More Than Puzzle Pieces

We're two best buds who have experience with mental illness and growing up neurodivergent. Different is okay. #redinstead self diagnosis page for mobile users

[anexperimentallife]

This explains so much!

[yomikoreadsbooks]

Well, that’s just great!

[sweetdreamr]

my brain when somebody tells me to ‘try harder’

[stcndupeight]

This is why creating an environment of acceptance for people with ADHD and other learning disabilities is paramount. It’s not only the basically humane thing to do, it also actively helps them achieve the goal you’ve set for them. 

[loud-hands]

Increasing Rates of ADHD: Inclusivity Meets Criteria

An essay Mod R.B. posted for their English final.

Word count: 543

Estimated reading time: three minutes

Essay begins here:

Attention-Deficit/Hyperactivity Disorder (ADHD), once unknown, has become a household name. First identified in 1902 by British pediatrician Sir George Still, its rise over the years has not gone unnoticed. In 1997 it was diagnosed at a rate of 6.1% among children and adolescents. By 2016, it was diagnosed at a rate of 10.2%, a 4.1% increase in 19 years (U.S. Pharmacist, 2018). Some wonder if more children have ADHD or if more are just diagnosed. With ADHD more commonly known and understood, psychologists are diagnosing more people of color and females and parents are picking up on the signs.

           The face of ADHD, as well as many other conditions and disabilities, is a young, Caucasian male. Racism persists in diagnoses and many people of color were thought to be “challenging” and delinquents. Results of one study showed that age, sex, race or ethnic background, income, and region influenced a potential diagnosis (U.S. Pharmacist). Odds of receiving a diagnosis as a black, Latino, or other race child were significantly lower, ranging from 46-69% lower, than a white child (NCBI, 2013).

           In addition, we frequently forget the other half of the population. When you think of ADHD, you might picture a child who cannot stay still, poor grades, low productivity, disruptive behavior. Many of these common symptoms we think of display themselves differently in girls or not at all. We notice the behavior problems but those without the hyperactivity that makes up the H in the name fall under the radar. Girls with ADHD might get good grades but they must try harder than their peers. She may be written off as a daydreamer when she is really struggling to focus. Girls with ADHD more commonly struggle with self-esteem and experience anxiety and depression. Nowadays professionals know the signs and know what to look for in girls that may have been overlooked twenty years ago.

           Finally, parents are beginning to notice the signs more and more. We have more access to the internet now and when you type in ADHD, millions of responses pop up. Your doctor may mention signs of ADHD, or perhaps your child’s teacher. You hear about it everywhere. With people becoming more knowledgeable, it is expected that parents are picking up on the signs more and more. Our generation is ditching the “tough love” approach that harmed children with ADHD in the past and are taking symptoms seriously and taking their children to specialists.

           Here we see that diagnoses of ADHD are on the rise and there are many speculations as to why. Criteria has improved and psychologists are addressing other populations; non-white races and females are more commonly being diagnosed. There are disparities among racial groups when it comes to diagnosis of ADHD and racism may play a hand in this. As well as people of color, girls are being diagnosed more and more. ADHD often presents itself differently in girls and now psychologists know what to look for in girls. Not only has the criteria changed, but parents are becoming more informed and noticing the signs in their children. We see a rise in diagnoses as more people of color and girls receive diagnoses and parents notice the signs.

References:

 ·       2007 to 2016 Saw Rise in ADHD Prevalence in Adults, Children; Increase seen for adults of every race/ethnicity; prevalence rates highest for white individuals. (2019). Physician’s Briefings.

·       Jennifer Rainey Marquez. How ADHD is Different for Girls. WebMD. https://www.webmd.com/add-adhd/childhood-adhd/features/adhd-different-girls#1

·       Morgan, Paul L. Staff, Jeremy. Hillemeier, Marianne M. Farkas, George. Maczuga, Steven. Racial and Ethnic Disparities in ADHD Diagnosis From Kindergarten to Eighth Grade. NCBI. 2013. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3691530/

·       Mowlem, F., Agnew-Blais, J., Taylor, E., & Asherson, P. (n.d.). Do different factors influence whether girls versus boys meet ADHD diagnostic criteria? Sex differences among children with high ADHD symptoms. PSYCHIATRY RESEARCH, 272, 765–773. https://doi-org.lopes.idm.oclc.org/10.1016/j.psychres.2018.12.128]\

·       U.S. Pharmacy Staff. ADHD Diagnoses Dramatically Increase in U.S. Over 20 Years. U.S. Pharmacy. 2018.

