviors within the past month. Others wrote in playing an instrument, gardening, cleaning their nose, diamond painting, making bead jewelry, and visiting specific websites in a specific order.
Compared to those with just ADHD, the autism groups were more likely to have repetitively drawn (41-54% vs 10%), created art other than drawing (28-36% vs 0%), and arranged things (50-58% vs 10%).
Compared to those with just autism or just ADHD, the group with both autism and ADHD was more likely to have repetitively gamed (62% vs 30-41%).
In almost all cases, those with both autism and ADHD were the most likely to endorse having had another repetitive behavior, and those with just ADHD were the least likely to endorse a behavior. 7% of those with just autism, 2% with both autism and ADHD, and 30% with just ADHD had not had another repetitive behavior within the past month.
Frequency
Most respondents engaged in other repetitive behaviors multiple times a week (24%), once or twice a day (17%), or several times a day (18%). Others engaged less than once a month (5%), once every few weeks (6%), weekly (8%), 25-50% of the time when awake (6%), 50-75% of the time when awake (3%), or almost constantly (5%). 3% said never, and 6% said it varies too much to answer.
Those with just ADHD engaged in other repetitive behaviors the least (50% less than weekly, 20% weekly but less than daily, 10% over half the day, 20% unsure). Those with both autism and ADHD had the highest frequency, but those with just autism were very similar (9-16% less than weekly, 32-34% weekly but less than daily, 40-41% daily but less than half the day, 7-12% more than half the day, 5% unsure).
ADHD
Diagnosis
40% of respondents were professionally diagnosed with ADHD. 11% were informally diagnosed by a therapist, and 2% had a special education eligibility for ADHD. 10% were undiagnosed.
6% were unsure if they had ADHD, and 31% knew they did not have ADHD.
The most common types were ADD or primarily inattentive (22%) and combined (22%). Few respondents had primarily impulsive/hyperactive ADHD (3%). 20% were unsure.
Ages of diagnosis were widely distributed. 1% were diagnosed between 3 and 5, 7% between 6 and 8, 7% between 9 and 12, 9% between 13 and 15, 9% between 16 and 18, 8% between 19 and 21, 6% between 22 and 25, 4% between 26 and 30, and 2% after age 31.
Potentially due to low sample sizes, there were no significant differences between those with just ADHD and those with both autism and ADHD.
Severity
Most respondents considered their ADHD moderate (37%) followed by mild (14%) and severe (10%).
Potentially due to low sample sizes, there were no significant differences between those with just ADHD and those with both autism and ADHD.
Interventions
27% of respondents took stimulants for ADHD. 4% took only non-stimulants. 68% took no ADHD medication.
11% of respondents had had therapy to decrease impulsivity or hyperactivity, 84% had not, and 5% were unsure.
Potentially due to low sample sizes, there were no significant differences between those with just ADHD and those with both autism and ADHD.
Autism
Diagnosis
57% of respondents were professionally diagnosed with autism. 15% were informally diagnosed by a therapist, and 2% had a special education eligibility for autism. 19% were undiagnosed.
1% were unsure if they have autism, and 6% knew they did not have autism.
15% had a non-DSM-5 diagnosis, and 23% had ASD with no level. 17% had level 1 ASD, 9% level 2, 2% level 3, 2% split level 1/2, and 2% split level 2/3.
Ages of diagnosis were widely distributed. 1% were diagnosed before age 2, 8% between 3 and 5, 7% between 6 and 8, 9% between 9 and 12, 12% between 13 and 15, 11% between 16 and 18, 9% between 19 and 21, 5% between 22 and 25, 6% between 26 and 30, and 3% after age 31.
Those with just autism were more likely to be formally diagnosed than those with both autism and ADHD (74% vs 55%) and less likely to be undiagnosed (9% vs 26%). They were especially more likely to have ASD with no level (33% vs 19%). Of those with a diagnosis, those with just autism tended to be diagnosed younger than those with both autism and ADHD (5 or younger: 18% vs 9%; 6 to 12: 16% vs 27%; 13 to 15: 42% vs 24%; 19 to 25: 10% vs 27%; 26 or over: 14% vs 12%).
Autism Support Needs
30% considered themselves low support needs, 37% low-moderate, 19% moderate/medium, 4% moderate-high, and 3% high.
Self-identified autism-related support needs were comparable between those with and without ADHD.
Other Demographics
Other Conditions Affecting Repetitive Movement
55% of respondents had an anxiety disorder, 14% had body focused repetitive behaviors, 4% had bipolar disorder, 5% had a schizophrenia spectrum disorder, and 4% had catatonia. 12% weren't sure. 20% responded no. 5 people wrote in OCD, 3 wrote in cerebral palsy, 3 wrote in a dissociative disorder, and others wrote in PTSD, maladaptive daydreaming, tardive dyskinesia, Parkinson's, epilepsy, dyspraxia, cerebral visual impairment, hypermobility syndrome, and chronic illness.
Those with both autism and ADHD were the most likely to have an anxiety disorder (62% vs 44-46%). Those with just ADHD were the most likely to have no other condition potentially affecting repetitive movement (44% vs 14-26%).
Medications Affecting Repetitive Movement
25% of respondents took anti-anxiety medication, 15% mood stabilizers, and 9% anti-psychotics. 6% weren't sure, and 55% responded no. Others wrote in sedatives, anti-depressants, and anti-convulsants.
There were no significant differences based on autism or ADHD status.
Overall Support Needs
22% considered themselves low support needs, 34% low-moderate, 32% moderate/medium, 8% moderate-high, and 4% high.
Those with just ADHD had the lowest overall self-identified support needs (78% low, 11% low-moderate, 11% moderate/medium). Those with autism with and without ADHD were comparable (16-19% low, 35-37% low-moderate, 28-37% moderate/medium, 7-11% moderate/high, 5% high).
Age
24% were between 13 and 18, 20% between 19 and 21, 21% between 22 and 25, 19% between 26 and 30, 13% between 31 and 40, and 4% over 41.
There were no significant differences based on autism or ADHD status.
Sex and Gender
93% were AFAB. Respondents identified as nonbinary or other (36%), women (32%), or men (26%). 6% didn't know their gender.
There were no significant differences based on autism or ADHD status.
Race/Ethnicity
28% were racial/ethnic minorities, including 9% Asian, 7% Hispanic or Latino/a/x, 6% Jewish, 4% Native or Indigenous, 4% Black or African American, 1% Hawaiian or Pacific Islander, and 1% Arab.
There were no significant differences based on autism or ADHD status.
Referral Source
Most respondents found the survey through Reddit (31%) or Tumblr (62%). Others found it through a friend (4%) or Discord (2%).
There were no significant differences based on autism or ADHD status.
I posted a survey a while ago about how autistic people experience what they or their doctors label meltdowns, shutdowns, autistic burnout, autistic catatonia, and late autistic regression. This is a final summary of meltdowns and shutdowns from 177 responses. Burnout, catatonia, and regression will be covered in a later post.
Additionally, this summary contains basic comparisons of self-identified autism-related support needs. 49 respondents (28%) were low support needs (LSN), 59 (34%) low-moderate support needs (LMSN), 47 (27%) moderate/medium support needs (MSN), and 21 (12%) moderate/high or high support needs (HSN). As autism-related support needs increased, meltdowns and shutdowns became more frequent, were more easily triggered, and involved more effects. Additionally, higher support needs were associated with more comorbid conditions.
Finally, this summary contains basic comparisons of individuals with no diagnosis (24; 14%), informal diagnoses (33; 18%), and formal diagnoses with no level (63; 36%), level 1 (24; 14%), and higher level ASD (32; 18%). Patterns across diagnoses were complex. Those with higher level ASD consistently emerged as the group with the most severe and frequent symptoms as well as the most comorbid conditions. Additionally, those with informal diagnoses tended to have relatively higher endorsement of items, and undiagnosed respondents usually had the least severe and least frequent symptoms. Level 1 ASD was also comparatively lower on many items. Overall, differences were smaller and less consistent than for self-identified support needs.
(Results with graphs are under a cut due to length)
Meltdowns
Almost all respondents (90%) reported experiencing meltdowns, and 7% were unsure. Meltdowns were more likely as support needs increased (82% LSN to 95% HSN) and were highest among those with higher level ASD (97%).
The following responses are only based on the respondents who said they have or might have meltdowns.
Experiences
Of those respondents, most reported that their meltdowns usually cause difficulty making decisions (92%), crying (85%), intense stimming (83%), trouble communicating (71%), hitting their bodies (64%), and hitting themselves in the head (52%).
A minority reported that their meltdowns usually make them hurt themselves or other people in ways like hair pulling (49%), hit or throw soft things (43%), elope (42%), bite themselves or other people (40%), scream (40%), have a headache or migraine (40%), bang their head (33%), go completely mute (29%), have intense echolalia (27%), hit or break fragile or heavy things (20%), hit or kick other people (11%), throw up (4%), have a non-epileptic seizure (4%), or urinate or defecate on themselves (2%). Additionally, people wrote in that meltdowns make them experience psychosis, moaning, dizziness, forgetfulness, a sense of doom, suicidality, dissociation, their throat tensing up, irritation, feeling the urge to break things, acid reflux, difficulty breathing, and teeth grinding.
When asked what they had ever experienced because of a meltdown, most respondents reported that their meltdowns have caused crying (97%), difficulty making decisions (95%), intense stimming (91%), hitting their bodies (82%), trouble communicating (81%), headache or migraine (79%), hitting themselves in the head (78%), eloping (78%), hitting or throwing soft things (77%), hurting themselves or other people in ways like hair pulling (73%), screaming (73%), mutism (69%), biting themselves or other people (65%), head banging (63%), intense echolalia (57%), and hitting or breaking fragile or heavy things (54%).
A minority reported that their meltdowns have made them hit or kick other people (49%), throw up (21%), urinate or defecate on themselves (13%), or have a non-epileptic seizure (8%). Additionally, people wrote in that meltdowns have made them experience psychosis, moaning, dizziness, forgetfulness, a sense of doom, suicidality, dissociation, their throat tensing up, irritation, feeling the urge to break things, acid reflux, difficulty breathing, teeth grinding, collapsing, and freezing.
Almost all effects of meltdowns were more common as autism-related support needs increased. The exception is difficulty communicating, which had the inverse pattern and was most common in those with lower support needs.
There were fewer differences based on diagnosis. However, generally, effects were most common for those with higher level ASD or informal diagnoses, in the middle for ASD with no level, and lowest for those with level 1 ASD or those who were undiagnosed. Those with higher level ASD were especially likely to endorse relatively more severe effects like eloping, breaking things, headbanging, or hurting other people. As with support-needs, the main exception was difficulty communicating, which was most common among undiagnosed respondents; however, those with higher level ASD were most likely to become completely mute.
Consequences
Most respondents had been yelled at because of a meltdown (73%), called names or insulted (57%), or gotten into trouble at work or school (55%). A minority had been physically restrained (41%), locked in a room until they calmed down (40%), physically hurt by others (34%), or forcefully medicated (17%). 12% had an ambulance called, and 12% had the police called. 16% had to go to a hospital, and 1% went to prison or jail. 15% experienced no consequences from their meltdowns.
All consequences of meltdowns were more common among those with higher support needs. 24% of those with LSN, 18% with LMSN, 9% with MSN, and 5% with HSN experienced no consequences for their meltdowns.
The highest level of consequences was experienced by those with higher level ASD (for example, 97% were yelled at, 90% insulted, and 38% brought to a hospital because of meltdowns). 23% of undiagnosed respondents, 21% with informal diagnoses, 16% with no level, 18% with level 1, and 0% with higher level ASD experienced no consequences for meltdowns.
Emotions
Meltdowns often made respondents feel scared (80%), angry (74%), confused (72%), or in pain (53%). Others felt exhausted (44%), ashamed or guilty (35%), embarrassed (30%), or numb or detached (25%). Respondents wrote in that during a meltdown, they felt frustrated (4%), overwhelmed (3%), suicidal (2%), sad (2%), upset, like destroying things, out of control, desperate, territorial, dizzy, or sick.
After a meltdown, respondents most often felt exhausted (89%), ashamed or guilty (75%), embarrassed (63%), or numb or detached (60%). Others felt confused (49%), in pain (36%), scared (30%), or angry (13%). Respondents wrote in that after meltdowns, they feel sad (3%), frustrated, suicidal, full of grief, tense, unlovable, humiliated, disgusted, withdrawn, vulnerable, and overstimulated.
Triggers
Meltdown triggers were numerous and included being overwhelmed by demands (91%), sensory overload (86%), being overwhelmed by social situations (79%), major life changes (78%), routine or schedule changes (77%), physical discomfort (71%), getting bad news (62%), trauma reminders (61%), being touched unexpectedly or too much (58%), being bullied (57%), changes in environment (52%), being sick (52%), being interrupted from a special interest (47%), being interrupted from a task in general (45%), being unable to engage with a special interested (45%), or a single really bad sensory stimulus (42%).
Others wrote in being misunderstood (2%), panic attacks, under-stimulation, anxious perseveration, unfairness, chronic pain, too many things happening at once, unfamiliar environments, frustration, interpersonal conflict, being restrained, and being unable to find things.
Almost all potential triggers were more likely to cause meltdowns in those with higher support needs. The same was true for higher level ASD. Patterns were less clear across other diagnostic categories.
Helpful Factors
When respondents had a meltdown, it helped them to go somewhere quiet (82%), go somewhere alone (72%), turn off the lights (65%), use a weighted blanket (56%), do big stims like jumping (55%), wear noise cancelling headphones (54%), listen to music (51%), use sensory toys or fidgets (48%), go somewhere alone with a safe person or trusted friend (46%), do something related to a special interest (45%), do repetitive activities like puzzles (42%), punch a pillow (29%), use sensory lights or lamps (24%), take emergency medication (21%), talk to a friend (20%), use scented candles or things to smell or taste (15%), engage in mindfulness or meditation (8%), or journal (7%). Others wrote in hiding somewhere small (2%), bathing or showering, binaurals, DBT exercises, tight hugs, tiring themselves out, the cause of the meltdown resolving, comfort items, comfort shows, physical exercise, being reassured, praying, being held, stuffed animals, and rest. 5% couldn't think of anything that helps.
Patterns of what helped meltdowns were complex. Some strategies were clearly more helpful for those with higher support needs (sensory lights or lamps, noise cancelling headphones, and big stims), but there were no clear patterns across diagnostic categories.
Duration and Frequency
Respondents said that their meltdowns vary in how long they last (45%) or usually last around half an hour (19%). Others said their meltdowns usually last only a few minutes (7%), around 15 minutes (13%), around an hour (11%), or multiple hours (5%).
Meltdowns increased in duration as autism-related support needs increased. They also lasted longer in all formally diagnosed groups, specifically higher level ASD followed by no level followed by level 1, and they were shortest in those with informal diagnoses.
Meltdowns often become less frequent with age. For example, during ages 13 to 18, 20% of respondents had multiple meltdowns a week, 8% had meltdowns weekly, and 19% had meltdowns a few times a month. For those over age 19, 35% had meltdowns only a few times a year during ages 19 to 22. For ages 23 to 30, among those over age 23, this rose to 44% only having meltdowns a few times a year.
Meltdowns increased in frequency as autism-related support needs increased. When comparing diagnostic categories, meltdowns were most frequent in higher level ASD and least frequent for undiagnosed individuals.
Shutdowns
Most respondents (84%) reported experiencing shutdowns, and 12% were unsure. Shutdowns were more common as autism-related support needs increased (73% LSN to 90% HSN). They were similar among undiagnosed, informally diagnosed, and higher level ASD respondents (91-94%) and least common among those with no level or level 1 ASD (75-79%).
The following responses are only based on the respondents who said they have or might have shutdowns.
Experiences
Of those respondents, most reported that their shutdowns usually cause difficulty making decisions (87%), wanting to hide somewhere alone (82%), feeling disconnected from their body or physical numbness (80%), trouble communicating (78%), feeling disconnected from their emotions (73%), difficulty moving (71%), feeling disconnected from the world (70%), and feeling emotionally numb or apathetic (65%).
A minority reported that their shutdowns usually make them go completely mute (48%), want to hurt themselves to feel connected (42%), completely freeze (40%), completely lose time or black out (29%), or have a headache or migraine (27%). Additionally, respondents wrote in that shutdowns make them cry, have echolalia, feel sleepy, have a seizure, become more easily overwhelmed by sensory stimuli, age-regress, switch between parts of the self, get mentally stuck on a topic, have trouble understanding language, or feel like their skin is prickly.
When asked what they had ever experienced because of a shutdown, most respondents reported that their shutdowns have caused difficulty making decisions (95%), difficulty communicating (93%), feeling disconnected from their body or physical numbness (93%), difficulty moving (90%), feeling disconnected from their emotions (89%), feeling emotionally numb or apathetic (88%), feeling disconnected from the world (88%), wanting to hide somewhere alone (88%), mutism (83%), completely freezing (72%), wanting to hurt themselves to feel connected (68%), completely losing time or blacking out (62%), or headache or migraine (61%). Additionally, respondents wrote in that shutdowns have made them cry, have echolalia, feel sleepy, have a seizure, become more easily overwhelmed by sensory stimuli, mindlessly hurt themself, age-regress, switch between parts of the self, get mentally stuck on a topic, have trouble understanding language, or feel like their skin is prickly.
Effects of shutdowns were more similar across autism-related support needs than were the effects of meltdowns. However, many effects were still more common as support needs increased, especially freezing, blacking out or losing time, and wanting to self-harm to feel more connected. Difficulty communicating had the inverse pattern and was most common in those with lower support needs.
When comparing diagnostic groups, higher level ASD had higher rates of freezing, blacking out, and self-harm, but the same items were variably elevated in informal diagnosis and no level groups. Overall, effects were similar across diagnostic groups or slightly lower in undiagnosed or level 1 respondents.
Consequences
Most respondents had been yelled at because of a shutdown (53%) or gotten into trouble at work or school (52%). Many had been called names or insulted (48%). A minority had been physically hurt by others (14%), locked in a room until they calmed down (13%), physically restrained (7%), or forcefully medicated (7%). 7% had an ambulance called, and 3% had the police called. 9% had to go to a hospital. 28% experienced no consequences from their shutdowns.
All consequences of shutdowns were more common among those with higher support needs. 45% of those with LSN, 24% with LMSN, 21% with MSN, and 11% with HSN experienced no consequences for their shutdowns.
The highest level of consequences was experienced by those with higher level ASD (for example, 79% were yelled at, 79% insulted, and 32% physically hurt because of shutdowns). 50% of undiagnosed respondents, 28% with informal diagnoses, 28% with no level, 23% with level 1, and 14% with higher level ASD experienced no consequences for shutdowns.
Emotions
Shutdowns often made respondents feel numb or detached (81%), confused (66%), or exhausted (58%). Others felt scared (47%), in pain (28%), ashamed or guilty (21%), embarrassed (16%), or angry (12%). Respondents wrote in that during a shutdown, they felt sad (4%), frustrated (2%), miserable (2%), upset, anxious, overwhelmed, tired, hazy, lonely, desperate, anguished, dead, or hopeless.
After a shutdown, respondents most often felt exhausted (75%) or numb or detached (53%). Others felt confused (45%), ashamed or guilty (44%), embarrassed (38%), scared (21%), in pain (14%), or angry (7%). Respondents wrote in that they feel frustrated, overwhelmed, sad, tired, depressed, hopeless, calm, relieved it's over, in a better headspace, or nothing in particular after shutdowns end.
Triggers
The most common shutdown triggers were sensory overload (84%), being overwhelmed by demands (82%), being overwhelmed by social situations (81%), major life changes (62%), physical discomfort (62%), trauma reminders (62%), routine or schedule changes (59%), being bullied (59%), being touched unexpectedly or too much (53%), and getting bad news (52%).
Other shutdown triggers included changes in environment (45%), being sick (45%), being unable to engage with a special interested (41%), being interrupted from a special interest (39%), being interrupted from a task (38%), or a single really bad sensory stimulus (36%). Respondents wrote in that shutdowns could be caused by meltdowns (2%), having to speak in class, being misunderstood, missing medication, frustration, exhaustion, or that they happened without any warning.
Almost all potential triggers were more likely to cause shutdowns in those with higher support needs. There was also a gradient for diagnoses such that undiagnosed individuals were the least likely to endorse potential triggers, followed by informally diagnosed, followed by no level and level 1; those with higher level ASD were the most likely to endorse most potential shutdown triggers.
Helpful Factors
When respondents had a shutdown, it helped them to go somewhere quiet (70%), go somewhere alone (66%), listen to music (56%), go somewhere alone with a safe person or trusted friend (55%), turn off the lights (52%), use a weighted blanket (52%), wear noise cancelling headphones (50%), do something related to a special interest (47%), do repetitive activities like puzzles (46%), use sensory toys or fidgets (36%), use sensory lights or lamps (25%), use scented candles or things to smell or taste (24%), talk to a friend (24%), do big stims like jumping (21%), journal (11%), engage in mindfulness or meditation (7%), take emergency medication (7%), or punch a pillow (4%). Others wrote in sleeping (2%), resting (2%), bathing or showering, doing painful stims, breathing exercises, being talked at without needing to respond, being in a small and cozy space, comfort items, a pet, soft toys, reassurance, food, and distractions like TV. 12% couldn't think of anything that helps.
Patterns of what helped shutdowns were complex. However, some strategies were clearly more helpful for those with higher support needs (sensory lights or lamps, noise cancelling headphones, and emergency medication). Sensory lights or lamps were also most helpful for those with higher level ASD.
Duration and Frequency
Many respondents said that their shutdowns vary in how long they last (40%). Others said their shutdowns usually last only a few minutes (2%), around 15 minutes (8%), around half an hour (10%), around an hour (18%), multiple hours (19%), or multiple days (2%).
Because of the high rate of variability and uncertainty around shutdown lengths, there was no clear pattern across autism-related support needs or diagnostic groups.
Frequency of shutdowns peaked in teenage years (45% weekly or more, 29% at least once a month) and young adult years (42% weekly or more, 28% at least once a month). Frequency then steadily dropped and was lowest over age 30 (30% weekly or more, 10% at least once a month).
Shutdowns increased in frequency as autism-related support needs increased. When comparing diagnostic groups, they were most common in higher level ASD followed by informal diagnosis.
Autism
Diagnosis
Most respondents were diagnosed through a formal evaluation (68%). 14% were diagnosed informally by a therapist, 5% had a special education designation, and 14% were undiagnosed.
13% had a non-DSM-5 diagnosis, and 34% had ASD with no level. 17% had level 1 ASD, 1% split level 1/2, 1% split level 2/1, 10% level 2, 4% split level 2/3, and 3% level 3.
When comparing autism-related support needs, those with LSN and LMSN were the least likely to be formally diagnosed (58-63%) and the most likely to be undiagnosed (17-18%). MSN were more likely to be formally diagnosed (74%, 11% undiagnosed), and HSN were the most likely to be formally diagnosed (90%, 0% undiagnosed). Among those with diagnoses, all LSN had no level (66%) or level 1 ASD (33%), most LMSN had no level (66%) or level 1 ASD (23%), most MSN had no level (55%) or level 2 ASD (32%), and most HSN had no level (35%) or level 3 ASD (30%).
