Hello dont plan to post much but thought short intro would be nice :)
Maybe call me Noon?
Have autism, am categorized as severly disabled by government, but prefer say am medium support needs, feel like that fits me more.
Am early twenties and love all cute things, especially love cute games.
Im very limited in communication, cant speak. sometimes able to say sounds resembling words, communicate with mixture of sounds, signs, writing and AAC device.
Forming sentences and using correct grammar is often hard, sometimes able to.
Love reading other peoples experience with autism and moderate or High support needs.
Very very hard time with talking to people, always try my best be nice do everything right, but sometimes unable to respond or interact. Is never with bad intentions never personal. Sometimes get too anxious scared overwhelmed.
If ever say a wrong thing, please tell me!
Tags I use:
(If dont want to see type of post can just mute tag!)
#NoonAACsymbol : for all AAC symbol drew myself!
#NoonAAC : for all updates and post on AAC and AAC device
#Noonthought : for all opinions or big thoughts I have
Might update more soon but think those three most important right now :)
Will post rarely, often forget tumblr there or is too overwhelming.
Thats it! Hope everyone has good day :)
since june 2025 start using tag nonverbal. old tags say semiverbal because wasnt sure if allowed call myself nonverbal and didnt know if this permanent, but likely is.
keep in mind because lost ability to speak later in life will have different experience than people nonverbal since birth.
they really don't respect the time of disabled people. your application can take up to 12 weeks. the specialist waitlist is 3 years. your assessment will be any time within the next 6 months. let us know if you cannot attend this appointment you waited 7 weeks for and we'll reschedule next year. we've decided to assess you at this time and day and you have to be available or any support you dared to apply for is not going to happen. and in between these long bouts of waiting you have to survive the everyday
It’s really irritating to me whenever I see videos of other severely disabled people saying it’s hard to wash their hair because of their illnesses and people suggest “just” cutting it off. As if hair isn’t a huge part of peoples’ identity a lot of times, if not self expression. And the misconception that shorter hair means it won’t be as bad for someone with severe myalgic encephalomyelitis is just incomprehensible to me.
If they’re not suggesting something, believing it’s a one size fits all solution (bed hair washing set ups, shampoo caps) their solution is to just… get rid of a part of our identity to suddenly “make it easier”. Long hair isn’t the issue when every movement and sensory input is punishing. Making it easier isn’t always the point. Sometimes the point is just sharing “this is what I go through because of my disability, something you might not think of if you’re not disabled/don’t have my disability”. It’s no different than any other person showing a day in their life or how they care for their hair. It’s just not conventional for you to see people still struggle with all the added help.
Why would your first suggestion be to remove another part of myself? Why would a positive resolve to you be for my friends and people like me to change more of who we are just because we are simply sharing something that will affect us regardless of the length of hair we have? We will always struggle with personal care tasks/ADLs but that doesn’t mean we’re looking to make it the easiest way if it means losing more and more of ourselves. Sometimes even with a struggle it is the easiest without giving up the final fight with something. Respect that.
April 21st: Do you have trouble keeping up with personal hygiene? Bathing, brushing your teeth, flossing, etc? Is it because of sensory reasons? Is there anything you've found helps with this?
Answer: personal hygiene is something where carers help a lot and i have many ways to make it easier.
showering and washing hair is always seperate, having both hair and body wet is too much for me.
washing hair am not able to do at all because of coordination and sensory issues, carers do it for me. but can brush and put in the curly cream myself even if its challenging!
showering is always done sitting in bathtub, carers help me get everything ready for it.
brushing teeth is done with help from tooth brushing app where you catch pokemon! carers help me get started and if needed talk to me hold my hand to distract from sound and feeling of brushing teeth.
it took us a while build routine figure out what kind of help needed but now is working pretty well :)
April 19th: Talk about speech. Are you nonverbal? Do you use AAC? What is it like if you are? If not, do you have trouble controlling the tone of your voice? Do people often misread you based on your tone (thinking you're angry when you're not for example)? Do you have trouble controlling the volume of your voice, especially when excited about something? Do you tend to speak in a monotone?
Answer: am nonverbal, cant speak at all. main ways to communicate are AAC device, writing and some signs (but struggle to do them right and mix home signs with locally used easy versions of signs and sign language, so mostly only carers understand them)
wasnt always nonverbal, fully lost speech over a year ago (in late teens early adulthood lost many skills, likely experienced late regression) and then got diagnosed expressive language disorder. so many doctor appointments and brain scan and assessments and no cause was found, doctors assume is 'just' autism.
how well i communicate always depends on how am doing and wether am writing or using picture based AAC. Correct grammar can also be hard.