Age of Diagnosis
20% were diagnosed before age 8, 10% between ages 9 to 12, 12% between ages 13 to 15, 18% between ages 16 to 18, 14% between ages 19 to 21, 6% between ages 22 to 25, and 5% after age 26.
The average age of diagnosis increased as autism-related support needs decreased.
Of the diagnosed groups, respondents with level 1 ASD had the oldest average age of diagnosis and those with higher level ASD the youngest.
Autism-related Support Needs
28% of respondents considered their autism low support needs, 34% low-moderate support needs, 27% moderate/medium support needs, 7% moderate-high support needs, and 5% high support needs.
Most respondents with level 1 ASD considered their autism-related support needs low (63%) or low-moderate (33%). Undiagnosed, informally diagnosed, and no level respondents were similar (26-38% low, 35-45% low-moderate, 21-29% moderate). Most respondents with higher level ASD considered their autism-related support needs moderate (47%), moderate-high (22%), or high (19%).
Comorbidities
Neurodevelopmental and Mental Health
Most respondents had an anxiety disorder (71%), depression (57%), and ADHD (57%). Many had PTSD (39%), OCD (36%), a dissociative disorder (30%), a sleep disorder (25%), a specific learning disorder (24%), or an eating disorder (23%).
A minority had a tic disorder (18%), a personality disorder (15%), a schizophrenia spectrum disorder (13%), expressive language impairment (12%), cognitive impairment (11%), receptive language impairment (10%), bipolar disorder (9%), intellectual disability (5%), somatic symptom disorder (5%), or substance use disorder (3%).
Only 5% of respondents had no neurodevelopmental or mental health comorbidity.
Many comorbidities were more common among those with higher autism-related support needs, especially tic disorders, specific learning disorders, intellectual disability, other cognitive impairment, expressive language impairment, receptive language impairment, bipolar disorder, sleep disorder, and PTSD. Across autism-related support needs groups, over 90% of all respondents had at least one neurodevelopmental or mental health comorbidity.
When comparing diagnostic groups, those with higher level ASD were more likely to have a specific learning disorder, intellectual disability, other cognitive impairment, expressive language impairment, receptive language impairment, bipolar disorder, and sleep disorder. Across diagnostic groups, over 90% of all respondents had at least one neurodevelopmental or mental health comorbidity.
Physical Health
Many respondents had a connective tissue disorder (28%), a chronic pain condition (26%), a gastrointestinal disorder or injury (24%), or a post-viral syndrome (21%).
A minority of respondents had a neurological disorder or injury (19%), a musculoskeletal disorder or injury (19%), hearing or vision loss (14%), a lung or respiratory disorder or injury (13%), severe allergies (11%), an autoimmune disorder (11%), a metabolic or endocrine disorder or injury (10%), a skin disorder (9%), a cardiovascular disorder or injury (8%), a reproductive disorder or injury (8%), a blood disorder (6%), a spinal cord or nerve disorder or injury (4%), a renal or urinogenital disorder or injury (4%), immunodeficiency (4%), cancer (1%), limb loss or serious injury (1%), or long-term infectious illness (1%).
19% had no physical health comorbidity.
Many physical comorbidities were more common as autism-related support needs increased, including neurological disorders or injuries, gastrointestinal disorders or injuries, renal or urogenital disorders or injuries, musculoskeletal disorders or injuries, connective tissue disorders, hearing or vision loss, and chronic pain conditions. 34% of those with LSN, 16% with LMSN, 14% with MSN, and 10% with HSN had no physical health comorbidities.
When comparing diagnostic groups, those with higher level ASD were more likely to have neurological disorders or injuries, a connective tissue disorder, and hearing or vision loss. Those with level 1 or higher level ASD were more likely than other groups to have gastrointestinal disorders or injuries. 9% of undiagnosed respondents, 12% with informal diagnoses, 29% with no level, 29% with level 1 ASD, and 10% with higher level ASD have no physical health comorbidities.
Other Demographics
Overall Support Needs
11% of respondents considered their overall support needs low, 28% low-moderate, 34% moderate/medium, 19% moderate-high, and 7% high.
Higher autism-related support needs predicted higher overall support needs.
Most respondents with level 1 ASD considered their overall support needs low (33%) or low-moderate (42%). Most informally diagnosed respondents considered their overall support needs low-moderate (45%), moderate (27%), or moderate-high (15%). Most undiagnosed respondents considered their overall support needs low-moderate (33%), moderate (38%), or moderate-high (21%). Most respondents without a level considered their overall support needs low-moderate (21%), moderate (48%), or moderate-high (13%). Most respondents with higher level ASD considered their overall support needs moderate (25%), moderate-high (41%), or high (25%).
Age
Most respondents were ages 13 to 18 (30%) or 19 to 21 (24%). Others were 22 to 25 (23%), 26 to 30 (17%), or over 31 (6%).
Autism-related support needs decreased with age such that HSN were the youngest group and LSN were the oldest.
Ages were similar across diagnostic groups.
Sex and Gender
Most respondents were assigned female (95%). They identified as nonbinary (38%), women (26%), or men (28%). 8% were unsure of their gender.
Sex did not differ between autism-related support needs, but LSN were the most likely to identify as women (44%), LMSN were the most likely to identify as nonbinary or other (44%), and HSN were the most likely to identify as men (47%).
Sex did not differ between diagnoses, but undiagnosed respondents were the most likely to identify as nonbinary (58%) and the least likely to identify as women (13%).
Race/Ethnicity
31% were racial/ethnic minorities, specifically Asian (8%), Jewish (7%), Black (6%), Native or Indigenous (6%), Hispanic or Latino/a/x (4%), Arab (1%), and Cajun Creole (1%).
Race/ethnicity did not differ across support needs groups or diagnostic groups.
Referral Source
Most respondents found the survey through Tumblr (83%). Others found it through Discord (7%), Reddit (6%), or a friend (3%).
Comparing autism-related support needs groups, LSN were most likely to find the survey through a friend (8%), LMSN through Tumblr (95%), MSN through Reddit (15%), and HSN through Discord (20%).
All undiagnosed respondents found the survey through Tumblr (100%). Informal diagnosis, no level, and level 1 groups were similar. 61% of higher level respondents found the survey through Tumblr, 26% through Discord, and 13% through Reddit.
Autism Identification and Diagnosis, By Autism Diagnosis
This post is comparing 153 responses from my survey on autism identification and diagnosis:
This is a survey to understand what the process of getting an autism diagnosis is like, including suspecting one has autism before or withou
21 respondents (14%) were undiagnosed. 27 (18%) had an informal diagnosis (18 from a therapist, 9 from special education evaluation). 53 (35%) had ASD with no level, 21 (14%) had level 1 ASD, and 30 (20%) had higher level ASD (1 split level 1/2, 2 split level 2/1, 20 level 2, 3 split level 2/3, 4 level 3).
Chi-square tests were considered significant at p < .05.
(Under a read more due to length)
Before Identification
Age at First Suspicion
There were significant differences in rates of suspecting autism prior to being diagnosed. By definition, all of those undiagnosed suspected autism prior to diagnosis. Of the diagnosed groups, 19% with informal diagnoses, 40% without a level, 0% with level 1 ASD, and 31% with higher level ASD didn't suspect autism prior to being diagnosed.
Most of those without a diagnosis began suspecting they had autism before age 13 (24%), when they were 13 to 15 (24%), or when they were 16 to 18 (19%). Most of those with an informal diagnosis began suspecting before age 13 (33%) or when they were 13 to 15 (22%). Most of those without a level began suspecting before age 13 (23%) or when they were 13 to 15 (25%). Most of those with level 1 ASD began suspecting before age 13 (29%) or when they were 13 to 15 (38%). Most of those with higher level ASD began suspecting before age 13 (38%) or when they were 13 to 15 (21%).
Who Suspected
Those with higher level ASD were the most likely to have had their ASD suspected prior to their diagnosis by family other than their parents (37% higher level vs 29% level 1 vs 15-19% all other groups), a teacher (47% vs 19% level 1, 25% no level, 37% informal, 15% undiagnosed), a therapist (50% vs 29% level 1, 19% no level, 41% informal, 15% undiagnosed), a psychiatrist (30% vs 10-14% all other groups), and a pediatrician or other doctor (40-41% higher level and informal vs 10% level 1, 26% no level, 15% undiagnosed).
Undiagnosed respondents were the most likely to have had autism suspected by their friends (65% vs 41% informal, 25% no level, 43% level 1, 27% higher level).
Undiagnosed respondents were the least likely to have had autism suspected by a school counselor (5% vs 26% informal, 8% no level, 14% level 1, 27% higher level).
Reasons for Suspecting Autism
When examining differences that led respondents or their families to suspect autism (i.e., only things that they were aware of before being diagnosed with autism), those with higher level ASD were the most likely to have been aware of difficulty holding a conversation (82% vs 51-63% all other groups), being bullied or abused (93% vs 48% level 1, 28% no level, 74% informal, 33% undiagnosed), having a different tone of voice (61% vs 29% level 1, 32% no level, 48% informal, 14% undiagnosed), obvious stimming (96% vs 60-70% all other groups), difficulty handling transitions (93% vs 65% level 1, 64% no level, 81% informal, 55% undiagnosed), being extremely stubborn (86% vs 55% level 1, 54% no level, 78% informal, 55% undiagnosed), sensitivity to lights and movement (82% vs 40% level 1, 62% no level, 74% informal, 50% undiagnosed), and difficulty with reading or writing (35% vs 9-12% all other groups).
Those with higher level ASD were the most likely, and those with level 1 ASD were the least likely, to have been aware of language delay (43% higher level vs 5% level 1 vs 22-24% all other groups), difficulty talking or using language (61% higher level vs 5% level 1 vs 29-37% all other groups), being taken advantage of (61% vs 14% level 1 vs 32-48% all other groups), echolalia (57% vs 20% level 1, 28% no level, 48-50% no formal diagnosis), difficulty coping with change (89% vs 55% level 1 vs 70-81% all other groups), being picky (82% vs 40% level 1 vs 60-70% all other groups), sensitivity to textures in clothing (93% vs 40% level 1, 68% no level, 81% informal, 55% undiagnosed), having strong interests in specific objects (50% vs 15% level 1 vs 25-34% all other groups), difficulty finding or keeping a job (38% vs 11% level 1 and no level vs 24-28% no formal diagnosis), and difficulty living alone (42% vs 13-16% level 1 and no level vs 24-28% no formal diagnosis).
Those with no level were the least likely to have been aware of strong interests in academic topics (28% vs 45-59% all other groups).
Informally diagnosed individuals were the most likely to have been aware of having strong interests in media (89% vs 71% higher level, 65% level 1, 50% no level, 75% undiagnosed).
Undiagnosed individuals were the most likely to suspect autism because they feel like they're always acting (76% vs 59% informal, 36% no level, 57% level 1, 36% higher level) or feel like they're different from others (100% vs 88% informal, 61-73% all other groups).
Undiagnosed individuals were the least likely to have difficulty making friends (33% vs 81% informal, 70% no level, 81% level 1, 93% higher level) and difficulty keeping friends (52% vs 78% informal, 68% no level, 81% level 1, 82% higher level).
Suspecting autism because of autistic family was most common for those with level 1 ASD (42%) followed by undiagnosed individuals (33%), with all other groups 12-15%. Likewise, suspecting autism because of having multiple autistic friends was most common for those with level 1 ASD or undiagnosed (52-53%) followed by those with informal diagnoses (36%), with those with no level or higher level ASD at 17-19%.
Co-Occurring Conditions
Diagnoses Prior to Autism
Before being diagnosed with autism, those with higher level ASD were the most likely to have an existing diagnosis of language impairment (18% vs 0-9% all other groups) and global developmental delay or intellectual disability (14% vs 0-2% all other groups).
Those with informal diagnoses were the most likely to have a prior diagnosis of social anxiety disorder (61% vs 43% higher level, 15% level 1, 20% no level, 33% undiagnosed), a behavioral or conduct disorder (22% vs 11% higher level, 0-2% all other groups), and sensory processing disorder (30% vs 18% higher level, 0-8% all other groups).
Accordingly, those with informal diagnoses were the least likely to have had no diagnoses prior to autism (4% vs 11% higher level, 33-37% all other groups).
Diagnoses Made At the Same Time As or After ASD
Those with higher level ASD or informal diagnoses were the most likely to have new or suspected diagnoses of an eating disorder (23-24% vs 5-6% all other groups).
Those with informal diagnoses were the most likely to have new or suspected diagnoses of borderline personality disorder (15% vs 0-6% all other groups).
Undiagnosed respondents were the most likely to suspect they have sensory processing disorder (33%) compared to diagnosed respondents having new or suspected diagnoses of sensory processing disorder (24% higher level vs 5-8% all other groups).
Undiagnosed respondents were the most likely to have no suspected conditions other than autism (39%) compared to diagnosed respondents having no suspected or new diagnoses after their autism diagnosis (8-20%). Specifically, undiagnosed respondents were less likely to suspect undiagnosed anxiety (0% vs 22-31% all other groups) and depression (6% vs 40% higher level, 25-27% all other groups).
Ways of Learning About Autism
Before Identification
Before being diagnosed or self-identifying with autism, all undiagnosed individuals knew about autism by definition. Among diagnosed groups, 11% of those informally diagnosed, 35% with no level, 0% with level 1 ASD, and 25% with higher level ASD knew nothing about autism prior to being diagnosed or self-identifying as autistic.
Those with level 1 or informal diagnoses were most likely to have learned from books about autism by professionals (26-29% vs 5-11% all other groups).
Those who were undiagnosed were most likely to have learned about autism from autistic friends (62% vs 48% informal, 23% no level, 43% level 1, 21% higher level) and blog posts by autistic people (62% vs 33% informal, 25% no level, 50-52% level 1 and higher level).
Current
After being diagnosed or self-identifying with autism, those with higher level ASD were the least likely to learn about autism from autistic friends (38% vs 52% level 1, 69-74% all other group).
Those who were undiagnosed were least likely to learn about autism from therapists or doctors (10% vs 33% level 1, 52-56% all other groups).
Time Since Identification or Diagnosis
By definition, those who were undiagnosed had no autism diagnosis, but they had self-identified with autism for a relatively short amount of time (10% under 1 year, 29% 1-2 years, 48% 3-5 years, 10% 6-10 years, 5% over 10 years).
Those with level 1 ASD had been diagnosed the shortest (14% under 1 year, 33% 1-2 years, 24% 3-5 years, 24% 6-10 years, 5% over 10 years).
Those with informal diagnoses were similar (19% under 1 year, 11% 1-2 years, 33% 3-5 years, 22% 6-10 years, 15% over 10 years).
Those with no level had been diagnosed a bit longer (13% under 1 year, 15% 1-2 years, 17% 3-5 years, 17% 6-10 years, 37% over 10 years).
Those with higher level ASD had been diagnosed the longest (10% under 1 year, 7% 1-2 years, 17% 3-5 years, 27% 6-10 years, 40% over 10 years).
What Prevented Earlier Diagnosis
Undiagnosed respondents were the most likely to have had a diagnosis delayed or prevented because of its expense (43% vs 26% informal, 9% no level, 10% level 1, 20% higher level).
Those with informal diagnoses were the most likely to have had a diagnosis delayed or prevented because of bias against gender minorities (30% vs 19% undiagnosed, 2% no level, 10-13% level 1 and higher level), bias against their racial or ethnic group (22% vs 0% undiagnosed, 2% no level, 10% level 1 and higher level), bias against immigrants or people who speak their primary language (15% vs 0-3% all other groups), having been diagnosed with a mental health condition instead (52% vs 19% undiagnosed, 25% no level, 29% level 1, 43% higher level), and acting out and being seen as having a behavioral problem (33% vs 10% undiagnosed, 8% no level, 0% level 1, 27% higher level).
Those with higher level ASD were the most likely to have had a diagnosis delayed or prevented because of medical neglect or abuse (50% vs 33% level 1, 9% no level, 22% informal, 33% undiagnosed).
Those with higher level ASD were the least likely to have had a diagnosis delayed or prevented because of masking too well (17% vs 30% no level, 56-57% all other groups), doing too well at school (27% vs 57% level 1, 51% no level, 78% informal, 62% undiagnosed), being seen as too intellectually gifted (30% vs 67% level 1, 42% no level, 70% informal, 57% undiagnosed), and behaving too well and not causing problems (17% vs 71% level 1, 40% no level, 37% informal, 76% undiagnosed).
Autism Diagnosis
Ever Diagnosed
When comparing diagnosed groups, there were no differences for any pre-DSM-5 diagnoses.
Those without a level were the most likely to have ever been formally or informally diagnosed with ASD without a level specifier (68% vs 52% informal, 0% level 1, 30% higher level).
Those with level 1 ASD were the most likely to have ever been formally or informally diagnosed with level 1 ASD (100% vs 20% higher level, 0% no level, 36% informal).
Those with higher level ASD were the most likely to have ever been formally or informally diagnosed with higher level ASD (100% vs 0% level 1, 2% no level, 24% informal), specifically level 2 (70% vs 0% level 1, 2% no level, 16% informal), level 3 (17% vs 0% all other groups), split level 1/2 (3% vs 0% level 1, 0% no level, 8% informal), split level 2/1 (3% vs 0% all other groups), and split level 2/3 (10% vs 0% all other groups).
Age of Diagnosis
Those with level 1 ASD had the oldest skew for age of diagnosis (0% before 13, 19% between 13 and 15, 33% between 16 and 18, 29% between 19 and 21, 14% between 26 and 30, 5% over 31).
Those with informal diagnoses were the next oldest (8% before age 5, 20% between 6 and 8, 4% between 9 and 12, 20% between 13 and 15, 16% between 16 and 18, 16% between 19 and 21, 8% between 22 and 25, 4% between 26 and 30, 4% over 31).
Those with no level were a bit younger (15% before age 5, 13% between 6 and 8, 13% between 9 and 12, 13% between 13 and 15, 21% between 16 and 18, 11% between 19 and 21, 11% between 22 and 25, 2% over 31).
Those diagnosed with higher level ASD had the youngest skew for age of diagnosis (20% before age 5, 10% between 6 and 8, 13% between 9 and 12, 23% between 13 and 15, 7% between 16 and 18, 17% between 19 and 21, 7% between 22 and 25, 3% over 31).
Told As a Child?
Of those diagnosed as children, there was no difference in whether they were told their diagnosis right away, had it delayed, or were never told.
Process of Diagnosis
Those with an informal diagnosis were the most likely to have been ever assessed by a counselor (48% vs 5-10% all other groups) but the least likely to have been ever assessed by a psychologist (52% vs 63% no level, 87-90% level 1 and higher level).
Those with an informal diagnoses were the least likely to have ever been assessed with a parent-report screening tool (8% vs 32-37% all other groups), a parent interview (4% vs 28-29% no level and level 1, 17% higher level), the ADOS (8% vs 34-43% all other groups), or an adaptive functioning assessment (4% vs 15% no level, 33% level 1, 23% higher level).
Those with level 1 ASD were the most likely to have ever been assessed with a friend-report screening tool (24% vs 0-8% all other groups), IQ testing (57% vs 37% higher level, 23% no level, 19% informal), testing for comorbidities (48% vs 37% higher level, 17% no level, 19% informal), and personality testing (24% vs 10% higher level, 9% no level, 4% informal).
Those with higher level ASD were the most likely to have ever been assessed with a self-report interview (17% vs 0-6% all other groups).
19% of those with informal diagnoses were diagnosed as part of therapy with no specific testing (vs 0% of all other groups).
Therapists Before Diagnosis
There were no significant differences in how many mental health professionals were seen prior to the autism diagnosis.
Feelings About Having Autism
Feelings at the Time of Identification
Undiagnosed respondents were the only group to have not felt sad that there isn't a cure (0% vs 7% informal, 10% no level, 19% level 1, 24% higher level).
Undiagnosed respondents were the most likely to have felt good about themselves because autism explains their struggles (70% vs 48% informal, 33% no level, 52% level 1 and higher level).
Current Feelings
Undiagnosed respondents were the only group to not feel sad that there isn't a cure (0% vs 11-19% all other groups).
Overall Feelings About Autism
Undiagnosed respondents felt the most positively about autism (19% mostly positive, 33% somewhat positive, 48% neutral). Those with informal diagnoses and no level were similar (40-44% positive, 52% neutral, 4-8% negative). Those with level 1 felt a bit more negatively about autism (38% positive, 48% neutral, 14% negative), and those with higher level ASD felt the most negatively (19% positive, 50% neutral, 30% negative).
Other People's Reactions
Disbelief by Professionals
There was no difference in belief from professionals.
Others People's Belief at the Time of Identification
At the time that respondents were first identified as having autism, those without a formal diagnosis were more likely than those with a formal diagnosis to have had their autism disbelieved by their parents (50% vs 25-31%) and one or more friends (35-38% vs 5-17%).
Those with higher level ASD were the most likely to have had their autism disbelieved by extended family (48% vs 20-30% all other groups).
Those without a formal diagnosis were less likely than those with a formal diagnosis to have had their autism believed by everyone (15-23% vs 34-43%).
Other People's Current Belief
Undiagnosed individuals were the most likely to be disbelieved by one or more friends (18% vs 0-8% all other groups).
Undiagnosed individuals were the least likely to be believed by everyone (24% vs 46% informal, 57% no level, 55% level 1, 70% higher level).
Reactions by Others
Those with informal diagnoses were the most likely to be told "you're so inspirational" (41% vs 27% higher level, 14% level 1, 29% no level, 5% undiagnosed).
Those without a formal diagnosis were less likely than those with a formal diagnosis to be told "you're not disabled, just differently abled" (25-33% vs 43% level 1, 52% no level, 60% higher level).
Undiagnosed respondents were the least likely to be told "your autism is a superpower" (25% vs 41% informal, 48-54% formal).
Those with level 1 or no level were the least likely to be told "you're just anxious" (29-33% vs 60-70% all other groups).
Those with level 1 ASD were the least likely to be told "you're not like my child with autism" (0% vs 33% higher level, 17% no level, 44% informal, 20% undiagnosed).
Demographics
Age
There were no significant age differences across groups.
Sex and Gender
Sex did not differ between groups. Undiagnosed individuals were the least likely to identify as women (10% vs 26% informal, 38% no level, 24% level 1, 28% higher level). Those without a level were the least likely to identify as nonbinary (15% vs 45% higher level, 33% level 1, 52% no formal diagnosis).
Race/Ethnicity
There were no significant differences in race/ethnicity.
Autism Identification and Diagnosis, By Time Since Identification
This post is comparing 151 responses from my survey on autism identification and diagnosis:
This is a survey to understand what the process of getting an autism diagnosis is like, including suspecting one has autism before or withou
45 respondents (30%) were diagnosed (including self-diagnosed) as autistic less than 3 years ago (3 under one month, 9 one to six months, 8 seven to eleven months, 25 one to two years). 37 respondents (25%) were diagnosed 3 to 5 years ago. 31 respondents (21%) were diagnosed 6 to 10 years ago. Finally, 37 respondents (25%) were diagnosed over 10 years ago.
Chi-square tests were considered significant at p < .05.
(Under a read more due to length)
Before Identification
Age at First Suspicion
There were significant differences in rates of suspecting autism prior to being diagnosed. 70% of those diagnosed over a decade ago didn't suspect autism prior to being diagnosed, compared to 5-13% in all other groups.
Most of those diagnosed under 3 years ago began suspecting they had autism before age 13 (18%) or when they were 13 to 15 (44%). Most of those diagnosed 3-5 years ago began suspecting before age 13 (41%), when they were 13 to 15 (19%), or when they were 16 to 18 (22%). Most of those diagnosed 6-10 years ago began suspecting before age 13 (53%) or when they were 13 to 15 (23%). Those who were diagnosed over a decade ago and suspected prior to diagnosis first began suspecting before age 13 (5%), between 13 and 15 (11%), between 16 and 18 (8%), or between 19 and 21 (5%).
Who Suspected
There was a gradient such that those diagnosed more recently were more likely to have had autism suspected by their friends (53% under 3 years, 42% 3-5 years, 26% 6-10 years, 16% over 10 years).
Those diagnosed over 10 years ago were the most likely to have had autism suspected by pediatricians or other doctors (49% vs 29% 6-10 years, 17-18% under 6 years).
Those diagnosed 6-10 years ago were the most likely to have had autism suspected by family other than their parents (39% vs 24% over 10 years, 11-16% under 6 years).
Reasons for Suspecting Autism
When examining differences that led respondents or their families to suspect autism (i.e., only things that they were aware of before being diagnosed with autism), there was a gradient for being aware of subtle stimming (86% under 3 years, 81% 3-5 years, 66% 6-10 years, 57% over 10 years) and having always felt different (90% under 3 years, 86% 3-5 years, 76% 6-10 years, 48% over 10 years).
Those diagnosed over a decade ago were the most likely to endorse language delay (44% vs 7% 6-10 years, 22-23% under 6 years).
Those diagnosed over a decade ago were the least likely to endorse feeling like they were always acting (18% vs 66-67% 3-10 years, 53% under 3 years), being exhausted after talking to people (44% vs 74-81% under 10 years), having a strong interest in media (43% vs 69-79% under 10 years), having a strong sense of justice (17% vs 48% 6-10 years, 30% 3-5 years, 40% under 3 years), and having multiple autistic friends (14% vs 34% 6-10 years, 27% 3-5 years, 48% under 3 years).
Those diagnosed 6 to 10 years ago were the most likely to endorse difficulty making friends (96% vs 62% over 10 years, 64% 3-5 years, 77% under 3 years), difficulty keeping friends (93% vs 56% over 10 years, 72-78% under 6 years), difficulty coping with change (93% vs 69% over 10 years, 84% 3-5 years, 62% under 3 years), being extremely stubborn (86% vs 60% over 10 years, 68% 3-5 years, 52% under 3 years), and having strong interests in specific objects (62% vs 14% over 10 years, 26-32% under 6 years).
Co-Occurring Conditions
Diagnoses Prior to Autism
Before being diagnosed with autism, those diagnosed under 6 years ago were the most likely to have an existing diagnosis of ADHD (29-34% vs 10-13% over 6 years ago).
13% of those diagnosed over 10 years ago had a prior diagnosis of global developmental delay or intellectual disability compared to 0-3% of those diagnosed under 10 years ago.
Those diagnosed over 10 years ago were the least likely to have had a prior diagnosis of social anxiety disorder (13% vs 37% 6-10 years, 46% 3-5 years, 33% under 3 years) or depression (26% vs 52-54% under 10 years).
Those diagnosed 6-10 years ago were the most likely to have had a prior diagnosis of a specific learning impairment (23% vs 5-9% all other groups).
Diagnoses Made At the Same Time As or After ASD
Those diagnosed over 6 years ago were the most likely to have since been diagnosed with or begun suspecting that they have a specific learning disorder (29% vs 5-9% under 6 years).
Those diagnosed 6-10 years ago were the most likely to have since been diagnosed with or begun suspecting that they have borderline personality disorder (14% vs 0% over 10 years, 9% 3-5 years, 0% under 3 years).
Those diagnosed under 3 years ago were the most likely to have not received or suspected any new conditions after their autism diagnosis (37% vs 11-14% over 3 years).
Ways of Learning About Autism
Before Identification
Before being diagnosed or self-identifying with autism, 58% of those diagnosed over a decade ago, 21% diagnosed 6-10 years ago, and 2-3% diagnosed under 6 years ago knew nothing about autism.
There was a gradient for learning about autism from autistic friends (51% under 3 years, 41% 3-5 years, 31% 6-10 years, 14% over 10 years), professional sources other than books (56% under 3 years, 49% 3-5 years, 38% 6-10 years, 25% over 10 years), blog posts (58% under 3 years, 49% 3-5 years, 28% 6-10 years, 19% over 10 years), videos (40-41% under 6 years, 17% 6-10 years, 11% over 10 years), and social media (60% under 3 years, 54% 3-5 years, 38% 6-10 years, 22% over 10 years).
Current
After being diagnosed or self-identifying with autism, there were no significant differences in ways of learning about autism.
What Prevented Earlier Diagnosis
There was a gradient for diagnoses being prevented or delayed by long waitlists (54% under 3 years, 44-47% 3-10 years, 31% over 10 years) and behaving too well (62% under 3 years, 48-51% 3-10 years, 33% over 10 years).
Those diagnosed over 6 years ago were the most likely to report that a diagnosis was delayed or prevented because they were assigned female at birth (69-72% vs 54-59% under 6 years) and they were seen as too intellectually gifted (64-68% vs 43-48% under 6 years).
Those diagnosed under 3 years ago were the most likely to report that a diagnosis was delayed or prevented because they did too well in school (83% vs 48-55% over 3 years).
Those diagnosed under 3 years ago were the least likely to report that a diagnosis was delayed or prevented because they were medically neglected (25% vs 50-54% over 3 years).
Those diagnosed over 10 years ago were the least likely to report that a diagnosis was delayed or prevented because they masked too well (19% vs 49-57% under 10 years).
Autism Diagnosis
Diagnosed
Those who were diagnosed with or began self-identifying with autism 3-5 years ago were the least likely to be formally diagnosed (49% formal, 24% informal, 27% undiagnosed), followed by under 3 years (64% formal, 17% informal, 18% undiagnosed), and 6-10 years (74% formal, 20% informal, 6% undiagnosed). Over 10 years was the group most likely to be formally diagnosed (86% formal, 11% informal, 3% undiagnosed).
Current Diagnosis
Among the formally or informally diagnosed respondents, those diagnosed over 10 years ago were the least likely to currently be diagnosed with level 1 ASD (6% vs 27-31% under 10 years ago).
Ever Diagnosed
Among the formally or informally diagnosed respondents, those diagnosed over 10 years ago were the most likely to have ever been diagnosed with Asperger's disorder (28% vs 14% 6-10 years ago, 6-8% under 6 years ago) and PDDNOS or atypical autism (17% vs 4% 3-10 years ago, 0% under 3 years ago).
Told As a Child?
Those diagnosed as children over a decade ago were less likely to be told that they have autism immediately after their diagnosis (44%) compared to those diagnosed as children under a decade ago (64%).
Process of Diagnosis
Those diagnosed with autism over a decade ago were the most likely to have ever been assessed by a medical doctor (42% vs 8-14% 3-10 years, 21% under 3 years).
Those diagnosed over 6 years ago were the most likely to not know who assessed them (11-14% vs 0-4% under 6 years).
Those diagnosed under 3 years ago were the most likely to have ever been assessed with a self-report screening tool (56% vs 33-34% 3-10 years, 19% over 10 years).
Those diagnosed under 3 years ago or over 10 years ago were the most likely to be assessed with a parent interview (31% vs 7-11% 3-10 years).
Therapists Before Diagnosis
Those diagnosed over a decade ago saw the fewest mental health professionals prior to being diagnosed (62% two or fewer, 26% five or more) and those diagnosed under three years ago the most (32% two or fewer, 47% five or more).
Feelings About Having Autism
Feelings at the Time of Identification
Those diagnosed over a decade ago were the least likely to have felt relieved to have an answer (45% vs 72-75% under 10 years), angry that autism wasn't diagnosed sooner (16% vs 41% 6-10 years ago, 52-53% under 6 years), or hopeful of getting help (16% vs 28% 6-10 years, 41-47% under 6 years).
Those diagnosed under 6 years ago were more likely than those diagnosed over 6 years ago to have felt happy to have an autistic identity confirmed (41-50% vs 23-24%).
Those diagnosed over 6 years ago were more likely than those diagnosed under 6 years ago to have felt confused about what autism meant for them (52-55% vs 32-39%).
Current Feelings
Those diagnosed over a decade ago were the most likely to feel good that autism explains their struggles (71% vs 40-51% under 10 years).
Those diagnosed over a decade ago were the least likely to feel angry that they weren't diagnosed sooner (21% vs 47% 6-10 years, 37% 3-5 years, 53% under 3 years).
Overall Feelings About Autism
Those diagnosed over 10 years ago were more likely to feel somewhat (17%) or mostly (3%) negatively about autism compared to those diagnosed under 10 years ago (5-10% somewhat, 0% mostly).
Other People's Reactions
Disbelief by Professionals
Those diagnosed over a decade ago were the least likely to have had their autism doubted by a non-specialist before they were diagnosed with autism (6% vs 23-29% under a decade) but the most likely to have had their autism doubted by a non-specialist after they were diagnosed with autism (23% vs 3-9% under a decade).
Others People's Belief at the Time of Identification
There were no differences in who doubted that respondents had autism when they were first identified as having autism.
Other People's Current Belief
Those diagnosed over 6 years ago were more likely than those diagnosed under 6 years ago to have their autism doubted by one or more of their classmates or colleagues at work (14-16% vs 0-2%).
Reactions by Others
Those diagnosed over a decade ago were the most likely to have been told "you're not disabled, just differently abled" (70% vs 36-40% under 10 years), "your autism is a superpower" (65% vs 47% 6-10 years, 36-38% under 6 years), and "you're so inspirational" (57% vs 33% 6-10 years, 6-13% under 6 years).
Those diagnosed over 6 years ago were more likely than those diagnosed under 6 years ago to have been told "your autism isn't an excuse" (60-62% vs 36-49%).
Those diagnosed 6-10 years ago were the most likely to have been told "you're not trying hard enough" (77% vs 47-53% all other groups).
Demographics
Age
Those diagnosed under 3 years ago and between 3-5 years ago were similar in age (41-44% under 19, 18-24% between 19 and 21, 18-19% between 22 and 25, 11-16% between 26 and 30, 4-5% over 30). Those diagnosed 6-10 years ago were a bit older (29% under 19, 16% between 19 and 21, 32% between 22 and 25, 19% between 26 and 30, 3% over 30). Those diagnosed over a decade ago were the oldest (27% under 19, 24% between 19 and 21, 22% between 22 and 25, 16% between 26 and 30, 11% over 30).
Sex and Gender
Sex did not differ between groups. Those diagnosed under 3 years ago had an almost even split of genders (27% women, 33% men, 33% nonbinary, 7% didn't know). Those diagnosed 3-5 years ago were the most likely to identify as nonbinary (49%). Those diagnosed 6-10 years ago were the most likely to identify as men (43%). Those diagnosed over 10 years ago were the most likely to identify as women (49%) and the least likely to identify as men (19%).
Race/Ethnicity
Those diagnosed over 10 years ago were the most likely to be racial/ethnic minorities (49% vs 20-28% under 10 years).
Autism Identification and Diagnosis, By Age of Diagnosis
This post is comparing 149 responses from my survey on autism identification and diagnosis:
This is a survey to understand what the process of getting an autism diagnosis is like, including suspecting one has autism before or withou
128 respondents had a formal (80%) or informal (20%) autism spectrum disorder diagnosis. Of those, 43 were diagnosed before age 13 ("children"); 45 were diagnosed between ages 13 and 18 ("teens"); and 38 were diagnosed at 19 or older ("adults").
Additionally, 21 respondents were not diagnosed at the time of the survey.
Chi-square tests were considered significant at p < .05.
(Under a read more due to length)
Before Identification
Age at First Suspicion
There were significant differences in rates of suspecting autism prior to being diagnosed. When comparing diagnosed groups, 67% of those diagnosed as children, 11% diagnosed as teens, and 3% diagnosed as adults didn't suspect autism prior to being diagnosed. (By definition, the undiagnosed group suspected autism prior to diagnosis.)
Most individuals diagnosed as teens began suspecting autism before age 13 (38%) or between ages 13 to 15 (42%). Most diagnosed as adults began suspecting autism between ages 13 to 15 (32%), 16 to 18 (16%), or 19 to 21 (16%). Most undiagnosed individuals began suspecting autism before age 13 (24%), between ages 13 to 15 (24%), or between ages 16 to 18 (19%).
Who Suspected
Those diagnosed as children were the most likely to have had autism suspected by their parents (44% vs 36% teens, 13% adults, 25% undiagnosed), a teacher (44% vs 31% teens, 15-18% adults or undiagnosed), or a pediatrician or other doctor (58% vs 13-18% all other groups).
Undiagnosed individuals were the most likely to have had autism suspected by their friends (65%), followed by those diagnosed as teens (47%), adults (37%), and children (9%).
Reasons for Suspecting Autism
When examining differences that led respondents or their families to suspect autism (i.e., only things that they were aware of before being diagnosed with autism), those diagnosed as children were the most likely to endorse language delay (43% vs 24% teens, 8% adults, 24% undiagnosed).
Those diagnosed as adults were the most likely to have had trouble finding or keeping a job (41% vs 24% undiagnosed, 9-12% children or teens) or living alone (44% vs 12-24% all other groups). (Some individuals likely misreported things that happened after their diagnosis, given that it's developmentally appropriate for children to not have jobs or live alone.)
Those without a diagnosis were the most likely to feel like they were always acting (76% vs 59% adults, 49% teens, 30% children), feel different from others (100% vs 83-85% teens and adults, 43% children), and have multiple autistic friends (52% vs 44% adults, 26% teens, 14% children).
Those diagnosed as children were the least likely to have had difficulty dating (5% vs 33-35% all other groups).
Co-Occurring Conditions
Diagnoses Prior to Autism
Before being diagnosed with autism, those without a diagnosis were the most likely to have an existing diagnosis of ADHD (39% vs 30% adults, 22% teens, 10% children).
12-13% of those diagnosed as children or teens had a prior diagnosis of language impairment compared to 0% diagnosed as adults or undiagnosed.
10% of those diagnosed as children had a prior diagnosis of global developmental delay or intellectual disability compared to 0-3% of all other groups.
Those diagnosed as adults were the most likely to have a prior diagnosis of an anxiety disorder other than social anxiety disorder (57% vs 44% teens, 23% children, 28% undiagnosed), depression (70% vs 49% teens, 18% children, 56% undiagnosed), another mood disorder (24% vs 0-7% all other groups), borderline personality disorder (24% vs 2-6% all other groups), and posttraumatic stress disorder (38% vs 15% teens, 5% children, 22% undiagnosed).
Diagnoses Made At the Same Time As or After ASD
Those diagnosed as children were the only respondents to have later been diagnosed with or begun suspecting they have avoidant personality disorder (13% vs 0% all other groups). They were also more likely to later be diagnosed with or suspect language impairment (18% vs 0-6% all other groups), a specific learning disorder (30% vs 6-9% teens and adults, 22% undiagnosed), and depression (40% vs 26% teens, 15% adults, 6% undiagnosed).
Additionally, respondents who were undiagnosed with autism were most likely to suspect but not be diagnosed with sensory processing disorder (33% vs 6% adults, 10-14% teens and children).
No undiagnosed respondents suspected that they had an undiagnosed anxiety disorder other than social anxiety disorder, compared to 24-28% of diagnosed groups being diagnosed with or suspecting anxiety post-autism diagnosis.
Ways of Learning About Autism
Before Identification
Before being diagnosed or self-identifying with autism, 57% of those diagnosed as children, 9% diagnosed as teens, and 0% diagnosed as adults or undiagnosed knew nothing about autism.
Accordingly, those diagnosed as children were the least likely to have previously learned about autism from professional sources (14% vs 47% adults, 57% teens and undiagnosed), blog posts by autistic people (12% vs 49-50% teens and adults, 62% undiagnosed), videos (12% vs 34-35% teens and adults, 43% undiagnosed), and social media autism communities (12% vs 45% teens, 67-68% adults and undiagnosed).
Those without a diagnosis were the most likely to learn from autistic friends (62% vs 51% adults, 27% teens, 17% children).
Current
After being diagnosed or self-identifying with autism, undiagnosed respondents were the least likely to learn about autism through their therapist or doctor (10% vs 41-42% teens and adults, 62% children).
Time Since Identification or Diagnosis
Of those diagnosed as children, 60% were diagnosed over a decade ago and 26% 6 to 10 years ago.
Of those diagnosed as teens, most were diagnosed 1 to 2 years ago (24%), 3 to 5 years ago (33%), or 6 to 10 years ago (20%).
Of those diagnosed ad adults, most were diagnosed 1 to 2 years ago (21%), 3 to 5 years ago (18%), or 6 to 10 years ago (24%).
Of those without a diagnosis, most started self-identifying with autism 1 to 2 years ago (29%) or 3 to 5 years ago (48%).
What Prevented Earlier Diagnosis
(Those diagnosed under age 5 were excluded from this analysis; "children" in this section is only those diagnosed from 6 to 12.)
Those without a diagnosis were the most likely to report that an autism assessment was delayed or prevented by it being too expensive (43% vs 25% adults, 7-9% teens or children).
Those diagnosed as adults were the most likely to report that an autism diagnosis was delayed because they were diagnosed with a mental health disorder instead (47% vs 40% teens, 16% children, 19% undiagnosed) or they masked too well (63% vs 36% teens, 21% children, 57% undiagnosed).
Those diagnosed as children were the only group to report their diagnosis was delayed by bias against immigrants or people who spoke their family's language (12% vs 0% all other groups).
Those diagnosed as children were the least likely to report their diagnosis was delayed because their parents refused to have them assessed (7% vs 33-38% all other groups), they did too well in school (28% vs 62-68% all other groups), they were seen as too intelligent (19% vs 57-67% all other groups), they behaved and didn't cause problems (14% vs 56% teens, 47% adults, 76% undiagnosed), or they seemed normal because they were similar to family members with undiagnosed autism (16% vs 42-52% all other groups).
Autism Diagnosis
Diagnosed
Among the diagnosed groups, there was no difference in if their diagnosis was formal or informal.
Current Diagnosis
Among the diagnosed groups, those diagnosed as children were less likely to be currently diagnosed with level 1 ASD (10% vs 27-32% teens and adults).
Ever Diagnosed
Among the diagnosed groups, those diagnosed as children were most likely to have ever been diagnosed with PDDNOS or atypical autism (17% vs 0-2% teens and adults).
Those diagnosed as children were least likely to have ever been diagnosed with level 1 ASD (14% vs 33-37% teens and adults).
Told As a Child?
21% of those diagnosed as children weren't told about their diagnosis until a few years later, 19% weren't told at all and had to find out on their own, and 33% weren't sure. Only 26% found out immediately. In contrast, 61% of those diagnosed as teens said this question wasn't applicable to them, 32% found out immediately, only 2% had a delay of a year before learning of the diagnosis, and only 5% were never told.
Process of Diagnosis
Those diagnosed with autism as children were the most likely to have ever been assessed by a medical doctor (41% vs 12-13% teens and adults) or to not know who assessed them (17% vs 2-3% teens and adults).
Those diagnosed as children were the least likely to have ever been assessed by a psychologist (54% vs 76-82% teens and adults).
Those diagnosed as children were the least likely to have ever had an autism assessment that included testing for academic achievement, ADHD, or a learning disorder (12% vs 38-42% teens and adults) or testing for comorbid mental health conditions (5% vs 36-42% teens and adults).
Those diagnosed as adults were the most likely to have ever been assessed with a self-report screening tool (66% vs 38% teens, 9% children), a friend-report screening tool (18% vs 0-4% children and teens), and personality testing (24% vs 11% teens, 0% children).
Those diagnosed as adults were the least likely to have ever been assessed with a parent interview (11% vs 23-29% children and teens) or teacher interview or class observation (3% vs 18% teens, 26% children).
Therapists Before Diagnosis
Respondents diagnosed as adults saw the most mental health professionals prior to being diagnosed with autism. 47% saw 6 or more mental health professionals (vs 20-29% children and teens). In contrast, 17-25% of children and teens saw only one mental health professional prior to their diagnosis, but the same was true for only 8% of those diagnosed as adults.
Feelings About Having Autism
Feelings at the Time of Identification
Respondents who weren't diagnosed were the most likely to react to beginning to self-identify with autism by feeling good about themselves because autism explained their struggles (70% vs 54% adults, 44% teens, 29% children).
Those diagnosed as adults were the most likely to react by feeling angry that it wasn't diagnosed sooner (59% vs 38% teens, 26% children, 40% undiagnosed).
Those diagnosed as children were the least likely to react with relief (40% vs 69% teens, 81-88% adults and undiagnosed), happiness (20% vs 35-42% teens and adults, 50% undiagnosed), or feeling hopeful about getting help (14% vs 40-46% teens and adults, 35% undiagnosed).
Those diagnosed as children were the most likely to be confused about what the diagnosis meant for them (63% vs 36-38% teens and adults, 25% undiagnosed).
Current Feelings
Those diagnosed as adults were the most likely to still feel angry that it wasn't diagnosed sooner (58% vs 33% teens, 23% children, 47% undiagnosed).
Overall Feelings About Autism
Respondents without an autism diagnosis were the only group in which all rated their current feelings about autism as positive or neutral (0% negative, 48% neutral, 52% positive). Those diagnosed as children felt the least positively about autism (17% negative, 50% neutral, 33% positive), but those diagnosed as teens or adults were similar (11-13% negative, 49-53% neutral, 37-38% positive).
Other People's Reactions
Disbelief by Professionals
Those diagnosed as children were the most likely to have their autism doubted by a non-specialist after they were diagnosed with autism (23% vs 5-7% teens and adults).
Others People's Belief at the Time of Identification
There were no differences in who doubted that respondents had autism when they were first identified as having autism.
Other People's Current Belief
Those diagnosed as children were the most likely to be disbelieved by strangers in person (32% vs 0% teens, 14% adults, 12% undiagnosed) and strangers online (24% vs 3% teens, 14% adults, 6% undiagnosed).
Those diagnosed as teenagers were the most likely to say everyone currently believes that they have autism (75% vs 51% adults, 41% children, 24% undiagnosed). Likewise, they were the least likely to say they were disbelieved by extended family (3% vs 24% children, 16% adults, 29% undiagnosed).
0% of those diagnosed as children or teenagers doubted that they have autism compared to 8% of those diagnosed as adults and 12% of those undiagnosed.