“Presuming competence” in the context of autism doesn’t mean assuming they have no cognitive deficits, or that they will 100% understand everything their allistic peers would. It means you should go into an interaction with an autistic person without assumptions about what they can and cannot understand. It means to treat them with respect, and act like they can hear and understand you, and to explain gracefully when they don’t.
April 6th: Do you feel that autism affects the way that you view/interact with media? In what ways? Talk about it.
Answer: it affects it a lot, i struggle a lot to watch new things or things not related to interests, even if really want to watch them. often is just too much new input.
sometimes will be able enjoy new things, mostly watch with family and they dont mind if need a break to process something.
also have few comfort shows will rewatch a lot and when really overwhelmed carers often watch with me kid show used to love as a child, know all the episodes and story always follows same structure so doesnt feel overwhelming but still distracts from feeling bad.
April 7th: Talk about autistic characters in media. What are your favorite canon autistic characters? Are there any characters that you view as autistic, that aren't officially so? What about them makes you think they are autistic? How do you relate to them? What would you like to see in autistic characters in the future?
Answer: love love love attourney woo! is probably my most favorite autistic character ever. also love renee from loop.
would love to see more AAC users, know carl the collector has one but that show not available where i live :(
Reminder for this April that the puzzle piece is not inherently bad. It wasn't created by Autism Speaks, rather by National Autistic Society in 1963, made to symbolize that autism was a "puzzling" condition. Many autistic people especially higher support needs folks rely on the puzzle piece's visibility and awareness for safety. Don't judge people solely by what symbol they use or prefer, there's far more important things to focus on this month.
April 4th: Talk about online social interaction. Do you feel that being able to interact with others online, such as on social media, has been a positive or negative thing for you? Do you think its easier, harder, about the same as in person communication?
Answer: online direct interaction thats not just commenting or answering questions is very rare for me, often feels very overwhelming.
overall think online and in real life both really difficult, but online more.
in real life am with carers and people can easier tell am disabled and that can make them more considerate or understanding if struggle.
in past online had bad people try take advantage of me.
but also online was only place ever where found others that fully lost speech later or experienced big skill regression and also many people share helpful things so that is very nice.
April 1st: What age did you find out you were autistic? If you have a diagnosis, what was the diagnosis process like, if you can remember it?
Answer: found out in early teens when got diagnosed. already struggled for many years but got so bad had to go to mental hospital and doctor there diagnosed me.
diagnosis was few days about 2 hours per day plus IQ test. Had never heard about autism before that and parents also had very limited knowledge.
might make longer post when have energy but wanted to share good news!
since beginning of month been going 4 days a week to day centre! for now are only trying it out but has been good so far!
day centre has become safe place for me and am so so happy! didnt think ever could happen but it did! care workers there said did so great managed really well and think so too!
spend last few months mostly with interests and going to day centre, so was very rarely active on tumblr, but hope to do autism month questions!
most of the time am just living live, not really think about fact am disabled, but sometimes when do realize it hits me all at once.
like, am aware am disabled, am aware that own live is different from people my age without disability. But sometimes is just sad moment of really understanding what that mean.
so so much grief about not be able do things people my age do, so upset about every missed experience.
Going to parties, attending school and then university, going out late with friends, getting a drivers license, getting own apartment, doing job i dreamed of doing since was a little kid.
or even small things like going somewhere on own or making my favorite food or washing my hair when i want to, not having to wait until carer has time to do it for me.
all that and much more not possible.
most of the time am fine with my life, am content.
But everytime have moment where see all the things missed out on, is very very hard.
Rules: There are 30 questions corresponding to each day in April. Answer each question in your own separate post. You can answer all or just as many of them as you want. Make sure you tag your responses #30daysofautismacceptance and you can put them in the various autism tags too (#actually autistic, #autistic, #autism etc). Please help spread this around before the start of April! And with that, I hope everyone enjoys the questions and has fun with this year's autism month prompts. (Prompts under the read more button)
April 2nd: Are there some things in life that you either learned much later than your neurotypical peers or not at all?
April 1st: What age did you find out you were autistic? If you have a diagnosis, what was the diagnosis process like, if you can remember it?
April 3rd: Do you feel like being autistic makes you easier to take advantage of? More gullible perhaps? Talk about a time where this happened to you.
April 4th: Talk about online social interaction. Do you feel that being able to interact with others online, such as on social media, has been a positive or negative thing for you? Do you think its easier, harder, about the same as in person communication?
April 5th: Do you often interact with other autistic people? Online or in person? Do you find it harder, easier, about the same difficulty as with neurotypical people?