Reactions by Others
Those diagnosed as children were the most likely to be told "you're not disabled, just differently abled" (71% vs 37-38% teens and adults, 25% undiagnosed), "your autism is a superpower" (64% vs 40-45% teens and adults, 25% undiagnosed), "your autism isn't an excuse" (74% vs 49% teens, 34% adults, 45% undiagnosed), and "you're so inspirational" (43% vs 20-26% teens and adults, 5% undiagnosed).
Those diagnosed as children or teens were more likely to be told "you have autism? That explains so much" (53-57%) than those diagnosed as adults or undiagnosed (30-34%).
Demographics
Age
Those diagnosed as children were youngest (57% under 19, 24% between 19 and 21), followed by those diagnosed as teenagers (47% under 19, 22% between 19 and 21), followed by those undiagnosed (38% under 19, 14% between 19 and 21, 19% between 22 and 25, 24% between 26 to 30). Those diagnosed as adults were oldest (16% between 19 and 21, 39% between 22 and 25, 26% between 26 and 30).
Sex and Gender
Sex and gender did not differ between groups.
Race/Ethnicity
Those diagnosed as children were the most likely to be racial/ethnic minorities (47%), followed by those diagnosed as teens or adults (24-26%), followed by those undiagnosed (15%).
just wanted to let you know, i am not intersex but according to my intersex friend and intersex activism i've seen, the term disorder of sexual development is generally considered offensive. it might be good to replace that with "intersex conditions". :)
Thanks for letting me know! When multiple terms for a concept are available, I usually try to vary them within a post to make sure all preferences are covered, but I don't want to use offensive terms! It looks like InterACT also opposes the term, so I replaced it with intersex.
I posted a survey a few months ago about different proposed "types" of autism presentations. This is a final summary of 188 responses.
The overall summary is:
All respondents had traits that are often said to be signs of "masked autism", and all had traits that are often said to be signs of "unmasked autism".
Most respondents either had no meaningful difference between the percent of traits they had from "masked" compared to "unmasked" autism (28%) or had only small differences (26%).
23 respondents had twice as many "masked" as "unmasked" traits. 18 respondents had twice as many "unmasked" as "masked" traits.
"Masked" autism was significantly more likely to be undiagnosed.
"Unmasked" autism was significantly more likely to be diagnosed as higher level ASD.
"Masked autism" is sometimes called "female" autism or is said to be for autistic people with other marginalized identities, but this was not supported by the data. It was not related to gender or transgender identity. All measured marginalized identities were statistically unrelated to masking or were more strongly associated with "unmasked" autism.
Overall, "masked" versus "unmasked" autism seems to be most strongly associated with autism diagnoses, especially autism support levels.
(Longer summary with graphs under the cut due to length)
Traits Associated with "Masked", "Internalized", "Female", or "Minority" Autism
Almost all respondents reported that they're anxious or sensitive (86%), are creative or love fantasy (77%), have only a few friendships or only shallow friendships (73%), or love animals (71%). Many respondents also reported that they have strong verbal or writing skills (66%), are shy (65%), are a people pleaser (64%), have a strong sense of justice (64%), are diagnosed with general anxiety disorder, depression, or bipolar disorder (64%), are interested in psychology (63%), have a history of being abused or exploited (61%), shut down more often than melt down (58%), have subtle stims like hair twirling (57%), and are unsure who they really are (54%).
A minority of respondents reported that they mirror other people's body language, accents, or opinions (49%), are often perceived as intense (48%), have episodes of mutism (46%), can make friends but not keep them (45%), are obsessed with or collect stuffed animals (45%), are diagnosed with social anxiety disorder (41%), are high masking (39%), have higher empathy (37%), are interested in learning social skills or how to fit in (34%), are diagnosed with posttraumatic stress disorder (33%), or are diagnosed with anorexia or another eating disorder (20%).
Relatively few respondents reported that they make eye contact that's too intense or long (16%), are diagnosed with sensory processing disorder (16%), are obsessed with celebrities or bands (15%), are diagnosed with borderline personality disorder (14%), are obsessed with makeup or fashion (7%), are diagnosed with dependent or avoidant personality disorder (6%), or are obsessed with health or exercise (4%). One respondent wrote-in that they're "well-behaved".
Out of these 32 traits, all respondents had at least 2, and some respondents had as many as 28. The average was 14.40 (standard deviation: 5.17), or 45.01% (standard deviation: 16%) of potential traits.
Traits Associated with "Unmasked", "Externalized", "Male", or "Stereotypical" Autism
Almost all respondents reported that they often or usually don't make eye contact (80%), have obvious stims like rocking or flapping (75%), and are stubborn (71%). Many respondents also reported that they have difficulty with hygiene (65%), wear the same outfit over and over (65%), are blunt (62%), are disconnected from their emotions (alexithymia; 60%), often face away from people while talking to them (54%), are interested in science or math (53%), are often perceived as argumentative (52%), and are often perceived as rude (50%).
A minority of respondents reported that they are obsessed with video games (49%), are diagnosed with attention deficit hyperactivity disorder (47%), have a flat facial expression (43%), are low masking (32%), have low or no empathy (31%), have strong math skills (30%), have a flat or robotic tone of voice (28%), are obsessed with computers or technology (27%), melt down more than shut down (24%), or are obsessed with numbers or statistics (24%).
Relatively few respondents reported that they are uninterested in having friends (19%), are obsessed with trains or transportation (11%), are diagnosed with oppositional defiant disorder, conduct disorder, or intermittent explosive disorder (11%), are not creative (5%), or are diagnosed with schizoid personality disorder (2%). One respondent wrote-in that they're a "savant".
Out of these 26 traits, all respondents had at least 1, and some respondents had as many as 23. The average was 10.71 (standard deviation: 4.02), or 41.18% (standard deviation: 15%) of potential traits.
Ratio of Traits
Some participants endorsed more traits than others, so the best way to understand dominance of one profile compared to another is a ratio of the percentage of traits endorsed from each profile.
Overall, 60% of respondents endorsed a higher percentage of "masked" autism traits, 39% endorsed a higher percentage of "unmasked" autism traits, and 1% had the exact same percentage of traits from both categories. However, 53 respondents (28%) had only weak leanings in one direction or another (a ratio between 0.80 and 1.20). For example, a respondent with a slight leaning towards masked autism (1.16) endorsed 31% of traits from "masked" autism and 27% of traits from "unmasked" autism, which is very similar! In contrast, 45% of respondents had a clear leaning towards "masked" autism (17% between 1.2 and 1.5; 15% between 1.5 and 2.0; 12% over 2.0), and 27% had a clear leaning towards "unmasked" autism (9% between 1.2 and 1.5; 8% between 1.5 and 2.0; 10% over 2.0).
Put differently, only 23 respondents had twice or higher the percentage of "masked" compared to "unmasked" traits, and only 18 respondents had twice or higher the percentage of "unmasked" compared to "masked" traits.
Profile: "Masked" Autism
Of the 23 most extreme responders, 57% still reported that they often or usually don't make eye contact, and 52% reported that they're stubborn. 48% are obsessed with video games. 39% are interested in science or math, wear the same outfit over and over, or have difficulty with hygiene. 35% have ADHD. 30% have obvious stims. 26% are obsessed with numbers or statistics, often don't face people while talking to them, or are disconnected from their emotions. 22% are often perceived as argumentative. 17% are obsessed with computers or technology or have strong math skills. 9% are blunt, have a flat facial expression, or aren't interested in having friends. 4% have low or no empathy.
In contrast, none of the highly "masked" respondents are often perceived as rude, are obsessed with trains or transportation, lack creativity, melt down more often than shutting down, have a flat or robotic tone of voice, are low masking, have schizoid personality disorder, or have oppositional defiant disorder, conduct disorder, or intermittent explosive disorder.
61% were undiagnosed, and 39% had a formal ASD diagnosis (26% level 1 ASD, 4% level 2 ASD, and 9% ASD with no level). 91% were assigned female and 9% male. 39% identified as nonbinary, 35% as men, 22% as women, and 4% didn't know. 18% were racial or ethnic minorities (9% Asian, 9% Jewish, and 5% Hawaiian or Pacific Islander). 4% had PCOS, and 13% suspected they had PCOS. 4% identified as straight, 26% as gay, lesbian, or homosexual, 35% as bisexual, pansexual, or otherwise multigender attracted, 26% as queer or other, and 9% as asexual. 83% had never had a visible physical disability, 9% had a visible disability at the time of the survey, and 9% didn't know. 4% were a religious minority at the time of the survey, 9% were raised as a religious minority, and 87% had never been a religious minority.
Profile: "Unmasked" Autism
Of the 18 most extreme responders, 61% still reported that they're creative or love fantasy, and 56% reported that they're often perceived as intense. 50% love animals and have only a few friends or only shallow friendships. Additionally, 44% have a history of being exploited or abused. 39% are anxious or sensitive. 33% are obsessed with or collect stuffed animals or are interested in psychology. 28% have strong verbal or writing skills, are shy, or have posttraumatic stress disorder. 22% have a strong sense of justice or have general anxiety or a mood disorder. 17% have subtle stims like hair twirling, have episodes of going mute, can make friends but not keep them, or have sensory processing disorder. 11% have social anxiety disorder. 6% are people pleasers, are obsessed with celebrities or bands, shut down more often than melting down, make eye contact too intensely or stare, have high empathy, are unsure who they really are, or have anorexia or another eating disorder.
In contrast, none of the highly "unmasked" respondents are obsessed with health or exercise, are obsessed with makeup or fashion, are interested in learning social skills, mirror other people, are high masking, or have borderline personality disorder, dependent personality disorder, or avoidant personality disorder.
94% had a formal ASD diagnosis, and 6% were informally diagnosed by a therapist (44% no level, 6% level 1, 17% level 2, 22% level 3, 6% split level 1/2, 6% split level 2/3). 87% were assigned female and 13% male. 39% identified as men, 28% as nonbinary, 22% as women, and 11% didn't know. 29% were racial or ethnic minorities (18% Black or African American, 12% Asian, 6% Native or Indigenous, and 6% Hispanic or Latino/a/x). 6% had an intersex disorder, 6% suspected an intersex disorder, 6% suspected PCOS, and 39% weren't sure. 6% were straight, 22% were gay, lesbian, or homosexual, 28% were bisexual, pansexual, or otherwise multigender attracted, 28% identified as queer or other, 6% asexual, and 11% didn't know. 56% had a visible physical disability now and 44% as a child. 28% were a religious minority now and 17% as a child.
Overall Demographics
Most respondents were diagnosed through a formal evaluation (64%). 12% were diagnosed informally by a therapist, and 5% had a special education designation. 19% were self-diagnosed or suspected autism.
14% had a non-DSM-5 diagnosis, and 27% had ASD with no level. 20% had level 1 ASD, 11% level 2, 4% level 3, 1% split level 1/2, and 2% split level 2/3.
19% were diagnosed before age 8, 10% between ages 9 to 12, 13% between ages 13 to 15, 11% between ages 16 to 18, 12% between ages 19 to 21, 7% between ages 22 to 25, and 7% after age 26.
Respondents skewed young. 29% were under 18, 22% between 19 to 21, 23% between 22 to 25, 19% between 26 and 30, 5% between 31 and 40, and 2% over 41.
95% of respondents were assigned female at birth. 40% identified as nonbinary or other, 32% men, and 23% women. 5% were unsure. 66% did not have PCOS or an intersex disorder. 9% were diagnosed with PCOS, 6% suspected they had PCOS, 2% were diagnosed with an intersex condition other than PCOS, and 6% suspected they had an intersex condition other than PCOS. 10% didn't know.
4% identified as straight or heterosexual, 20% gay, lesbian or homosexual, 20% bisexual, pansexual, or otherwise multigender attracted, 27% as queer or other, 26% asexual, and 3% didn't know.
Most respondents had never had a visible physical disability (70%). 22% had a visible physical disability now, and 9% had had a visible physical disability as a kid. 6% were unsure now, and 9% were unsure as a kid.
30% of respondents were racial/ethnic minorities, including 10% Asian, 7% Black or African American, 6% Native or Indigenous, 5% Hispanic or Latino/a/x, 4% Jewish, 2% Hawaiian or Pacific Islander, and 1% North African. 21% were a religious minority at the time of the survey, 12% had been raised as a religious minority, and 75% had never been a religious minority.
Most respondents found the survey through Tumblr (82%). Others found it through Reddit (12%), a friend (3%), and Discord (2%).
Demographic Differences
There were no significant differences by gender group or by trans status. Nonbinary individuals had the highest proportion of "masked" (65%) versus "unmasked" (35%) autism, but men and women were almost identical, and nothing was statistically meaningful.
Across diagnostic groups, respondents with informal autism diagnoses endorsed the highest average number of "masked" autism traits (16.52), followed by undiagnosed respondents (15.09), respondents with level 1 ASD (14.5), respondents with higher level ASD (14.04), and, finally, respondents with no level (13.11). Respondents with higher level ASD endorsed the highest average number of "unmasked" autism traits (13.57), followed by those with informal diagnoses (11.61), those with no level (11.16), those with level 1 ASD (9.5), and, finally, undiagnosed respondents (8.06). Overall, 89% of undiagnosed respondents leaned towards "masked" autism; 73% of respondents with level 1 ASD leaned towards "masked" autism; 64% of informally diagnosed respondents leaned towards "masked" autism; respondents with no level were evenly split between "masked" and "unmasked" autism; and 68% of respondents with higher level ASD leaned towards "unmasked" autism. These differences were significant.
There weren't enough straight respondents to analyze by sexual minority status.
Those who had ever had a visible physical disability endorsed a lower number of "masked" autism traits (12.48) and a higher number of "unmasked" autism traits (11.90) compared to those who had never been visibly physically disabled (masked: 14.73; unmasked 10.22). Overall, 36% of individuals who had ever had a visible physical disability leaned towards "masked" autism and 62% "unmasked" autism, and 67% of individuals who had never been visibly physically disabled leaned towards "masked" autism and 33% "unmasked" autism. These differences were significant.
Racial/ethnic minority respondents reported a higher number of both "masked" autism traits (14.93) and a higher number of "unmasked" autism traits (11.91) compared to those who were white (masked: 14.28; unmasked 10.29). Overall, racial/ethnic minority respondents were evenly split between "masked" autism and "unmasked" autism, and 65% of white respondents leaned towards "masked" autism and 35% "unmasked" autism. These differences were significant.
There were no significant differences by religious minority status.
There's an option on the surveys for people that found it on Instagram. What's the name of the Instagram account? I have a friend on there who I wanna send the surveys to but it's easier for me to send them an account than the individual surveys
Sorry for being unclear! I don't use Instagram. I only post these surveys on Reddit and Tumblr. However, someone in the past asked to share a survey on Instagram, so I added that option for them!
If you want to send your friend all of the active surveys at once, you can share this account's pinned post! Right now, this post is also up-to-date (and a lot shorter!), although I'm about to close down the survey about autism phenotypes.
Anyone is also welcome to post something linking to the surveys on other social media platforms if they want to make sure that people they know have the chance to participate!
Anon from here, I was mostly thinking about the question of "did you attend [xyz] type of schooling" and who selects what based on age and/or diagnosis, but I've realized a question about how aware people are of alternate schooling could be interesting.
Something akin to "do you know anyone/have you heard of (for example) schools for autism"
While I'm asking about school, I plan to ask a lot of questions about school experiences! For example, what type of classes people took, what accommodations people got, and if they think that the type of school that they attended was a good fit for them.
I can ask about awareness of different types of schools!
Have you done/considered doing a survey about schooling in autism? I noticed that growing up a lot of my autistic peers (including myself) went to specialized schools for autism but these days most autistic people I talk to online don't even know these exist.
This is a good idea, thank you! Do you have any specific questions you want asked? I put together a draft, but I'm still open to additions!
Just to let you know, it will be a while before the survey is posted. I want to close out a few surveys before I post new ones. I also have a few other surveys that I want to post at some point (for example, about experiences disclosing autism to others).
Stimming, Fidgeting and Other Repetitive Behaviors in People with Autism or ADHD, by Autism Status
This post is comparing 158 responses from my survey on stimming, fidgeting, and other repetitive behaviors in autism and ADHD:
This is a survey to understand stimming, fidgeting, and other repetitive movements in autism and ADHD. This survey is just for fun, not rese
Of the respondents included here, 54 (34%) have low support needs from autism (LSN), 58 (37%) have low-moderate support needs from autism (LMSN), and 46 (29%) have moderate (33), moderate-high (7), or high (6) support needs from autism (HrSN).
Additionally, 34 (22%) were undiagnosed, 28 (18%) were informally diagnosed, 43 (28%) had autism without a level specifier, 25 (16%) had level 1 autism spectrum disorder, and 25 (16%) had a higher level autism spectrum disorder diagnosis. (Note that the smaller group sizes mean large differences are needed for significant findings based on diagnosis.)
Chi-square tests were considered significant at p<.05.
Because this post is so long, a brief summary:
Individuals with higher self-reported autism-related support needs had more frequent repetitive behaviors in public and private; used repetitive behaviors more for self-regulation; felt less in control of when and how they made repetitive behaviors; and experienced more social and non-social consequences for their repetitive behaviors. They were more likely to endorse a wide range of repetitive behaviors, especially visual, tactile, and oral repetitive behaviors. Higher self-reported support needs were also associated with more frequent visual and "other" repetitive behaviors.
There were some more "normative", potentially masked, repetitive behaviors that were most common in those self-identifying as having low-moderate support needs, such as repetitively singing, dancing, shaking their leg, licking their lips, smelling perfume, or drawing. Individuals with low-moderate support needs were also the most likely to increase their repetitive behaviors when with others making repetitive behaviors. In general, individuals with self-reported low-moderate support needs were more likely to endorse repetitive behaviors than those with low support needs.
Individuals with higher autism-related support needs were more likely to be formally diagnosed with autism, had higher level diagnoses, and had higher overall support needs. They were more likely to be taking anti-psychotic medication. Individuals with self-reported low support needs were the least likely to have a disorder other than autism or ADHD which might affect repetitive movements.
When examining diagnostic categories, individuals with higher level diagnoses had the most frequent repetitive behaviors in public; felt the least in control of when and how they made repetitive behaviors; and experienced the most social and non-social consequences for their repetitive behaviors. Fewer repetitive behaviors were uniquely elevated for individuals with higher level diagnoses compared to those with higher self-reported support needs, but behaviors that were elevated tended to be strongly associated with stereotypical autism (e.g., shaking hands in front of the eyes; lining up objects; yelling or screaming; hitting themself or head banging; flapping; chewing or sucking on stim toys or their clothing). Higher level diagnoses were also associated with more frequent visual and tactile/proprioceptive repetitive behaviors.
As above, individuals with informal or no autism diagnoses were more likely to have elevated repetitive behaviors that might be seen as more "normative" or potentially masked, such as repetitively listening to music and podcasts, swinging, biting their nails, and smelling perfume. Individuals with level 1 diagnoses often endorsed fewer repetitive behaviors than other groups. Those with level 1 ASD or no autism diagnosis had the most control over their repetitive behaviors and experienced the fewest consequences. Those with no autism diagnosis or an informal diagnosis tended to have the least frequent repetitive behaviors. All three of these groups (undiagnosed, informally diagnosed, and level 1) were more likely to report that they increase their repetitive behaviors when they feel comfortable unmasking.
Individuals without an autism diagnosis or with higher level ASD were the most likely to be formally diagnosed with ADHD. Those informally diagnosed with ASD were also likely to be informally diagnosed with or suspect ADHD. ADHD medication was taken most often by those undiagnosed with autism, followed by those with level 1 or higher level ASD.
Individuals with higher level ASD had the highest autism-specific and overall support needs, followed by those with no level or an informal diagnosis. Those with level 1 ASD self-reported the lowest autism-specific and overall support needs. Those with level 1 ASD had the latest age of ASD diagnosis for all diagnosed groups, and those with no level had the youngest age of diagnosis.
Individuals with higher level ASD were most likely to have bipolar disorder or catatonia and to be taking anti-psychotic medication. Individuals with an informal ASD diagnosis were the most likely to have an anxiety disorder. Individuals with level 1 ASD were the least likely to have a disorder other than autism or ADHD which might affect repetitive movements.
(Full analysis under the cut:)
Overall Stimming, Fidgeting, or Repetitive Behaviors
Frequency: Private
When comparing stimming, fidgeting, or other repetitive behaviors in private, there were significant difference across autism support needs. Those with LSN had the least repetitive behaviors in private (0% less than daily, 44% less than half of the day, 54% more than half of the day), followed by LMSN (0% less than daily, 21% less than half of the day, 72% more than half of the day), and HrSN the most (0% less than daily, 11% less than half of the day, 83% more than half of the day).
There were no significant differences by diagnosis.
Frequency: Public
When comparing stimming, fidgeting, or other repetitive behaviors in public, there were significant difference across autism support needs. Those with LSN had the least repetitive behaviors in public (19% less than daily, 48% less than a quarter of the day, 11% one quarter to one half of the day, 22% more than half of the day), followed by LMSN (21% less than daily, 33% less than a quarter of the day, 24% one quarter to one half of the day, 16% more than half of the day), and HrSN the most (4% less than daily, 38% less than half of the day, 51% more than half of the day).
There were significant differences by diagnosis. Of undiagnosed individuals, 24% had repetitive behaviors in public less than daily, 56% less than half the day, and 15% more than half the day. Of informally diagnosed individuals, 14% had repetitive behaviors in public less than daily, 54% less than half the day, and 32% more than half the day. Of diagnosed individuals with no level specifier, 9% had repetitive behaviors in public less than daily, 58% less than half the day, and 23% more than half the day. Of individuals diagnosed with level 1 ASD, 28% had repetitive behaviors in public less than daily, 52% less than half the day, and 20% more than half the day. Finally, of individuals diagnosed with higher level ASD, 4% had repetitive behaviors in public less than daily, 33% less than half the day, and 58% more than half the day.
Changes Over Time
Changes in frequency and visibility of repetitive behaviors since childhood were comparable across all groups.
Reasons for Repetitive Behaviors
There was a gradient of support needs regarding using repetitive behaviors to regulate emotions (68% LSN, 79% LMSN, 93% HrSN), to regulate sensory overload (51% LSN, 64% LMSN, 80% HrSN), and because it's painful not to (30% LSN, 53-55% LMSN and HrSN).
Individuals with higher level diagnoses were the most likely to use repetitive behaviors to regulate emotions (100% vs 79-80% no level and level 1, 71-75% undiagnosed and informally diagnosed).
Reasons for Increased Repetitive Behaviors
There was a gradient of support needs regarding repetitive behaviors increasing in response to any intense emotions (62% LSN, 76% LMSN, 84% HrSN), bad sensory input (46% LSN, 64% LMSN, 80% HrSN), sensory overload (50% LSN, 62% LMSN, 76% HrSN), and feeling unheard or misunderstood (37-41% LSN and LMSN, 62% HrSN). Individuals with LMSN were the most likely to report increased repetitive behaviors when with other people who are making repetitive movements or sounds (60% vs 27% LSN, 53% HrSN).
Those with higher level or no level diagnoses were the least likely to make more repetitive behaviors because of feeling comfortable unmasking (48-50% vs 71-75% undiagnosed, informal diagnosis, and level 1).
Sense of Control
Those with LSN autism had the most control over when they made repetitive movements or noises (4% completely, 72% mostly, 22% not very), followed by those with LMSN autism (5% completely, 66% mostly, 26% not very, 2% not at all); those with HrSN autism had the least control (0% completely, 42% mostly, 47% not very, 9% not at all).
Those with LSN autism had the most control over what repetitive movements or noises they made (19% completely, 59% mostly, 20% not very), followed by those with LMSN autism (10% completely, 62% mostly, 24% not very, 2% not at all); those with HrSN autism had the least control (0% completely, 40% mostly, 47% not very, 9% not at all).
Those with level 1 ASD had the most control over when they made repetitive movements or noises (84% completely or mostly, 12% not very or not at all), followed by undiagnosed individuals (76% completely or mostly, 24% not very or not at all), those with an informal diagnosis (64% completely or mostly, 36% not very or not at all), and those without a level (56% completely or mostly, 40% not very or not at all). Those with higher level ASD had the least control (42% completely or mostly, 58% not very or not at all).
Those without a diagnosis had the most control over what repetitive movements or noises they made (82% completely or mostly, 15% not very or not at all), followed by those with level 1 ASD (76% completely or mostly, 24% not very or not at all), those with an informal diagnosis (64% completely or mostly, 36% not very or not at all), and those without a level (60% completely or mostly, 33% not very or not at all). Those with higher level ASD had the least control (38% completely or mostly, 63% not very or not at all).
Other People's Acceptance of Repetitive Behaviors
Across self-reported support needs, there were significant differences in acceptance for repetitive behaviors from family (LSN: 34% very accepting, 40% somewhat accepting, 19% not at all accepting; LMSN: 22% very accepting, 69% somewhat accepting, 3% not at all accepting; HrSN: 31% very accepting, 49% somewhat accepting, 16% not at all accepting).
Across diagnostic groups, there were significant differences in acceptance for repetitive behaviors from teachers or bosses (undiagnosed: 3% very accepting, 50% somewhat accepting, 15% not at all accepting; informal diagnosis: 4% very accepting, 25% somewhat accepting, 25% not at all accepting; no level: 7% very accepting, 33% somewhat accepting, 2% not at all accepting; level 1: 13% very accepting, 33% somewhat accepting, 13% not at all accepting; higher level: 21% very accepting, 13% somewhat accepting, 8% not at all accepting).
Other People's Negative Reactions to Repetitive Behaviors
There was a gradient of support needs regarding other people reacting negatively to repetitive behaviors by yelling at the autistic individual (33%-37% LSN and LMSN, 70% HrSN), insulting the autistic individual (30% LSN, 49% LMSN, 74% HrSN), punishing the autistic individual at school or work (43-44% LSN and LMSN, 76% HrSN), punishing the autistic individual for touching people without their permission (2% LSN, 14-15% LMSN and HrSN), punishing the autistic individual for doing something unsafe or dirty (9% LSN, 30% LMSN, 39% HrSN), physically restraining the autistic individual (6% LSN, 12% LMSN, 30% HrSN), hurting the autistic individual (6% LSN, 14% LMSN, 33% HrSN), calling the police or having the autistic individual sent to prison or jail (0-2% LSN and LMSN, 17% HrSN), calling an ambulance or having the autistic individual go to the hospital (0-2% LSN and LMSN, 13% HrSN), forcing the autistic individual onto medication (0-2% LSN and LMSN, 15% HrSN), forcing the autistic person into therapy or ABA to make them stim in smaller or more private ways (0% LSN and LMSN, 11% HrSN), forcing the autistic person into therapy or ABA to make them stim in safer or cleaner ways (2-4% LSN and LMSN, 13% HrSN), and forcing the autistic person into therapy or ABA for impulse control or to be less hyperactive (2-4% LSN and LMSN, 13% HrSN).
Individuals with higher level diagnoses were the most likely to have been yelled at (68% vs 57% informal diagnosis, 48% level 1, 38% no level, 32% undiagnosed), been insulted (80% vs 57% no level, 50% informal diagnosis, 40% level 1, 29% undiagnosed), been punished at work or school (80% vs 64% informal diagnosis, 44% level 1, 38% no level and undiagnosed), been punished for doing something unsafe or dirty (48% vs 31% no level, 21% informal diagnosis and undiagnosed, 4% level 1), been physically hurt by someone else (40% vs 19% informal diagnosis, 17% no level, 8% level 1, 3% undiagnosed), had the police called on them (32% vs 0-4% other groups), had an ambulance called on them (28% vs 0% all other groups), been forcefully medicated (20% vs 0-3% other groups), been forced onto medication long-term (20% vs 0-5% other groups), had therapy or ABA to stim less (24% vs 12% undiagnosed, 4-5% other groups), had therapy or ABA to stim in smaller or more private ways (12% vs 0-2% other groups), and had therapy or ABA to stim in safer or cleaner ways (20% vs 0-6% other groups).
Other Consequences of Repetitive Behaviors
There was a gradient of support needs regarding consequences for repetitive behaviors: being unable to stop moving in order to fall asleep (34% LSN and LMSN, 61% HrSN), being unable to cook safely (4-5% LSN and LMSN, 20% HrSN), being unable to use tools or appliances safely (8-9% LSN and LMSN, 43% HrSN), breaking objects (28% LSN and LMSN, 50% HrSN), hurting themself a little (66% LSN, 90% LMSN, 96% HrSN), hurting themself moderately (22-23% LSN and LMSN, 52% HrSN), hurting themself badly enough to need a doctor (0-3% LSN and LMSN, 30% HrSN), hurting themself so badly they had to go to the hospital or had permanent damage (0% LSN and LMSN, 11% HrSN), and hurting someone else (0% LSN, 9% LMSN, 30% HrSN).
17% of individuals with LSN autism had no non-social consequences for their repetitive behaviors compared to 7% of LMSN and 2% of HrSN.
Those with higher level diagnoses were the most likely to be experience consequences for repetitive behaviors, specifically being unable to use tools or appliances safely (40% vs 14-19% undiagnosed, informal diagnosis, and no level, 4% level 1), hurting themselves a little (96% higher level and informal diagnosis vs 88% no level, 71% undiagnosed, 64% level 1), hurting themselves moderately (64% vs 24-28% all other groups), hurting themselves badly (36% vs 4-11% all other groups), hurting themselves very badly (12% vs 0-4% all other groups), and hurting someone else (36% vs 0-14% all other groups).
18% of individuals without an autism diagnosis had no non-social consequences for their repetitive behaviors compared to 16% with level 1 ASD, 10% with no level, and 0% with informal or higher level diagnoses.
Visual Repetitive Behaviors
Ever
There was a gradient of support needs regarding having ever repetitively looked at bright lights (28% LSN, 36% LMSN, 52% HrSN), looked at sensory lamps or special projectors (30% LSN, 45% LMSN, 70% HrSN), looked at "busy", crowded, or patterned things (26% LSN, 45-48% LMSN and HrSN), turned lights on and off again (22% LSN, 31% LMSN, 46% HrSN), watched non-repeating movement (11% LSN, 22% LMSN, 37% HrSN), watched videos or TV (37% LSN, 43% LMSN, 61% HrSN), looked at specific colors (17% LSN, 29% LMSN, 43% HrSN), shaken, flapped, or twisted hands, fingers, or objects near their eyes (43% LSN, 50% LMSN, 76% HrSN), looked at objects from different angles (26% LSN, 59-60% LMSN and HrSN), lined up objects (37% LSN, 66% LMSN, 80% HrSN), and blinked a lot or very quickly (37% LSN, 55% LMSN, 67% HrSN).
13% of those with LSN autism had never had visual repetitive behaviors compared to 2% of LMSN and HrSN autism.
Individuals with higher level diagnoses were the most likely to have ever repetitively shaken, flapped, or twisted their hands, fingers, or objects near their eyes (76% vs 56-60% no level and level 1, 50% informal diagnosis, 35% undiagnosed) and lined up objects (80% vs 68-72% informal diagnosis and level 1, 47-51% no level and undiagnosed).
Individuals with informal diagnoses were the most likely to have ever repetitively watched non-repeating movement (43% vs 28% higher level, 21% no level, 12-15% level 1 and undiagnosed) and looked at objects from different angles (71% vs 64% higher level, 40-41% undiagnosed and no level, 32% level 1).
Current (Past Month)
There was a gradient of support needs regarding having repetitively looked at bright lights (7-11% LSN and LMSN, 30% HrSN), looked at light filtering through or reflecting off of other objects (22-26% LSN and LMSN, 50% HrSN), looked at sensory lamps or special projectors (9-13% LSN and LMSN, 41% HrSN), watched spinning or rotating objects (32-36% LSN and LMSN, 57% HrSN), watched videos or TV (24-26% LSN and LMSN, 59% HrSN), shaken, flapped, or twisted hands, fingers, or objects near their eyes (28-34% LSN and LMSN, 61% HrSN), looked at objects from different angles (13% LSN, 28-35% LMSN and HrSN), and lined up objects (13% LSN, 40-41% LMSN and HrSN) within the last month.
15% of those with LSN autism hadn't had visual repetitive behaviors within the last month compared to 2-5% of LMSN and HrSN autism.
Individuals with higher level diagnoses were the most likely to have repetitively shaken, flapped, or twisted their hands, fingers, or objects near their eyes (56% vs 51% no level, 43% informal diagnosis, 29% level 1, 18% undiagnosed) within the last month.
Individuals with informal diagnoses were the most likely to have repetitively turned lights on and off again (21% vs 12% higher level, 0-4% other groups) within the last month.
Frequency
Those with LSN autism had less frequent visual repetitive behaviors (28% less than weekly, 22% weekly but less than daily, 41% less than half the day, 4% more than half the day) followed by LMSN (17% less than weekly, 34% weekly but less than daily, 36% less than half the day, 4% more than half the day), with HrSN having the most frequent (7% less than weekly, 13% weekly but less than daily, 57% less than half the day, 13% more than half the day).
There were significant differences by diagnosis. Of undiagnosed individuals, 24% had visual repetitive behaviors less than weekly, 38% weekly but less than daily, 24% less than half the day, and 3% more than half the day. Of informally diagnosed individuals, 18% had visual repetitive behaviors less than weekly, 14% weekly but less than daily, 61% less than half the day, and 4% more than half the day. Of individuals with no level specifier, 23% had visual repetitive behaviors less than weekly, 23% weekly but less than daily, 44% less than half the day, and 2% more than half the day. Of individuals with level 1 ASD, 16% had visual repetitive behaviors less than weekly, 28% weekly but less than daily, 48% less than half the day, and 4% more than half the day. Of individuals with higher level ASD, 0% had visual repetitive behaviors less than weekly, 16% weekly but less than daily, 48% less than half the day, and 20% more than half the day.
Audio Repetitive Behaviors
Ever
There was a gradient of support needs regarding having ever repetitively listened to nature sounds (24% LSN, 41% LMSN, 50% HrSN), made animal noises (37% LSN, 63-64% LMSN and HrSN), and yelled or screamed (13% LSN, 26% LMSN, 43% HrSN). Additionally, those with LMSN repetitively sung the most (74% vs 50% LSN, 63% HrSN).
Individuals with informal diagnoses or who were undiagnosed were the most likely to have ever repetitively listened to a song or a part of a song (96-100% vs 88-91% level 1 and higher level, 79% no level), listened to music in general (93-94% vs 92% level 1, 76% higher level, 70% no level), and listened to podcasts or talk radio (50% vs 32% level 1 and higher level, 16% no level).
Current (Past Month)
There was a gradient of support needs regarding having repetitively repeated a word or phrase over and over (34% LSN, 55% LMSN, 63% HrSN) and yelled or screamed (9% LSN, 12% LMSN, 39% HrSN) within the last month. Additionally, those with LMSN repetitively sung the most (64% vs 36% LSN, 50% HrSN).
Individuals with higher level diagnoses were the most likely to have repetitively yelled or screamed (48% vs 21% informal diagnosis, 12-13% all other groups) within the last month.
Individuals with informal diagnoses were the most likely to have repetitively listened to a song or a part of a song (93-96% informal diagnosis and level 1 vs 74-76% no level and higher level, 65% undiagnosed), listened to music in general (93% vs 76-79% undiagnosed and level 1, 60-64% no level and higher level), beatboxed or rapped (14% vs 0-4% all other groups), recited strings of numbers (21% vs 19% no level, 12% higher level, 0-4% level 1 and undiagnosed), and drummed on something (64% vs 50% undiagnosed, 38% level 1, 30-32% no level and higher level) within the last month.
Frequency
Frequency of audio repetitive behaviors was comparable across groups.
Tactile or Proprioceptive Repetitive Behaviors
Tactile Ever
There was a gradient of support needs regarding having ever repetitively touched or rubbed fabrics or clothing (74% LSN, 84% LMSN, 96% HrSN), touched or rubbed other soft surfaces (67% LSN, 76% LMSN, 91% HrSN), touched something warm or hot (33% LSN, 62% LMSN, 67% HrSN), squeezed or applied pressure to part of their body (63% LSN, 78% LMSN, 87% HrSN), hugged or squeezed a person, pillow, or pet (65% LSN, 84% LMSN, 91% HrSN), petted or stroked an animal (56% LSN, 78-81% LMSN and HrSN), petted or stroked another person (20% LSN, 28% LMSN, 50% HrSN), rubbed their thighs or legs (44% LSN, 55% LMSN, 74% HrSN), rubbed their scalp or face (50% LSN, 43% LMSN, 76% HrSN), hit their body (48% LSN, 66% LMSN, 85% HrSN), and hit their face (24% LSN, 36% LMSN, 63% HrSN).
Individuals with higher level diagnoses were the most likely to have ever repetitively touched or rubbed fabrics or clothing (96% vs 79-86% all other groups), rubbed their thighs or legs (88% vs 61% informally diagnosed, 50-51% undiagnosed and no level, 40% level 1), rubbed their scalp or face (76% vs 63% no level, 52-56% informally diagnosed and level 1, 32% undiagnosed), and hit their body (100% vs 71% informally diagnosed, 63-64% no level and level 1, 38% undiagnosed).
Individuals with informal diagnoses were the most likely to have ever repetitively touched or rubbed textured surfaces on stim toys (86% vs 77-80% level 1, higher level, and no level, 53% undiagnosed), touched something warm or hot (72-75% informal diagnosis and higher level vs 50% undiagnosed, 44% no level, 28% level 1), and petted or stroked another person (54% vs 40% higher level, 26-29% undiagnosed and no level, 8% level 1).
Tactile Current (Past Month)
There was a gradient of support needs regarding having repetitively touched or rubbed fabrics or clothing (51% LSN, 60% LMSN, 85% HrSN), touched something warm or hot (21% LSN, 36% LMSN, 43% HrSN), squeezed or applied pressure to part of their body (43% LSN, 62-67% LMSN and HrSN), hugged or squeezed a person, pillow, or pet (38% LSN, 55% LMSN, 76% HrSN), petted or stroked another person (13-17% LSN and LMSN, 35% HrSN), rubbed their thighs or legs (34-38% LSN and LMSN, 61% HrSN), rubbed their scalp or face (36% LSN and LMSN, 67% HrSN), hit their body (25% LSN, 40% LMSN, 59% HrSN), hit their face (13-14% LSN and LMSN, 46% HrSN), and head banged (9-11% LSN and LMSN, 30% HrSN) within the last month.
Individuals with higher level diagnoses were the most likely to have repetitively rubbed their thighs or legs (72% vs 54% informally diagnosed, 35-38% no level and level 1, 26% undiagnosed), hit their body (72% vs 49% no level, 39% informally diagnosed, 29% level 1, 12% undiagnosed), hit their face (44% vs 29% informally diagnosed, 23% no level, 17% level 1, 6% undiagnosed), and banged their head (32% vs 14-19% no level and informally diagnosed, 6-8% level 1 and undiagnosed) within the last month.
Individuals with informal diagnoses were the most likely to have ever repetitively touched or rubbed textured surfaces on stim toys (86% vs 77-80% level 1, higher level, and no level, 53% undiagnosed), touched something warm or hot (72-75% informal diagnosis and higher level vs 50% undiagnosed, 44% no level, 28% level 1), touched something cool or cold (48-50% informal diagnosis and higher level vs 21-24% all other groups), and petted or stroked another person (39% vs 21-24% undiagnosed and higher level, 16% no level, 4% level 1).
Proprioceptive Ever
There was a gradient of support needs regarding having ever repetitively flapped (71-76% LSN and LMSN, 93% HrSN), paced (69% LSN, 88-89% LMSN and HrSN), run (22% LSN, 45-50% LMSN and HrSN), rocked (76% LSN, 90-93% LMSN and HrSN), spun (48% LSN, 64% LMSN, 78% HrSN), and swung (41% LSN, 69% LMSN, 78% HrSN).
Additionally, individuals with HrSN were the least likely to have ever repetitively played with objects like a pen or string (89% vs 98% LSN and LMSN). Individuals with LMSN were the most likely to have ever repetitively shaken their leg (93% vs 74% LSN, 83% HrSN), danced (64% vs 26% LSN, 59% HrSN), and hung up-side-down (53% vs 30% LSN, 43% HrSN).
Individuals with higher level diagnoses were the most likely to have ever repetitively flapped (100% vs 92% level 1, 79-81% informally diagnosed and no level, 53% undiagnosed), paced (92% vs 84-88% level 1, informally diagnosed, and no level, 65% undiagnosed), jumped or bounced (92% vs 74% undiagnosed and no level, 64% informally diagnosed, 52% level 1), and spun (88% vs 72% no level, 61% informally diagnosed, 50% undiagnosed, 44% level 1).
Proprioceptive Current (Past Month)
There was a gradient of support needs regarding having repetitively flapped (55% LSN and LMSN, 78% HrSN), walked on tiptoes (28% LSN, 48% LMSN, 54% HrSN), paced (45% LSN, 66% LMSN, 72% HrSN), jumped or bounced (34% LSN, 47% LMSN, 59% HrSN), rocked (55% LSN, 66% LMSN, 80% HrSN), and spun (9% LSN, 26-30% LMSN and HrSN) within the last month.
Additionally, individuals with LMSN were the most likely to have repetitively danced (43% vs 15% LSN and 29% HrSN) within the last month.
Individuals with higher level diagnoses were the most likely to have repetitively walked on tiptoes (68% vs 38-43% informally diagnosed, level 1, and no level, 29% undiagnosed) and paced (80% vs 71% informally diagnosed, 60-63% level 1 and no level, 35% undiagnosed) within the last month.
Individuals with informal diagnoses were the most likely to have repetitively shook or turned their head (54-57% informally diagnosed and level 1 vs 48% higher level, 24-30% undiagnosed and no level) and swung (39% vs 25-28% level 1 and no level, 8% higher level, 0% undiagnosed) within the last month.
Frequency
Frequency of tactile and proprioceptive repetitive behaviors was comparable across self-reported support need groups.
There were significant differences by diagnosis. Of undiagnosed individuals, 0% had tactile/proprioceptive repetitive behaviors less than weekly, 18% weekly but less than daily, 32% less than half the day, and 50% more than half the day. Of informally diagnosed individuals, 0% had tactile/proprioceptive repetitive behaviors less than weekly, 7% weekly but less than daily, 50% less than half the day, and 39% more than half the day. Of individuals with no level specifier, 2% had tactile/proprioceptive repetitive behaviors less than weekly, 5% weekly but less than daily, 47% less than half the day, and 40% more than half the day. Of individuals with level 1 ASD, 0% had tactile/proprioceptive repetitive behaviors less than weekly, 0% weekly but less than daily, 56% less than half the day, and 44% more than half the day. Of individuals with higher level ASD, 0% had tactile/proprioceptive repetitive behaviors less than weekly, 0% weekly but less than daily, 24% less than half the day, and 68% more than half the day.
Oral or Olfactory Repetitive Behaviors
Oral Ever
There was a gradient of support needs regarding having ever repetitively chewed gum (52% LSN, 62% LMSN, 78% HrSN), eaten foods with textures they liked (50% LSN, 74-78% LMSN and HrSN), eaten non-food items like sand or paper (20% LSN, 33% LMSN, 43% HrSN), rubbed, tapped, or picked their lips (48% LSN, 67% LMSN, 76% HrSN), chewed or sucked their thumb, fingers, or hand (43-47% LSN and LMSN, 72% HrSN), chewed or sucked on stim toys (30% LSN, 43% LMSN, 61% HrSN), chewed or sucked on other objects (26% LSN, 41% LMSN, 57% HrSN), licked objects (11% LSN, 19% LMSN, 35% HrSN), bit their body other than their fingers or nails (41% LSN, 50% LMSN, 65% HrSN), and bit other people (9% LSN, 17% LMSN, 37% HrSN).
Additionally, individuals with LMSN were the most likely to have ever repetitively licked or sucked their lips (62% vs 39% LSN and 52% HrSN).
Individuals with higher level diagnoses were the most likely to have ever repetitively ground their teeth (76% vs 52-57% informally diagnosed, level 1, and undiagnosed, 40% no level) and bit other people (48% vs 18-19% undiagnosed, informally diagnosed, and no level, 4% level 1).
Individuals without an autism diagnosis were the most likely to have ever repetitively bit their fingers or nails (82% vs 76% higher level, 64-67% level 1 and no level, 46% informally diagnosed).
Oral Current (Past Month)
There was a gradient of support needs regarding having repetitively chewed or sucked on clothing (2% LSN, 16% LMSN, 24% HrSN), chewed or sucked their thumb, fingers, or hand (23-29% LSN and LMSN, 57% HrSN), chewed or sucked on stim toys (9-10% LSN and LMSN, 30% HrSN), chewed or sucked on other objects (6% LSN, 17% LMSN, 28% HrSN), and bit their body other than their fingers or nails (17% LSN, 26% LMSN, 41% HrSN) within the last month.
Additionally, individuals with LMSN were the most likely to have repetitively licked or sucked their lips (47% vs 23% LSN and 41% HrSN) within the last month.
Individuals with higher level diagnoses were the most likely to have repetitively chewed or sucked clothing (32% vs 14% no level and informally diagnosed, 8% level 1, 3% undiagnosed), chewed or sucked on their thumb, fingers, or hand (64% vs 29-36% no level, level 1, and informally diagnosed, 26% undiagnosed), chewed or sucked stim toys (36% vs 23% no level, 13% level 1, 7% informally diagnosed, 0% undiagnosed), and chewed or sucked other objects (36% vs 14-16% informally diagnosed and no level, 6-8% undiagnosed and level 1) within the last month.
Olfactory Ever
There was a gradient of support needs regarding having ever repetitively smelled essential oils (20% LSN, 31% LMSN, 43% HrSN), smelled animals (13% LSN, 34% LMSN, 41% HrSN), and smelled people (13% LSN, 24% LMSN, 35% HrSN).