April 6th: Do you feel that autism affects the way that you view/interact with media? In what ways? Talk about it.
April 7th: Talk about autistic characters in media. What are your favorite canon autistic characters? Are there any characters that you view as autistic, that aren't officially so? What about them makes you think they are autistic? How do you relate to them? What would you like to see in autistic characters in the future?
April 8th: Do you think, since the time you found out you were autistic, that society's views on autism has gotten worse, better, or about the same? In what ways?
April 9th: Are you ever prevented from doing things because of sensory issues? For example, clothes you'd want to wear, places you'd like to go, etc. How does it make you feel? Talk about it.
April 10th: Are holidays/birthdays/similar social gatherings something that you find difficult in any way as an autistic person? Talk about it.
April 11th: Do you find doctor's/dentist's/etc appointments difficult as an autistic person? Why? Do you have trouble booking appointments or managing insurance? Do you have someone that helps with this? Do you have someone come to appointments to help advocate for you?
April 12th: Do you struggle with a sense of loneliness/social isolation? Has it become better, worse or about the same since you were younger? Is there anything that helps with it?
April 13th: Have you ever had to (or wanted to) correct someone's misconception about autism? What happened? Talk about it.
April 14th: Do you have issues with change? From small changes like a disruption to your daily routine, to big changes like a new boss at work for example. How does it affect you? Is there anything that helps with it?
April 15th: Talk about special interests. What is your current special interest? What do you like about it? Do you dislike anything about having special interests? Talk about past special interests.
April 16th: What are some accommodations that you would either like to have or already have to help you in your everyday life as an autistic person? If you could change an aspect of society to make things easier for you as an autistic person, what would you change?
April 17th: How do you feel about various autism organizations, such as ASAN, Autistic Women's and Nonbinary Network, Autism Speaks, etc
April 18th: Have you had trouble, now or in the past, with people not respecting your boundaries as an autistic person? For instance, people not listening when you don't like hugs or being touched etc.
April 19th: Talk about speech. Are you nonverbal? Do you use AAC? What is it like if you are? If not, do you have trouble controlling the tone of your voice? Do people often misread you based on your tone (thinking you're angry when you're not for example)? Do you have trouble controlling the volume of your voice, especially when excited about something? Do you tend to speak in a monotone?
April 20th: Give a shoutout to some of your favorite fellow autistic people. Could be an actor, writer, youtuber, a family member, another tumblr blog, etc. What do you like about them and/or their content (assuming they're an actor/youtuber/etc)? Would you recommend other people follow them?
April 21st: Do you have trouble keeping up with personal hygiene? Bathing, brushing your teeth, flossing, etc? Is it because of sensory reasons? Is there anything you've found helps with this?
April 22nd: If you had to describe to someone who knows nothing about autism what it feels like/what its like to be autistic, what would you say?
April 23rd: Are you generally a talkative person or a quiet person? Do you feel like this is influenced by being autistic? Do you tend to infodump about things you are interested in? Do you feel like people don't listen to you?
April 24th: Do you have trouble interpreting other people's intentions? Is it hard for you to tell when someone is deliberately being mean to you? Do you have trouble picking up when someone is lying to you or trying to trick you? Talk about it.
April 25th: Do you feel like you got the support you needed growing up as an autistic person? From your parents/teachers/other adults? What did they do to support you? What do you feel you would have needed that you didn't get support wise? Do you feel like you have the support you need at the age you are now?
April 26th: Lets talk about food. Are there certain foods that you cannot eat due to sensory reasons? Do you tend to avoid spice? Do you eat a lot of the same foods over and over? Do you have a same food that you tend to eat often because its safe or familiar?
April 27th: (If the first question doesn't apply to you, you answer the second one. Or if you want you can answer both) Are you lgbtq+? Do you feel like there's any intersection between both identities? Alternatively, if you're not: have you experienced ableism before? What was the situation in which it occurred? What did you do? Have you ever had someone start treating you differently after they found out you were autistic?
April 28th: Do you prefer person first language (example: person with autism) or identity first language (autistic person)? Why?
April 29th: Let's talk about relationships, both platonic and romantic. How are your relationships with your family (parents/siblings/etc)? Are they generally supportive and understanding of you as an autistic person? If you have (non-autistic) siblings, do you feel as though you were treated differently from them growing up or even now? What about friends? Is making friends something you find hard or easy? How does being autistic affect your friendships? Are you now or have you ever been in a romantic relationship? Have your partners been understanding of your needs as an autistic person? In what ways does being autistic affect your relationship?
April 30th: Autistic pride. What does being autistic mean to you? Are you proud to be autistic? Why? What would you like your final message of autism acceptance month to be?
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