Additionally, LMSN were the most likely to have ever repetitively smelled perfumes, lotions, or other body products (57% vs 31% LSN, 46% HrSN).
Individuals with higher level diagnoses were the most likely to have ever repetitively smelled objects that aren't usually smelled (54-56% higher level and informally diagnosed vs 30-32% no level and undiagnosed, 24% level 1) and smelled animals (48% vs 39% informally diagnosed, 28% no level, 18% undiagnosed, 12% level 1).
Individuals with informal diagnoses were the most likely to have ever repetitively smelled perfumes, lotions, or other body products (64% vs 56% higher level, 47% no level, 38% undiagnosed, 24% level 1).
48% of those with level 1 ASD had never had olfactory repetitive behaviors compared to 26-30% without a level or without a diagnosis and 14-16% with an informal or higher level diagnosis.
Olfactory Current (Past Month)
There was a gradient of support needs regarding having repetitively smelled essential oils (0% LSN, 14-17% LMSN and HrSN) and smelled people (8% LSN, 18% LMSN, 26% HrSN) within the last month.
Additionally, LMSN were the most likely to have repetitively smelled perfumes, lotions, or other body products (34% vs 10% LSN, 30% HrSN) within the last month.
55% of those with LSN hadn't had any olfactory repetitive behaviors within the last month compared to 34% with LMSN and 26% with HrSN.
Individuals with higher level diagnoses were the most likely to have repetitively smelled essential oil (22-24% higher level and informally diagnosed vs 0-6% all other groups) and smelled animals (48% vs 13-19% all other groups) within the last month.
Frequency
Frequency of oral and olfactory repetitive behaviors was comparable across groups.
Other Repetitive Behaviors
Ever
There was a gradient of support needs regarding having ever repetitively gamed (53% LSN, 76% LMSN, 83% HrSN), arranged things (58% LSN, 79-80% LMSN and HrSN), and read the same thing over and over (45% LSN, 64% LMSN, 70% HrSN).
Additionally, LMSN were the most likely to have ever repetitively drawn (90% vs 72-73% LSN and HrSN).
Individuals with level 1 ASD were the least likely to have ever repetitively gamed (44% vs 71-79% all other groups).
Individuals with informal diagnoses were the most likely to have ever repetitively arranged things (84-89% informally diagnosed and higher level vs 74% no level, 68% level 1, 56% undiagnosed).
Current (Past Month)
There was a gradient of support needs regarding having repetitively gamed (37% LSN, 50% LMSN, 78% HrSN) and arranged things (42% LSN, 59% LMSN, 67% HrSN) within the last month.
10% of those with LSN hadn't had any other repetitive behaviors within the last month compared to 0-2% with LMSN and HrSN.
Individuals with informal diagnoses were the most likely to have repetitively arranged things (71-75% informally diagnosed, level 1, and higher level, 41% undiagnosed and no level) within the last month.
Frequency
Those with LSN autism had less frequent other repetitive behaviors (12% less than weekly, 42% weekly but less than daily, 38% less than half the day, 6% more than half the day) followed by LMSN (10% less than weekly, 33% weekly but less than daily, 43% less than half the day, 9% more than half the day), with HrSN having the most frequent (7% less than weekly, 20% weekly but less than daily, 58% less than half the day, 20% more than half the day).
Frequency of other repetitive behaviors was comparable across diagnostic groups.
ADHD
Diagnosis
There were no significant differences in ADHD diagnosis, type, or age of diagnosis across self-reported support needs.
Individuals without an autism diagnosis had the highest rate of ADHD (50% formally diagnosed, 15% informally diagnosed, 12% suspected) followed by those with higher level ASD (56% formally diagnosed, 8% informally diagnosed, 4% suspected). Those informally diagnosed with autism had the lowest rates of formal ADHD diagnoses (25%) but the highest rates of informal diagnoses (29%) and suspected ADHD (14%). Individuals with no level or level 1 ASD were similar (no level: 33% formal, 5% informal, 12% suspected; level 1: 40% formal, 4% informal, 4% suspected).
The type of ADHD diagnosis and age of diagnosis were comparable across diagnostic groups.
Severity
There were no significant differences in ADHD severity across groups.
Interventions
There were no significant differences in medications or therapy for ADHD across self-reported support needs.
Individuals with an ASD diagnosis but no level specifier were the least likely to take medication for ADHD (14%), followed by those with an informal autism diagnosis (25%). Those with higher level ASD and level 1 ASD were similar (32-36%). Those with undiagnosed ASD took ADHD medication at the highest rate (47%). However, therapy for ADHD did not significantly differ across diagnostic groups.
Autism
Diagnosis
Individuals with LMSN were the least likely to be formally diagnosed (48%), followed by LSN (59%); HrSN were the most likely to be formally diagnosed (76%). LMSN were the most likely to be informally diagnosed (22%) followed by HrSN (20%) and finally LSN (11%). HrSN were the least likely to be undiagnosed (4% compared to 29-30% LSN and LMSN).
Of those with an autism diagnosis, there were significant differences across type of diagnosis by support needs. LSN individuals were all diagnosed without a level (49%) or with level 1 ASD (51%). Most LMSN individuals were diagnosed without a level (67%) or with level 1 ASD (17%), but 14% were diagnosed with level 2 ASD, and 3% had split level 1/2. Finally, 38% of individuals with HrSN were diagnosed without a level, 8% with level 1, 31% with level 2, 10% with level 3, 5% with split level 1/2, and 8% with split level 2/3.
There were no significant differences in age of diagnosis across self-reported support needs.
Of those with an informal ASD diagnosis, 89% were diagnosed by a therapist, and 11% had special education eligibility for autism. Many had been given a specific informal diagnosis: 21% a non-DSM-5 diagnosis, 29% ASD with no level, 11% level 1 ASD, and 4% split level 1/2 ASD.
Of those with a higher level ASD diagnosis, 64% had level 2 ASD, 16% level 3 ASD, 8% split level 1/2 ASD, and 12% split level 2/3 ASD.
Age of diagnosis was significantly different across diagnostic groups after excluding the undiagnosed group. Individuals with level 1 ASD were diagnosed the latest (0% before age 9, 4% before age 12, 44% between 13-16, 28% between 19-25, 24% after age 25), and individuals with no level were diagnosed the earliest (19% before age 6, 33% between ages 6-12, 33% between ages 13-18, 7% between ages 19-25, 9% over age 25). Individuals with higher level ASD were diagnosed relatively early (16% before age 6, 24% between ages 6-12, 24% between ages 13-18, 24% between ages 19-25, 12% over age 25). Those with an informal diagnosis were diagnosed relatively later (5% before age 6, 19% between ages 6-12, 29% between 13-16, 29% between 19-25, 19% after age 25).
Autism Support Needs
Across the diagnostic groups, those with level 1 ASD reported the lowest autism-specific support needs (72% LSN, 16% LMSN, 12% MSN). Those without a diagnosis were the next lowest (42% LSN, 52% LMSN, 6% MSN) followed by those with no level (33% LSN, 40% LMSN, 21% MSN, 5% MHSN, 2% HSN) and an informal diagnosis (21% LSN, 46% LMSN, 25% MSN, 7% MHSN). Those with higher level diagnoses had the highest autism-related support needs (24% LMSN, 44% MSN, 12% MHSN, 20% HSN).
Other Demographics
Other Conditions Affecting Repetitive Movement
Individuals with LSN were the least likely to have another condition affecting repetitive movement (70% vs 88-89% LMSN and HrSN), but no specific conditions differed.
Individuals with an informal autism diagnosis were the most likely to have an anxiety disorder (79%), followed by higher level ASD and undiagnosed (62-64%), no level (41%), and level 1 (36%). Individuals with higher level ASD were the most likely to have bipolar disorder (16% vs 0-5% all other groups) and catatonia (16% vs 7-8% level 1 and informal diagnosis, 0% undiagnosed and no level).
Those with level 1 ASD were the least likely to have another condition affecting repetitive movement (60% vs 83-84% higher level and no level, 88% undiagnosed, 93% informal diagnosis).
Medications Affecting Repetitive Movement
Individuals with HrSN were the most likely to be taking anti-psychotics (20% vs 6-7% LSN and LMSN).
Individuals with higher level diagnoses were the most likely to be taking anti-psychotics (32% vs 3-9% all other groups).
Overall Support Needs
Individuals with LSN autism reported the lowest overall support needs; 56% reported low support needs, 35% low-moderate, and 9% medium/moderate. Individuals with LMSN autism reported were in the middle; 0% reported low support needs, 60% low-moderate, 36% medium/moderate, 2% moderate-high, and 2% high. Individuals with HrSN autism had the highest overall support needs; 0% reported low support needs, 0% low-moderate, 56% medium/moderate, 29% moderate-high, and 16% high.
Across the diagnostic groups, those with level 1 ASD reported the lowest overall support needs (40% LSN, 36% LMSN, 24% MSN). Those without a diagnosis were the next lowest (29% LSN, 38% LMSN, 24% MSN, 6% MHSN, 3% HSN), followed by those with no level (21% LSN, 31% LMSN, 43% MSN, 2% MHSN, 2% HSN) and those with an informal diagnosis (4% LSN, 46% LMSN, 29% MSN, 14% MHSN, 7% HSN). Those with higher level diagnoses had the highest overall support needs (20% LMSN, 36% MSN, 28% MHSN, 16% HSN).
Age
There were no significant differences in age across groups.
Sex and Gender
Sex was comparable across groups. Individuals with LSN autism were the most likely to identify as women (41% vs 24-25% LMSN and HrSN). Individuals with HrSN autism were the most likely to identify as men (37% vs 26% LSN and 19% LMSN). Individuals with LMSN autism were the most likely to identify as nonbinary or other (49% vs 28% LSN and 35% HrSN). Gender was comparable across diagnostic groups.
Stimming, Fidgeting and Other Repetitive Behaviors in People with Autism or ADHD, by ADHD status
This post is comparing 161 responses from my survey on stimming, fidgeting, and other repetitive behaviors in autism and ADHD:
This is a survey to understand stimming, fidgeting, and other repetitive movements in autism and ADHD. This survey is just for fun, not rese
Of the respondents included here, 50 only have or suspect that they have autism, 10 only have or suspect that they have ADHD, and 95 have or suspect that they have both autism and ADHD. Additionally, of those with ADHD, 39 have primarily inattentive ADHD ("ADD"; ADHD-I), and 40 have primarily hyperactive-impulsive or combined type (ADHD-H/C). Finally, 25 considered their ADHD mild, 58 moderate, and 19 severe. Chi-square tests were considered significant at p<.05.
(Summary under a read more due to length)
Overall Stimming, Fidgeting, or Repetitive Behaviors
Frequency
When comparing stimming, fidgeting, or other repetitive behaviors in private, there was no significant difference between those with just autism and those with both autism and ADHD. However, respondents with just ADHD had less frequent repetitive behaviors than those with autism; 70% of those with just ADHD had repetitive movements less than a quarter of the day, compared to 15-18% of autistic groups. Conversely, only 20% of those with just ADHD had repetitive behaviors almost constantly compared to 42-54% of autistic groups.
Frequency of repetitive behaviors in private did not differ between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
There were no significant differences between groups for repetitive behaviors in public.
Changes Over Time
Changes in frequency and visibility of repetitive behaviors since childhood were comparable across all groups.
Reasons for Repetitive Behaviors
Those with just autism were less likely to use repetitive behaviors to be less bored (39% vs 60-70% ADHD groups) and more likely to say repetitive behaviors "just happen" (98% vs 79-80% ADHD groups). Conversely, those with just ADHD were less likely to use repetitive behaviors to regulate emotions (10% vs 79-82% autistic groups), block bad sensory input (20% vs 52-63% autistic groups), and regulate sensory overload (20% vs 62-67% autistic groups). Finally, those with both autism and ADHD were the most likely to say it's painful not to engage in repetitive behaviors (54% vs 40% with just ADHD and 33% with just autism).
There were no significant differences among individuals with ADHD who were primarily inattentive or primarily hyperactive/combined.
Among those with ADHD, those with self-reported severe ADHD were the most likely to use repetitive behaviors to feel happy (74% vs 28-39%).
Reasons for Increased Repetitive Behaviors
No individuals with just ADHD reported that their repetitive behaviors increased because of any intense emotion (vs 69-80% autistic groups). Individuals with just ADHD were also the least likely to say their repetitive behaviors increased because of happiness (40% vs 78-82% autistic groups), bad sensory input (10% vs 61-67% autistic groups), and being with people they were comfortable with (10% vs 55-63% autistic groups).
Individuals with just autism were the least likely to say their repetitive behaviors increased because of boredom (35% vs 65-70% ADHD groups).
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to report that their repetitive behaviors increased because of stress (90% vs 71%) and boredom (77% vs 55%). There was a gradient of severity for increasing repetitive behaviors because of the individual being with people they were comfortable unmasking with (40% mild, 66% moderate, 74% severe).
Sense of Control
Those with autism and ADHD did not differ in their perceived ability to control the frequency of their repetitive behaviors. However, they significantly differed in their ability to control the type of repetitive behavior they engaged in. Individuals with just ADHD had the highest ability to control their type of repetitive behavior (50% completely in control, 40% mostly in control, 10% not very in control) followed by those with both autism and ADHD (11% completely in control, 63% mostly in control, 26% not very in control), with those with just autism reporting the least control (8% completely in control, 38% mostly in control, 40% not very in control, 10% not at all in control).
There were no significant differences among individuals with ADHD who were primarily inattentive or primarily hyperactive/combined nor across self-reported ADHD severities.
Other People's Acceptance of Repetitive Behaviors
Individuals with just autism reported the most acceptance of their repetitive movements by strangers (10% very accepting, 26% somewhat accepting, 12% not at all accepting, 50% unsure). 0% of those with both autism and ADHD thought strangers were very accepting, 22% somewhat accepting, and 28% not at all accepting, and 48% didn't know. 11% of those with just ADHD thought strangers were very accepting and 11% somewhat accepting, and 78% didn't know. Given the high rates of uncertainty for this question, this might reflect differences in perception more than reality. No differences were significant for other categories.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to report that their friends are accepting of their repetitive behaviors (72% very, 13% somewhat, 5% not at all compared to 34% very, 34% somewhat, 0% not at all). The same pattern held for intimate partners or spouses, with those with ADHD-H/C all reporting their partner (if they had one) was very accepting (54%) and those with ADHD-I being more mixed (30% very accepting, 11% somewhat accepting, 3% not at all accepting).
There were no significant differences across self-reported ADHD severities.
Other People's Negative Reactions to Repetitive Behaviors
There were no significant differences across groups.
Other Consequences of Repetitive Behaviors
No individuals with just ADHD reported that their repetitive behaviors caused inconveniences at work or school (for example, knocked over or spilled things; vs 31-46% of autistic groups) or broke an object (vs 27-38% of autistic groups). Individuals with just ADHD were also less likely to hurt themself a little (50% vs 83-90% of autistic groups) because of repetitive behaviors.
50% of individuals with just ADHD had no non-social consequences for their repetitive behaviors compared to 4-8% of autistic groups.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to report that their repetitive behaviors caused them to be late to a meeting or appointment (23% vs 5%), be unable to stop moving long enough to fall asleep (58% vs 36%), and break an object (43% vs 21%). There was a gradient of severity for repetitive behaviors having caused the individual to break an object (32% mild, 26% moderate, 58% severe).
Visual Repetitive Behaviors
Ever
No individuals with just ADHD had ever repetitively looked at sensory lamps or special projectors compared to 42-47% of autistic groups. Individuals with just ADHD were also less likely to have repetitively looked at glowing objects or objects that change color (20% vs 56-68% autistic groups), watched spinning or rotating objects (10% vs 30% with just autism and 64% with both autism and ADHD), watched rain or running water (40% vs 74-78% autistic groups), shook, flapped, or twisted their hands, fingers, or objects near their eyes (10% vs 52-54% autistic groups), lined up objects (30% vs 52-65% autistic groups), blinked a lot (10% vs 46-57% autistic groups), and focused and unfocused their vision (30% vs 60-74% autistic groups).
40% of those with just ADHD had never had visual repetitive behaviors compared to 3-8% of autistic groups.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have ever repetitively turned lights on and off (43% vs 21%). There were gradients of severity for having ever repetitively looked at "busy", crowded, or patterned things (20% mild, 45% moderate, 58% severe), watched repetitive movement (28% mild, 53% moderate, 63% severe), looked at gifs (16% mild, 31% moderate, 53% severe), looked at specific colors (12% mild, 26% moderate, 47% severe), and crossed and uncrossed eyes (12% mild, 36% moderate, 47% severe).
Current (Past Month)
No individuals with just ADHD had repetitively focused and unfocused their vision (vs 40-42% autistic groups) within the last month. Individuals with just ADHD were also less likely to have repetitively watched rain or running water (10% vs 47-56% autistic groups).
50% of those with just ADHD had no visual repetitive behaviors within the last month compared to 6-8% of autistic groups.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have repetitively looked at glowing objects or objects that change color (48% vs 24%) and turned lights on and off (18% vs 3%) within the past month. There were gradients of severity for having repetitively turned lights on and off again (8% mild, 4% moderate, 21% severe), watched repetitive movement (4% mild, 42% moderate, 37% severe), and watched non-repeating movement (4% mild, 9% moderate, 26% severe) within the last month.
Frequency
Those with just ADHD had less frequent visual repetitive behaviors; 50% had these behaviors less than once a month and 80% less than weekly. In contrast, 56-57% of autistic groups had these behaviors at least once or twice a day.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Audio Repetitive Behaviors
Ever
No individuals with just ADHD had ever repetitively recited parts of plays or movies (vs 30-46% autistic groups). Individuals with just ADHD were also less likely to have ever repetitively listened to a song or part of a song on repeat (60% vs 88-91% autistic groups), made animal noises (20% vs 48-59% autistic groups), made other noises like popping sounds (30% vs 72-80% autistic groups), and hummed (30% vs 62-74% autistic groups).
Individuals with both autism and ADHD were most likely to have ever repetitively listened to music in general (91% vs 60-72%), talked to people (35% vs 10-14%), tapped their fingers or an object to a beat (89% vs 66% just autism and 70% just ADHD), drummed on something (78% vs 30-38%), snapped or clapped (63% vs 36% just autism and 10% just ADHD), and repeated a word or phrase (79% vs 40-54%).
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have ever repetitively talked to others (53% vs 13%). There was a gradient of severity for having ever repetitively talked to themself out loud (60% mild, 72% moderate, 79% severe). Additionally, those with self-reported moderate ADHD were the most likely to snap or clap (71% vs 40-47%).
Current (Past Month)
No individuals with just ADHD had repetitively made animal noises (vs 30-40% autistic groups) within the last month. Individuals with just ADHD were also less likely to have repetitively made other noises like popping sounds (20% vs 52-67% autistic groups).
Individuals with both autism and ADHD were most likely to have repetitively listened to music in general (80% vs 50-58%), drummed on something (53% vs 18-20%), snapped or clapped (39% vs 10-18%), and repeated a word or phrase (61% vs 20-28%).
Individuals with just autism were least likely to have repetitively sung (34% vs 50-61% of ADHD groups) and tapped their fingers or an object to a beat (42% vs 68-70% ADHD groups).
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have repetitively talked to others (33% vs 13%) within the last month. There were no significant differences across self-reported ADHD severities.
Frequency
Frequency of audio repetitive behaviors was comparable across groups.
Tactile or Proprioceptive Repetitive Behaviors
Tactile Ever
No individuals with just ADHD had ever repetitively hit themself in the face (vs 36-43% autistic groups) or banged their head (vs 42-45% autistic groups). Individuals with just ADHD were also the least likely to have ever repetitively pushed buttons or switches on stim toys (40% vs 64-78% autistic groups), touched or rubbed textured surfaces on stim toys (30% vs 72-76% autistic groups), touched or rubbed fabrics or clothing (40% vs 82-84% autistic groups), touched or rubbed other soft surfaces (20% vs 74-84% autistic groups), touched or rubbed hard surfaces (30% vs 68-78% autistic groups), touched something warm or hot (10% vs 52-58% autistic groups), hugged or squeezed a person, pillow, or pet (30 vs 76-83% autistic groups), petted or stoked an animal (20% vs 60-75% autistic groups), and hit their body (10% vs 62-72% autistic groups).
There were no significant differences between those with ADHD-I and ADHD-H/C. There was a gradient of severity for having ever repetitively petted or stroked a person (12% mild, 25% moderate, 37% severe).
Tactile Current (Past Month)
No individuals with just ADHD had repetitively touched something warm or hot (vs 30-38% autistic groups), touched something cool or cold (vs 20-38% autistic groups), petted or stoked an animal (vs 46-52% autistic groups), or hit themself in the body (vs 38-40% autistic groups) within the last month. Individuals with just ADHD were also the least likely to have repetitively touched or rubbed textured surfaces on stim toys (10% vs 34-47% autistic groups), touched or rubbed other soft surfaces (20% vs 47-62% autistic groups), and touched or rubbed hard surfaces (10% vs 44-53% autistic groups) within the last month.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Proprioceptive Ever
No individuals with just ADHD had ever repetitively wrung their hands or made washing movements with their hands (vs 54-64% autistic groups). Individuals with just ADHD were also the least likely to have ever repetitively shaken or turned their head (10% vs 52-56% autistic groups), flapped (10% vs 78-84% autistic groups), walked on tiptoes (30% vs 56-71% autistic groups), rocked (30% vs 81-92% autistic groups), spun (20% vs 62-64% autistic groups), and swung (20% vs 54-66% autistic groups).
Individuals with both autism and ADHD were the most likely to have ever repetitively tapped their fingers (91% vs 70-72%), made other complex movements of the hands or fingers (75% vs 58% just autism and 40% just ADHD), danced (60% vs 20-30%), and jumped or bounced (80% vs 58% just autism and 40% just ADHD).
Individuals with just autism were the least likely to have ever repetitively shaken their leg (74% vs 89-100% ADHD groups).
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have ever repetitively opened and closed doors or drawers (50% vs 23%). There were gradients of severity for having ever repetitively bent or twisted fingers (52% mild, 78% moderate, 100% severe), wrung hands or made washing motions with the hands (32% mild, 66% moderate, 68% severe), and made other complex motions of the hand or fingers (48% mild, 71% moderate, 100% severe).
Proprioceptive Current (Past Month)
No individuals with just ADHD had repetitively wrung their hands or made washing movements with their hands (vs 42-51% autistic groups), shaken or turned their head (vs 38-43% autistic groups), or rocked (vs 62-64% autistic groups) within the last month. Individuals with just ADHD were also the least likely to have repetitively flapped (10% vs 62-66% autistic groups) and jumped or bounced (10% vs 42-50% autistic groups).
Individuals with both autism and ADHD were the most likely to have repetitively danced (36% vs 10-14%) and walked on tiptoes (52% vs 20-24%) within the last month.
Individuals with just autism were the least likely to have repetitively shaken their leg (58% vs 77% autism and ADHD and 100% just ADHD) within the last month.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have repetitively bent and twisted their fingers (78% vs 58%) within the last month. There were gradients of severity for having repetitively bent or twisted fingers (40% mild, 67% moderate, 84% severe), wrung hands or made washing motions with the hands (16% mild, 58% moderate, 58% severe), and made other complex motions of the hand or fingers (36% mild, 61% moderate, 89% severe) within the last month.
Frequency
Frequency of tactile and proprioceptive repetitive behaviors was comparable across groups.
Oral or Olfactory Repetitive Behaviors
Oral Ever
No individuals with just ADHD had ever repetitively drunken liquid with textures they liked (vs 24% just autism and 54% autism and ADHD) or chewed or sucked their thumb, other fingers, or hand (vs 42-58% autistic groups). Individuals with just ADHD were also the least likely to have ever repetitively chewed gum (20% vs 56-68% autistic groups), eaten food with textures they liked (30% vs 56-73% autistic groups), ground their teeth (20% vs 44-59% autistic groups), and bit their fingers or nails (30% vs 64-71%).
Individuals with both autism and ADHD were the most likely to have ever repetitively sucked hard candies (65% vs 30-42%).
20% of those with just ADHD had never had oral repetitive behaviors compared to 0-2% of autistic groups.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Oral Current (Past Month)
No individuals with just ADHD had repetitively drunken liquid with textures they liked (vs 16% just autism and 36% autism and ADHD) within the last month. Individuals with just ADHD were also the least likely to have repetitively eaten food with textures they liked (10% vs 42-60% autistic groups).
Individuals with both autism and ADHD were the most likely to have repetitively sucked hard candies (65% vs 30-42%) and ground their teeth (33% vs 10-16%) within the last month.
20% of those with just ADHD did not have oral repetitive behaviors within the last month compared to 2-3% of autistic groups.
There were no significant differences between those with ADHD-I and ADHD-H/C. There was a gradient of severity for having repetitively chewed on their cheeks, tongue, or lips (32% mild, 68% moderate, 68% severe) within the last month.
Olfactory Ever
No individuals with just ADHD had ever repetitively smelled objects that aren't usually smelled (vs 38-40% autistic groups) or sought out strong smells like gasoline (vs 28-39% autistic groups). Individuals with just ADHD were also the least likely to have ever repetitively smelled food and drinks (10% vs 26-43% autistic groups), smelled scented candles (10% vs 38-57% autistic groups), and smelled perfumes, lotions, or other body products (10% vs 40-52% autistic groups).
80% of those with just ADHD had never had olfactory repetitive behaviors compared to 21-34% of autistic groups.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Olfactory Current (Past Month)
Individuals with both autism and ADHD were the most likely to have smelled foods or drinks (34% vs 10-13%) within the last month.
80% of those with just ADHD did not have olfactory repetitive behaviors within the last month compared to 35-44% of autistic groups.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Frequency
Those with just ADHD had less frequent oral and olfactory repetitive behaviors; 50% had these behaviors less than weekly and 70% less than daily. In contrast, 63-67% of autistic groups had these behaviors at least once or twice a day.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Other Repetitive Behaviors
Ever
Individuals with just ADHD were the least likely to have ever repetitively done art other than drawing (10% vs 47-56% autistic groups), built with blocks or Legos (20% vs 57-60% autistic groups), and read the same thing over and over (20% vs 52-63% autistic groups).
Individuals with both autism and ADHD were the most likely to have ever repetitively drawn (84% vs 50-65%) and gamed (78% vs 50-51%).
20% of those with just ADHD had never had other repetitive behaviors compared to 0-4% of autistic groups.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have ever repetitively arranged things (88% vs 64%) and read the same thing over and over (75% vs 49%). Those with self-reported mild ADHD were the least likely to have ever repetitively drawn (32% vs 53-60%) and done yarn crafts (32% vs 58-64%).
Current (Past Month)
Individuals with just ADHD were the least likely to have repetitively drawn (10% vs 43-56% autistic groups) and arranged things (10% vs 53-56% autistic groups) within the last month.
Individuals with both autism and ADHD were the most likely to have repetitively gamed (61% vs 30-39%) within the last month.
30% of those with just ADHD did not have other repetitive behaviors within the last month compared to 2-8% of autistic groups.
Among those with ADHD, those with the hyperactive or combined types were more likely than those with ADHD-I to have repetitively read the same thing over and over (58% vs 34%) within the last month. There were no significant differences across self-reported ADHD severities.
Frequency
Those with just ADHD had less frequent other repetitive behaviors; 50% had these behaviors less than weekly and 70% less than daily. In contrast, 54-57% of autistic groups had these behaviors at least once or twice a day.
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
ADHD
Diagnosis
There were no significant differences in diagnosis between those with just ADHD and those with both autism and ADHD. The type of ADHD was comparable across groups, as was age of diagnosis among those who were diagnosed.
Those with ADHD-H/C were more likely to be formally diagnosed (73%), more likely to be informally diagnosed (25%), and less likely to be self-diagnosed or suspecting (3%) than those with ADHD-I (62% formally diagnosed, 15% informally diagnosed, 23% self/suspecting). Those with ADHD-H/C who were diagnosed were diagnosed on average younger (38% before age 12, 18% between 13-18, 33% between 19-25, 8% after 25) compared to those with ADHD-I (8% before age 12, 28% between 13-18, 20% between 19-25, 20% after 25).
There were no significant differences across self-reported ADHD severities.
Severity
ADHD severity was comparable between those with just ADHD and those with both autism and ADHD. There were no significant differences between those with ADHD-I and ADHD-H/C.
Interventions
Use of ADHD medications did not differ between those with just ADHD and those with both autism and ADHD. There were no significant differences between those with ADHD-I and ADHD-H/C. Those with self-reported mild ADHD were less likely to take medication for ADHD (29%) than those with self-reported moderate (53%) and severe (62%) ADHD.
No individuals with only ADHD had had therapy for impulsivity or hyperactivity compared to 19% with both autism and ADHD. Those with ADHD-H/C were more likely to have received therapy for hyperactivity or impulsivity (28% vs 10%). There were no significant differences across self-reported ADHD severities.
Autism
Diagnosis
Individuals with only autism were more likely to be formally diagnosed (73%) and less likely to be informally diagnosed (16%) or self-diagnosed or suspecting (10%) compared to those with both autism and ADHD (53% formally diagnosed, 20% informally diagnosed, 27% self-diagnosed or suspecting).
Of those with an autism diagnosis, the specific diagnosis was comparable across groups. Those with only autism were diagnosed younger on average (14% before age 5, 10% between 6-12, 38% between 13-18, 8% between 19-25, and 14% over 25) compared to those with both autism and ADHD (6% before age 5, 18% between 6-12, 16% between 13-18, 13% between 19-25, 10% over 25).
There were no significant differences between those with ADHD-I and ADHD-H/C in the prevalence of autism, formality of diagnosis, or specific diagnosis. Those with ADHD-H/C who were diagnosed with ASD were diagnosed on average younger (30% before age 12, 5% between 13-18, 28% between 19-25, 3% after 25) compared to those with ADHD-I (8% before age 12, 21% between 13-18, 18% between 19-25, 21% after 25).
There were no significant differences across self-reported
ADHD severity in the prevalence of autism, formality of diagnosis, specific diagnosis, or age of diagnosis.
Autism Support Needs
Autism-related support needs were comparable between those with just autism and those with both autism and ADHD. There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Other Demographics
Other Conditions Affecting Repetitive Movement
Individuals with only ADHD were the least likely to have another condition affecting repetitive movement (56% vs 71-87% autistic groups), but no specific conditions differed. There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Medications Affecting Repetitive Movement
Medications potentially affecting repetitive movements were comparable across groups.
Overall Support Needs
Individuals with only ADHD reported the lowest support needs; 78% reported low support needs, 11% low-moderate, and 11% medium/moderate. Autistic groups were comparable (18% low, 34-37% low-moderate, 29-36% medium/moderate, 7-10% moderate-high, 5-6% high).
There were no significant differences between those with ADHD-I and ADHD-H/C nor across self-reported ADHD severities.
Age
Individuals with only ADHD were the oldest (none under 18, 50% between 19-25, 20% between 26-30, 30% over 30). Autistic groups were comparable (22-28% under 18, 34-43% between 19-25, 14-22% between 26-30, 13-24% over 30).
There were no significant differences between those with ADHD-I and ADHD-H/C.
Those with self-reported moderate ADHD were the youngest (28% under 18, 40% between 19-25, 26% between 26-30, 5% over 30), and those with self-reported severe ADHD were the oldest (11% under 18, 42% between 19-25, 11% between 26-30, 37% over 30). Those with self-reported mild ADHD were in the middle (8% under 18, 48% between 19-25, 24% between 26-30, 20% over 30).
Sex and Gender
Sex and gender were comparable across groups.
Race/Ethnicity
Race/ethnicity was comparable across groups.
Referral Source
Referral sources were comparable across autism and ADHD groups. Among those with ADHD, those with ADHD-I were more likely to find the survey through Reddit (44% vs 23%) and less likely to find the survey through Tumblr (46% vs 68%). There were no significant differences across self-reported ADHD severities.
I posted a survey a months ago about how people with autism define autism-related support needs.
This is a preliminary summary of the first 62 useable responses. (1 respondent skipped straight to demographics, so I had to discard that for analysis.) If I get enough responses, I would like to compare groups based on: self-reported autism-related support needs label; self-reported overall support needs label; autism diagnosis; and how they define autism-related support needs.
The survey can be found here:
This is a survey to understand how people with autism define autism-related support needs, and if this differs between people depending on t
(Under a read more due to length)
Low Support Needs (LSN) Autism
Necessary Traits
The majority of respondents thought that in order for someone to claim to have LSN autism, the individual must be able to perform all activities of daily living independently (i.e., eating, bathing, dressing, getting around the home, and toileting) (60%), be diagnosed with autism (53%), and be able to perform most but not all instrumental activities of daily living independently (e.g., cooking, cleaning the home, driving, managing money, and shopping) (50%).
Many thought that individuals with LSN autism must need no help, need only accommodations, or need help only once or twice a week (47%), have level 1 autism or mild autism (or would have these specifiers if their diagnostician used them) (42%), be able to live with a partner or roommates without help from support staff (42%), have average to low-average adaptive functioning (average or somewhat low ability to do things most other people their age can do) (42%), be always or almost always verbal (unless they're non-speaking for another reason, like being Deaf) (37%), be able to hold a paid job with no or only small accommodations (37%), be able to live alone (33%), have no intellectual disability or only mild intellectual disability (31%), be able to attend and graduate college with no or only small accommodations (27%), have or would have had atypical autism, pervasive developmental disorder not otherwise specified (PDDNOS), Asperger's syndrome, or high functioning autism (26%), and have been told they're high functioning, have low support needs, or are very independent (26%).
Relatively few respondents thought that individuals with LSN autism must have meltdowns that are rare, mild, or over quickly (24%), cannot have language impairment (19%), need only mental health therapy or medication (19%), must be able to mask well (16%), must be able to perform all instrumental activities of daily living independently (13%), do not have severe mental health comorbidities (13%), do not have severe medical complexities (13%), do not need sensory tools in public (8%), were in mainstream, gifted, or advanced placement classes (8%), or cannot have obvious or disruptive stimming in public (6%). Very few respondents thought that individuals with LSN autism must have gone undiagnosed until adulthood (2%).
Only 2% responded that they don't believe the label "low support needs autism" is helpful. 15% indicated that they think this changes too often to say; however, only 5% gave that response without also selecting traits.
Others wrote in that individuals with LSN autism must be able to perform all activities of daily living independently or with prompting, or that they have comparatively lower levels of issues due to autistic traits. One wrote in that they think support needs labels change on a day-to-day basis, and one wrote in that they had trouble answering the question because there are many things that would make someone LSN but aren't true of all individuals with LSN.
Typical Traits
The majority of respondents thought that most people with LSN autism have been told they're high functioning, have low support needs, or are very independent (87%), have level 1 autism or mild autism (or would have these specifiers if their diagnostician used them) (85%), are able to perform all activities of daily living independently (i.e., eating, bathing, dressing, getting around the home, and toileting) (84%), are able to live with a partner or roommates without help from support staff (76%), are always or almost always verbal (unless they're non-speaking for another reason, like being Deaf) (74%), have no intellectual disability or only mild intellectual disability (73%), are able to live alone (71%), need no help, need only accommodations, or need help only once or twice a week (69%), are able to perform most instrumental activities of daily living independently (e.g., cooking, cleaning the home, driving, managing money, and shopping) (69%), have meltdowns that are rare, mild, or over quickly (66%), have or would have had atypical autism, pervasive developmental disorder not otherwise specified (PDDNOS), Asperger's syndrome, or high functioning autism (61%), have average to low-average adaptive functioning (average or somewhat low ability to do things most other people their age can do) (61%), are able to mask well (61%), are diagnosed with autism (60%), are able to hold a paid job with no or only small accommodations (60%), were in mainstream, gifted, or advanced placement classes (58%), do not have language impairment (53%), are able to attend and graduate college with no or only small accommodations (52%), are able to perform all instrumental activities of daily living independently (52%), do not have obvious or disruptive stimming in public (50%), and need only mental health therapy or medication (50%).
Many thought that individuals with LSN autism usually go undiagnosed until adulthood (37%).
Relatively few thought that individuals with LSN autism usually do not need sensory tools in public (23%), do not have severe medical complexities (23%), and do not have severe mental health comorbidities (21%).
Only 2% responded that they don't believe the label "low support needs autism" is helpful. 6% indicated that they think this changes too often to say; however, only 2% gave that response without also selecting traits.
One respondent wrote in that individuals with LSN autism are usually able to perform all activities of daily living independently or with prompting.
Overall Best Definition
When forced to choose one definition, the most frequently chosen was that individuals with LSN autism need no support, only accommodations, or support once or twice a week (37%). The next most frequently chosen definition was that individuals with LSN autism are able to perform all activities of daily living independently (21%). These were followed by level 1 autism (19%) and being able to live alone without support (11%). High masking autism was rarely chosen (2%). 6% didn't know how to answer, and 3% responded that they don't think "low support needs autism" is a helpful label.
Discordant Labels
When asked what it means if someone has LSN autism but medium/moderate support needs (MSN) or high support needs (HSN) overall, most respondents answered that this could indicate that someone could be able to live alone if they only had autism, but they can't because of other disabilities (76%); could be able to perform all activities of daily living if they only had autism, but they can't because of other disabilities (76%); and has level 1 autism but severe mental health or medical challenges (66%).
Other respondents indicated that it could mean someone was diagnosed with level 1 autism because of their social-communication but has more severe challenges with restricted/repetitive behaviors (45%); can mask but has severe mental health or medical challenges (42%); was diagnosed with level 1 autism because of their restricted/repetitive behaviors but has more severe social-communication challenges (40%); or is low support needs compared to other people with autism, which is MSN compared to all disabled people their age (34%).
Relatively few indicated that this could mean someone was diagnosed with level 1 autism but identifies more as having MSN (18%).
2% responded that everyone with LSN autism has overall low support needs. 6% didn't know. 2% responded that "low support needs autism" isn't a helpful label. One respondent wrote in that they think support needs change day-to-day.
Exposure to Claims About LSN Autism
Most respondents had heard or seen people claim that "low support needs aren't no support needs" (87%), "low support needs means you don't need support" (77%), "you must be low support needs if [trait]" (for example, if you were late diagnosed) (76%), "no one with low support needs struggles with [symptom]" (for example, frequent meltdowns) (73%), "low support needs is the same as high masking" (71%), "everyone with low support needs should be able to do [task]" (for example, shower regularly) (69%), and "low support needs autism isn't really autism" (53%).
Relatively few respondents had heard or seen the claim "no one with autism has low support needs" (15%).
2% of respondents hadn't heard or seen any of these claims. Others wrote in that they've heard or seen people claim that "LSN is if autistic people were neurotypical", "LSN is the new high-functioning label", "LSNs often erase/ignore [people with higher support needs]", "Low support autism should be a different diagnosis", and "LSN people are just seen as quirky, not disabled!" Others seem to have wrote in things that they themselves were told, specifically "Since you are low support needs, you do not need [accommodation]", "Since you are low support needs you should be masking [trait I am capable of masking at a severe detriment to my mental health]", "I didn't even notice you had autism!", and "So, you basically don't have autism?"
Willingness to Disclose LSN Autism
5% of respondents were less willing to tell others that they have LSN autism because of how people talk about LSN autism. 10% were unsure because they didn't know if their autism is LSN, but they don't like the label because of how other people talk about it. 16% were unsure if how people talk about LSN autism influences their disclosure.
9% of respondents had LSN autism but didn't mind disclosing it. 17% didn't disclose for another reason, such as thinking it's no one else's business. 43% said this question isn't applicable to them because their autism isn't LSN.
Medium/Moderate Support Needs (MSN) Autism
Necessary Traits
The majority of respondents thought that in order for someone to claim to have MSN autism, the individual must be unable to live alone without support (68%), be able to perform some or no instrumental activities of daily living independently (e.g., cooking, cleaning the home, driving, managing money, and shopping) (68%), be diagnosed with autism (56%), and be able to perform some but not all activities of daily living independently (i.e., eating, bathing, dressing, getting around the home, and toileting) (50%).
Many thought that individuals with MSN autism must need help for at least a few hours every day (39%), have level 2 autism or moderate autism (or would have these specifiers if their diagnostician used them) (37%), have been told they're moderate functioning, have medium support needs, or are somewhat independent (37%), need intensive accommodations in order to hold a job (35%), have low adaptive functioning (low ability to do things most other people their age can do) (34%), need help from support staff to live with a partner or roommates (31%), need intervention beyond mental health treatment (for example, occupational or speech therapy) (29%), and need intensive accommodations in order to graduate college (27%).
Relatively few respondents thought that individuals with MSN autism must be unable to mask well (24%), have some obvious or disruptive stimming even in public (24%), have frequent meltdowns or shutdowns (24%), need sensory tools in public (21%), need help almost every day but not daily (19%), be verbal most of the time (unless they're non-speaking for another reason, like being Deaf) (19%), have mild to moderate language impairment (16%), have mild to moderate intellectual disability (13%), have or would have had atypical autism, pervasive developmental disorder not otherwise specified (PDDNOS), high functioning autism, or autistic disorder (13%), have moderate to severe mental health comorbidities (10%), have been diagnosed as a child (8%), be unable to live alone at all (6%), or be unable hold any job or only able to do work meant for people with severe disabilities (5%).
Very few respondents thought that individuals with MSN autism must have moderate to severe medical complexities (3%), need to live with caregivers or in supported living (3%), or have been in special education (3%). None thought that individuals with MSN autism must not have been able to attend college (0%).
Only 2% responded that they don't believe the label "medium/moderate support needs autism" is helpful. 13% indicated that they think this changes too often to say; however, only 5% gave that response without also selecting traits.
Others wrote in to say that they think support needs change day-to-day or to ask if needs can change in different situations.
Typical Traits
The majority of respondents thought that most people with MSN autism are able to perform some or no instrumental activities of daily living independently (e.g., cooking, cleaning the home, driving, managing money, and shopping) (87%), are unable to live alone without support (82%), are able to perform some but not all activities of daily living independently (i.e., eating, bathing, dressing, getting around the home, and toileting) (81%), are diagnosed with autism (79%), need sensory tools in public (77%), need intervention beyond mental health treatment (for example, occupational or speech therapy) (73%), need intensive accommodations in order to hold a job (71%), have level 2 autism or moderate autism (or would have these specifiers if their diagnostician used them) (69%), need intensive accommodations in order to graduate college (69%), have been told they're moderate functioning, have medium support needs, or are somewhat independent (68%), need help almost every day (68%), can't mask well (68%), have some obvious or disruptive stimming even in public (65%), have low adaptive functioning (low ability to do things most other people their age can do) (61%), need help for at least a few hours every day (60%), need help from support staff to live with a partner or roommates (55%), have frequent meltdowns or shutdowns (55%), and were diagnosed as children (53%).
Many thought that individuals with MSN autism usually have mild to moderate language impairment (47%), were in special education (47%), have moderate to severe mental health comorbidities (44%), need to live with caregivers or in supported living (44%), are verbal most of the time (unless they're non-speaking for another reason, like being Deaf) (40%), cannot hold any job or can only do work meant for people with severe disabilities (35%), have mild to moderate intellectual disability (32%), cannot live alone at all (31%), cannot attend college (27%), have or would have had atypical autism, pervasive developmental disorder not otherwise specified (PDDNOS), high functioning autism, or autistic disorder (27%), and have moderate to severe medical complexities (26%).
Only 2% responded that they don't believe the label "medium/moderate support needs autism" is helpful. 10% indicated that they think this changes too often to say; however, only 2% gave that response without also selecting traits.
One respondent wrote in that they think individuals with MSN autism usually can't work full time.
Overall Best Definition
When forced to choose one definition, the most frequently chosen was that individuals with MSN autism are able to perform some but not all activities of daily living independently (37%). The next most frequently chosen definition was that individuals with MSN autism have level 2 autism (23%). These were followed by being unable live alone without support (21%) and needing daily support (15%). Unmasked autism wasn't chosen by any respondents (0%). 3% didn't know how to answer, and 2% responded that they don't think "medium/moderate support needs autism" is a helpful label.
Discordant Labels: Lower
When asked what it means if someone has MSN autism but low support needs (LSN) overall, many respondents answered that this could indicate that someone was diagnosed with level 2 autism because of their social-communication needs but has relatively low challenges with restricted/repetitive behaviors (35%); has level 2 or moderate autism but can still live alone (35%); has level 2 or moderate autism but gets enough support to seem LSN (32%); was diagnosed with level 2 autism but identifies more as LSN (29%); was diagnosed with level 2 autism because of their restricted/repetitive behaviors but has relatively lower social-communication challenges (29%); cannot mask well but can perform all activities of daily living independently (27%); and has medium/moderate support needs compared to other people with autism, which is LSN compared to all disabled people their age (27%).
Relatively few respondents answered that this could indicate someone can't mask well but can live alone (19%) or has level 2 or moderate autism but can mask well (10%).
11% responded that everyone with MSN autism has overall medium/moderate support needs. 37% responded that everyone with MSN autism has overall medium/moderate support needs or high support needs, including 27% who only selected that option.
10% didn't know. 3% responded that "medium/moderate support needs autism" isn't a helpful label. One respondent wrote in that they think support needs change day-to-day. Another respondent wrote in that someone could appear LSN if their environment is managed exactly right, but they're still MSN if anything goes wrong. Finally, a respondent wrote that someone could be diagnosed with level 2 autism but be LSN because their needs changed over time.
Discordant Labels: Higher
When asked what it means if someone has MSN autism but high support needs (HSN) overall, many respondents answered that this could indicate that someone could perform some activities of daily living if they only had autism, but they can't because of other disabilities (79%); has level 2 autism but severe mental health or medical challenges (71%); or could be able to live with a partner with help from support staff they only had autism, but they have to live in a group home because of other disabilities (63%).
Other respondents indicated that it could mean someone was diagnosed with level 2 autism because of their social-communication but has more severe challenges with restricted/repetitive behaviors (47%); was diagnosed with level 2 autism because of their restricted/repetitive behaviors but has more severe social-communication challenges (39%); or has medium/moderate support needs compared to other people with autism, which is HSN compared to all disabled people their age (31%).
Relatively few indicated that this could mean someone was diagnosed with level 2 autism but identifies more as having HSN (24%).
3% responded that everyone with MSN autism has overall medium/moderate support needs. 8% didn't know. 3% responded that "medium/moderate support needs autism" isn't a helpful label.
Exposure to Claims About MSN Autism
Most respondents had heard or seen people claim that "medium/moderate support needs is too much of a grey area; it's hard to understand where it begins and ends" (83%), "medium/moderate support needs autism isn't talked about enough" (82%), and "you can't be medium/moderate support needs if [trait]" (for example, if you were late diagnosed) (76%).
Many respondents had heard or seen people claim that "if you need support at all, you're medium/moderate support needs" (48%) and "no one with medium/moderate support needs struggles with [symptom]" (for example, hurting other people during meltdowns) (42%).
Relatively few respondents had heard or seen the claim "medium/moderate support needs autism isn't really autism" (8%).
3% of respondents hadn't heard or seen any of these claims. Others wrote in that they've heard or seen people claim that "needing reminders for activities of daily living makes you MSN"; "some people with LSN autism want to call themselves MSN instead"; and "MSN autism should be removed; there should only be low or high".
Willingness to Disclose MSN Autism
12% of respondents were less willing to tell others that they have MSN autism because of how people talk about MSN autism. 15% were unsure because they didn't know if their autism is MSN, but they don't like the label because of how other people talk about it. 8% were unsure if how people talk about MSN autism influences their disclosure.
10% of respondents had MSN autism but didn't mind disclosing it. 7% didn't disclose for another reason, such as thinking it's no one else's business. 48% said this question isn't applicable to them because their autism isn't MSN.
High Support Needs (HSN) Autism
Necessary Traits
The majority of respondents thought that in order for someone to claim to have HSN autism, the individual must be diagnosed with autism (62%), need help for at least 6-8 hours every day (62%), need intensive intervention to stay safe, communicate with others, or learn skills (62%), have very low adaptive functioning (very low ability to do things most other people their age can do) (57%), be unable to perform any instrumental activities of daily living independently (e.g., cooking, cleaning the home, driving, managing money, and shopping) (54%), and need to live with caregivers or in a group home (51%).
Many thought that individuals with HSN autism must have level 3 autism or severe autism (or would have these specifiers if their diagnostician used them) (48%), have language impairment of any severity (48%), have been told they're low functioning, have high support needs, or are very dependent on others (41%), be unable to hold any job or only able to do work meant for people with severe disabilities (41%), have very obvious or disruptive stimming even in public (39%), have or would have had autistic disorder or classic autism (36%), only be able to communicate about intense interests or basic needs, or need a lot of time and support to communicate (33%), and need multiple obvious sensory tools in public (28%).
Relatively few respondents thought that individuals with HSN autism must have severe behavioral challenges, like self-harm or elopement (23%), need 24/7 care or supervision (21%), be unable to mask at all (21%), be able to perform some activities of daily living independently (i.e., eating, bathing, dressing, getting around the home, and toileting) (21%), be unable to perform any activities of daily living independently (21%), have severe language impairment (16%), have intellectual disability of any severity (16%), have been diagnosed as a child (15%), be completely nonverbal or minimally verbal (15%), have profound autism (13%), have been in contained special education or a special school (13%), have severe mental health comorbidities (8%), have severe to profound intellectual disability (7%), be unable to attend college (7%), or have severe medical complexities (5%).
None thought that individuals with HSN autism must have been diagnosed as a toddler (0%).
Only 2% responded that they don't believe the label "high support needs autism" is helpful. 11% indicated that they think this changes too often to say; however, only 5% gave that response without also selecting traits.
One respondent wrote in to say that they think support needs change day-to-day.
Typical Traits
The majority of respondents thought that most people with HSN autism are diagnosed with autism (92%), cannot perform any instrumental activities of daily living independently (e.g., cooking, cleaning the home, driving, managing money, and shopping) (87%), have been told they're low functioning, have high support needs, or are very dependent on others (84%), have very low adaptive functioning (very low ability to do things most other people their age can do) (84%), have level 3 autism or severe autism (or would have these specifiers if their diagnostician used them) (82%), need intensive intervention to stay safe, communicate with others, or learn skills (82%), were diagnosed as a child (75%), need to live with caregivers or in a group home (75%), need help for at least 6-8 hours every day (75%), have language impairment of any severity (72%), cannot hold any job or can only do work meant for people with severe disabilities (72%), have very obvious or disruptive stimming even in public (72%), need multiple obvious sensory tools in public (72%), have been in contained special education or a special school (70%), have or would have had autistic disorder or classic autism (67%), can only communicate about intense interests or basic needs, or need a lot of time and support to communicate (67%), have intellectual disability of any severity (66%), are completely nonverbal or minimally verbal (64%), are unable to mask at all (62%), have severe behavioral challenges, like self-harm or elopement (62%), cannot attend college (54%), cannot perform any activities of daily living independently (i.e., eating, bathing, dressing, getting around the home, and toileting) (54%), can perform some activities of daily living independently (51%), and need 24/7 care or supervision (51%).
Many thought that individuals with HSN autism usually were diagnosed as a toddler (49%), have severe language impairment (41%), have severe mental health comorbidities (39%), have severe medical complexities (39%), have profound autism (39%), and have severe to profound intellectual disability (21%).
Only 2% responded that they don't believe the label "high support needs autism" is helpful. 11% indicated that they think this changes too often to say; however, only 2% gave that response without also selecting traits.
One respondent wrote in that they don't know enough individuals with HSN autism to know what's typical for this population.
Overall Best Definition
When forced to choose one definition, the most frequently chosen was that individuals with HSN autism need almost constant support or supervision (34%). The next most frequently chosen definition was that individuals with HSN autism have level 3 autism or severe autism (30%). These were followed by being unable to perform any activities of daily living independently (21%) and needing to live with a caregiver or in a group home (8%). 2% responded that HSN autism is very obvious, completely unmasked autism. Profound autism wasn't chosen by any respondents (0%). 3% didn't know how to answer, and 2% responded that they don't think "high support needs autism" is a helpful label.
Discordant Labels
When asked what it means if someone has HSN autism but low support needs (LSN) or medium/moderate support needs (MSN) overall, many respondents answered that this could indicate that someone has level 3 or severe autism but can still live alone or with a partner with help from support staff (38%); was diagnosed with level 3 autism because of their social-communication needs but has relatively low challenges with restricted/repetitive behaviors (35%); was diagnosed with level 3 autism because of their restricted/repetitive behaviors but has relatively lower social-communication challenges (35%); has level 3 or severe autism but gets enough support to seem LSN or MSN (33%); was diagnosed with level 3 autism but identifies more as MSN (30%); or has high support needs compared to other people with autism, which is MSN compared to all disabled people their age (28%).
Relatively few respondents answered that this could indicate someone has level 3 or severe autism but can mask well (8%).
42% responded that everyone with HSN autism has overall high support needs, including 30% who only selected that option.
8% didn't know. 3% responded that "high support needs autism" isn't a helpful label. One respondent wrote in that someone could be HSN but function like someone with MSN in some environments.
Exposure to Claims About HSN Autism
Most respondents had heard or seen people claim that "No one with high support needs can do [task]" (for example, use the internet) (89%); "you can't be high support needs if [trait]" (for example, if you were late diagnosed) (89%); "high support needs autism only looks like my child/niece/neighbor's kid" (79%); "no one with high support needs autism can self-advocate" (75%); "parents/professionals need to be allowed in autism communities to support or advocate for people with high support needs" (70%); "people with high support needs autism were coddled; they could do more if their parents taught them more" (67%); and "everyone with high support needs autism needs a legal guardian" (66%).
Many respondents had heard or seen people claim that "everyone with high support needs autism can self-advocate" (30%).
0% of respondents hadn't heard or seen any of these claims. Others wrote in that they've heard or seen people claim that "I would have had high support needs if I wasn't abused/neglected/forced to take care of myself" and "you can't just be HSN autism; your symptoms are too severe, it must be something different".
Willingness to Disclose HSN Autism
2% of respondents were less willing to tell others that they have HSN autism because of how people talk about HSN autism. 3% were unsure because they didn't know if their autism is HSN, but they don't like the label because of how other people talk about it. 3% were unsure if how people talk about HSN autism influences their disclosure.
0% of respondents had HSN autism but didn't mind disclosing it. 3% didn't disclose for another reason, such as thinking it's no one else's business. 88% said this question isn't applicable to them because their autism isn't HSN.
Overall Consistency of Support Need Label Definitions
Consistency Across Support Need Label Levels
Respondents who started off selecting that "level 1 autism" is the best definition of LSN autism were the most consistent responders. 18% of the sample began with this definition and kept it for all choices (i.e., level 2 for MSN and level 3 for HSN). Only 2% started with this option for LSN but changed for MSN or HSN.
In contrast, 10% of respondents chose an ADL-based definition for the first option and kept it for all choices (i.e., can perform all ADLs for LSN, some ADLs for MSN, and no ADLs for HSN). 11% started with this option for LSN but changed for MSN or HSN.
10% of respondents also began with a definition based on intensity of support and kept it for all choices (i.e., LSN need no support, only accommodations, or support once or twice a week; MSN need support daily; HSN need almost constant support or supervision). 27% started with this option for LSN but changed for MSN or HSN.
Living situation was the least consistent. Only 2% of respondents started with this option (i.e., said that LSN can live alone without support) and kept it for all choices (i.e., MSN need support to live alone; HSN need to live with a caregiver or in a group home). 10% started with this option for LSN but changed for MSN or HSN.
Fit to Own Self-Reported Label
Overall, when considering the most commonly used definitions of autism support needs labels, 85% of respondents self-reported a support needs label that matched their self-reported ability to perform ADLs, ability to live alone, frequency of support needed, and (if relevant) diagnosed autism spectrum disorder level. 15% had some discrepancy. Of these, the most common discrepancy was the ability to perform activities of daily living; 10% of individuals self-reported either that they had MSN autism but could perform all activities of daily living independently or that they had HSN autism but could perform at least one activity of daily living independently. (Notably, all respondents could perform at least one activity of daily living independently.) The next most common discrepancy was the frequency of support needed (7% of MSN did not need support daily), followed by living situation (3% of MSN could live alone without support). 3% of individuals self-reported a DSM-5 level that did not match their self-reported autism support needs label, and 62% did not have a DSM-5 level diagnosis.
When considering only factors that the individual themself selected as defining autism support needs labels, 85% matched on all criteria. 8% did not match on core criteria, i.e., the individual selected that individuals with MSN autism must be able to perform some but not all ADLs, but the individual could perform all ADLs without support despite identifying as having MSN autism. Additionally, 5% matched on core but not expanded criteria. Of this 5%, one individual self-reported that they have moderate-high support needs despite being diagnosed with autism as an adult but having selected that both MSN and HSN autism require the individual to be diagnosed as a child. One individual self-reported that they have medium/moderate support needs despite having neither intellectual disability nor language impairment, both of which they selected are required for MSN autism. Finally, one individual self-reported that they have medium/moderate support needs autism despite selecting that MSN autism must be diagnosed as a child, but the respondent was undiagnosed. Additionally, one respondent (2%) refused to give any definitions for autism support needs labels, making it impossible to compare their self-reported moderate-high autism support needs to any definitions. (Notably, this individual was not diagnosed with autism.)
When comparing respondents' self-reported autism support needs label to their "best definition" for LSN, MSN, or HSN autism respectively, 93% matched. Again, one undiagnosed individual could not be compared because they refused to define any support needs labels. The remaining 5% was one individual who identified as having HSN autism, reported that HSN autism means being able to perform no ADLs independently, but could independently perform an ADL (transfer/getting around their home); one individual who identified as having MSN autism, reported that MSN autism means being able to perform some but not all ADLs independently, but could perform all ADLs independently; and one individual who identified as having MSN autism, reported that MSN autism means needing help daily, but reported needing help multiple times a week.
Demographics: Support Needs
Activities of Daily Living (ADLs)
Overall, most respondents (58%) did not need help with any activity of daily living. Others needed help with basic hygiene (37%), eating (23%), getting dressed (20%), toileting (8%), or getting around their home (8%).
("Help" in this context was defined as the respondent needing another person to do the task, in part or in full, or physically support the respondent with the task, or tasks that the respondent would not get done without this support. Reminders and accommodations were not counted, as is the norm for determining ability to perform ADLs.)
Instrumental Activities of Daily Living (iADLs)
Most respondents needed help keeping their home clean (69%), cooking (62%), shopping (59%), managing money (57%), and driving or using public transportation (56%). Only 16% could perform all iADLs without support.
(This question used the same definition of "help" described above.)
Frequency of Support Needed
Most respondents needed support for a few hours a day (36%) or multiple times a week (28%). Others needed support weekly or less, (20%), 6-8 hours a day (3%), all waking hours or 24/7 (7%), or never (7%).
(Similar to the definition described above, this question defined "support" as how often the respondent needed someone else to do something for them, in part or in full, or physically help them with something, or how often they received professional support like therapy. Accommodations, reminders, or support like "body doubling" were not counted.)
Type of Support
The majority of respondents needed mental health therapy (85%), accommodations at work or school (77%), and psychiatric medication (71%).
Many needed occupational therapy (47%), transition support or life skills training as a teenager or young adult (40%), social skills training (35%), physical therapy (34%), behavioral therapy (27%), speech or language therapy (26%), or a dietician or nutritionist (26%).
Relatively few needed vocational rehabilitation (15%).
In regards to specific types of help, the majority needed help keeping their home clean (74%), planning or making decisions (74%), staying fed (61%), managing money (60%), getting places in the community (58%), talking to strangers (58%), and talking to professionals (55%).
Many needed help preventing other people from taking advantage of them or abusing them (48%), maintaining hygiene or grooming (45%), understanding safety (40%), and communicating basic messages (for example, using picture exchange or an AAC device) (34%).
In this context, no respondents reported that they did not need support.
Living Situation
Most respondents lived with their parents (53%). Many lived with roommates or their partner (29%), and 16% lived alone. Only 2% lived with professional support workers. 0% lived in a group home.
Demographics: Other Relevant Factors
Educational Environments
Most respondents attended a mainstream school (94%). A minority attended online or virtual school (27%), attended a magnet or charter school (13%), or were homeschooled (11%).
A minority took advanced placement (AP) classes (40%), were in a gifted program (34%), took honors classes (32%), were in special education classes or a special education school (26%), or had an individualized education program (IEP) (24%).
Others wrote in that they were in non-special education alternative classes; described what sounded like it might be a 504 plan; reported that they had a 504 plan; and said they were in a "health school" (which sounds like what some locations call "hospital homebound").
Higher Education
Many participants had completed or at the time of the survey attended a college or university for a bachelor degree (37%) or associate degree (8%). 5% attended trade school. 3% attended inclusive postsecondary education (IPSE) programs. 15% began a higher education program but dropped out or failed out before completing it.
13% attended graduate school, and 2% attended medical or law school.
18% did not attempt higher education despite being adults. 18% did not attempt higher education because they weren't old enough yet.
One respondent was still in extended public school education due to their disability. One had some college credit through their high school but had not attended a college or university. One attended college or university for a certificate program as opposed to a degree program.
Employment
Respondents were presented the following employment situations in order and told to choose the first one that fit them: employed in one or more full-time jobs that they enjoy (19%); employed in one or more part-time jobs that they enjoy (13%); employed in one or more full-time jobs that they dislike (0%); employed in one or more part-time jobs that they dislike (2%); employed at a non-competitive job for people with disabilities (0%); take care of a home or other people without pay (0%); unemployed but looking for work (8%); unemployed by choice (0%); unable to work because of autism (26%); unable to work for other reasons (5%); not old enough to work or still in school (21%).
One respondent wrote in that they did gig work, which was unstable employment. Another wrote in that they can't work but don't know if it's due to autism or something else. One wrote in that they were self-employed.
Comorbidities
Most respondents had mental health difficulties (23% mild, 69% moderate to severe), physical health problems (44% mild, 26% moderate to severe), and ADHD (29% mild, 27% moderate to severe). A minority had language impairment (10% mild, 11% moderate to severe), intellectual disability (5% borderline, 2% mild, 2% moderate to profound), or substance misuse (10%).
Two respondents wrote in that they probably have ADHD, and others wrote in dyscalculia, Tourette's, and an undiagnosed learning disability.
"Challenging Behaviors" or Symptoms That Required Intervention, Therapy, or Treatment
Most respondents had required intervention, therapy, or treatment for extremely dysregulated emotions or easily triggered brief episodes of anger, anxiety, or depression (67%), severe anxiety or obsessive compulsive behaviors (60%), and severe sleep disturbances (50%).
A minority of respondents had required intervention, therapy, or treatment for hurting themself or others during meltdowns or due to extreme anxiety or overwhelm (45%), restricted or selective eating (43%), self-harming sensory seeking (38%), catatonia (28%), elopement (22%), psychosis (20%), very disruptive behaviors in public (13%), repeatedly trying to do things they could not safely do (10%), or eating non-food items (7%).
15% had not needed intervention, therapy, or treatment for any of these.
Demographics: Autism
Diagnosis
79% of respondents had a formal autism diagnosis. 16% had an informal diagnosis, and 5% were undiagnosed.
The most common diagnosis was autism spectrum disorder with no level (42%). Others were diagnosed with a non-DSM-5 diagnosis like Asperger's syndrome (12%), level 1 ASD (18%), level 2 ASD (12%), or level 3 ASD (3%). A minority had split-level diagnoses, specifically 1/2 ASD (3%) or 2/3 ASD (2%).
Respondents were diagnosed before age 3 (3%), ages 3 to 5 (7%), ages 6 to 8 (5%), ages 9 to 12 (5%), ages 13 to 15 (15%), ages 16 to 18 (23%), ages 19 to 21 (18%), ages 22 to 25 (7%), or ages 26 to 30 (10%).
Autism Community Involvement
39% of respondents had participated in an online social group for people with autism or other developmental disabilities, and 29% participated in an offline social group. 32% participated in a support group or skills group. 5% participated in a leadership program, and 5% participated in Special Olympics.
34% participated in none of these.
Autistic Friends and Family
Most respondents had friends or partners with low support needs autism (86%). Fewer had friends or partners with medium/moderate support needs autism (47%) or high support needs autism (7%). The same was true for siblings, parents, or other family with LSN autism (63%), MSN autism (31%), and HSN autism (17%). Few respondents had a child or children with LSN autism (3%) or MSN autism (2%), and none had HSN autistic children.
5% had no one else in their life with autism. One wrote in that they suspect that their girlfriend has LSN autism.
Autism-Related Job or Volunteer Position
Most respondents did not volunteer or have a job related to autism (77%). 8% provide support services to other people with autism, 5% research autism, 3% engage in autism advocacy, and 2% work in childcare or daycare settings. 7% were unsure.
Autism Support Needs
25% of respondents self-reported that they had low support needs autism, 42% low-moderate support needs autism, 22% moderate or medium support needs autism, 7% moderate-high support needs autism, and 5% high support needs autism.
Demographics: Other
Overall Support Needs
10% of respondents self-reported that they had low support needs, 31% low-moderate support needs, 38% moderate or medium support needs, 13% moderate-high support needs, and 8% high support needs.
Age
Most respondents were 13 to 18 (18%), 19 to 21 (21%) or 22 to 25 (36%). The remainder were 26 to 30 (20%) or 31 to 40 (5%).
Sex and Gender
Most respondents were AFAB (95%). 42% identified as nonbinary, 26% as women, 24% as men, and 8% weren't sure.
Race/Ethnicity
38% of respondents were racial or ethnic minorities. 13% were Native or Indigenous, 11% Jewish, 8% Black or African American, 8% Asian, 5% Hispanic or Latino/a/x, and 3% Hawaiian or Pacific Islander.
Referral Source
Most respondents found the survey through Tumblr (66%) or Reddit (21%). 3% found it through Discord, and 10% were sent it by a friend.
I recently asked in a series of poll posts (as well as in a more in-depth survey) how people define support needs labels for autism. The Tumblr polls are now closed!
The results are interesting.
First, it's clear that people do find support needs labels helpful. Almost all participants voted for a definition as opposed to voting that they don't think the labels are helpful (10.8% for low support needs [LSN], 7.1% for medium/moderate support needs [MSN], 5.7% for high support needs [HSN]).
Despite this, there is no consistent definition for support needs labels. No single option got above 40% even after removing the "See Results" votes.
Finally, there are surprising differences in distributions between the polls. This highlights that people didn't vote with a single consistent definition across polls and aren't thinking of the three labels in the same way. For example, 9.4% of voters defined LSN autism by the ability to mask, but the same was true for only 0.8% in the MSN and HSN polls.
Most notably, a plurality of voters defined LSN and HSN autism based on the intensity of support needed (for LSN, no support, only accommodations, or support once or twice a week, 28.5%; for HSN, needing almost constant support or supervision, 29.8%). In contrast, a plurality of voters defined MSN autism as being able to perform some but not all activities of daily living independently (33.9%).
It's possible that there was some confusion around what "activities of daily living" are.
Activities of Daily Living (ADLs; Tumblr sometimes calls these "basic activities of daily living", or bADLs, but this acronym is rarely used offline) are usually considered to include the following:
Eating (cutting up food as needed, lifting food to the mouth, chewing, and swallowing)
Basic hygiene (washing hands, bathing or showering, brushing teeth)
Dressing (selecting clothing that one can safely wear outside given the weather, putting the clothing on)
Toileting (continence, the ability to use a toilet, wiping)
Mobility and transfer (getting in or out of a bed or chair, getting around one's own place of living)
Needing help with an ADL means hands on help, someone else doing the task for you, someone walking you through or prompting you to do every step of the task, or the task not getting done if you don't have help. This does not usually include assistive technology, accommodations, or reminders. Some people can do ADLs sometimes but not other times; they're considered to need help with an ADL if they can't do it often enough that it negatively impacts their health, safety, or ability to live alone.
Instrumental Activities of Daily Living (iADLs) are different. These include cooking; cleaning the home; laundry; shopping; managing money; managing medications; transportation in the community (walking, driving, or taking public transportation); and work or school.
Keep in mind:
Many individuals need help with iADLs even if they can reliably perform all ADLs.
Many individuals only struggle with one ADL, like hygiene (for example, a severely depressed adult not brushing their teeth or showering).
"Needing help with every ADL" really does mean every ADL. Someone who can get around their place of living on their own by walking or self-propelling a wheelchair does not need help with all ADLs.
With all of that said, I'm curious how people would define support needs in autism overall!
For the purpose of this poll, consider specifically what you would think if someone told you their support needs related to autism. For example, someone might have low support needs from autism but have a severe physical disability.
Please only vote if you have or suspect that you have autism! Please reblog this for a larger sample size!
Which of the following definitions do you think is the best or most accurate description of support needs in autism overall?