[tuckoo]

ADHD

Not sure why ADHD is trending on Twitter, but sure, here’s my big post about ADHD, because now it’s too long to be a Twitter thread (ADHD, amirite?):

ADHD has possibly THE most inaccurate name for a medical condition:

 Dysregulation of attention, not deficit. We focus MORE intensely than neurotypicals on things that have caught our attention, because our neurotransmitter receptors (e.g., dopamine) developed atypically. But we struggle with switching tasks, because of this.

Inattentive-type ADHD won’t be as obvious, because it’s not the “physically disruptive boy child” stereotype.

Yes, it is a real neurodevelopmental condition, and yes, the medical community knows what it is.

No, not everybody “is a little bit ADHD.” Saying that shows that you haven’t educated yourself about the condition.

It usually manifests very differently for women, & MANY medical professionals aren’t informed about that.

Letting a child’s ADHD go undiagnosed and untreated leads to a VERY high risk of adulthood co-morbid anxiety & depression.

Letting someone’s ADHD go undiagnosed also leads to VERY high risk of addiction, because addictive substances trigger a fast release of dopamine, and the reward centers of our brains desperately need dopamine to live a happy & fulfilling life.

Black kids are 70% less likely (and Latinx kids 50% less likely) to be diagnosed than their white peers, because the most noticeable behaviors are attributed to willful misbehaving defiance, as opposed to a neurological cause.

This contributes to higher suspension rates for Black and Latinx kids, and higher likelihood of entering juvenile detention systems.

The misdiagnosis-to-prison pipeline is very real, with some neuroscience studies estimating that 40% of inmates in the US have ADHD.

Stigmatizing pharmaceutical treatments is harmful, because it inhibits people from accessing treatment.

Stimulant medications do not affect people with ADHD the same way they do for neurotypicals. They have a calming and focusing effect on folks with ADHD (unless co-morbid anxiety, depression, or other co-morbid conditions interfere)

Many folks with ADHD struggle to even remember to take their meds, and the most commonly prescribed treatments now have a time-delay mechanism that helps limit the risk of addiction.

Getting diagnosed as an adult made me cry, out of relief. I finally had an explanation, & I could forgive myself.

I am perpetually hyper-aware of how “not normal” I am in social interactions. I go through life feeling like an alien, every day.

This can lead to a perpetual cycle of self-isolation and self-consciousness, along with other maladaptive coping mechanisms.

Many symptoms that occur with Autism can also occur with ADHD: sensory overload, hyper-fixation/hyperfocus, directness, rejection of societal norms, emotional dysregulation.

The reason people with ADHD seem like they make every conversation about themselves is because they are trying to make genuine connections with other humans and stay actively engaged in the topic. Anything else seems superficial, disingenuous, and meaningless. People with ADHD seek genuine connection, and we are trying very hard to make that connection with you.

As with Autism, people with ADHD frequently reject society-imposed notions of gender and sexuality. These societal constructs are fairly useless, frequently harmful, and honestly feel contrived, awkward, and silly. I’m not just making that up. There is a VERY high correlation between gender dysphoria and ADHD (as well as Autism).

The reason I have to write everything down is because my working memory basically doesn’t exist.

The reason we interrupt in conversation sometimes is because we literally won’t remember what we need to say by the time someone finishes talking.

I forget someone’s name before they even finish their sentence. There are a million other things happening in my brain as I am trying to navigate a social situation.

Folks with ADHD can struggle with “Information Retrieval,” which is ironic for me, considering my PhD research focus. The information is THERE, however, and if there is an external stimulus to trigger, my brain can access and retrieve the information that I have stored.

So many folks who have ADHD struggle when they are put on the spot, unexpectedly. They can’t just conjure something out of thin air, so none of their words come out right, and then they will feel like an imposter.

It’s not all bad stuff. The running joke is that people with ADHD don’t just “think outside of the box”…they throw the entire box out, and provide innovative solutions that many wouldn’t have considered.

ADHD is highly-correlated with innovation, entrepreneurship, physical accomplishment, and artistry (e.g., Bill Gates, Michael Phelps, Simone Biles, Jim Carrey, John Mulaney)

We have so many hobbies, hidden talents, and interests…and we’re VERY enthusiastic about ALL of them. They used to have a word for folks like that, and there’s a reason scientists have postulated that Leonardo da Vinci very likely had ADHD.

I can detect someone else who has ADHD or Autism almost immediately (even if they don’t know it), & immediately form bonds with them. I don’t make the rules. It just happens. And I find it very refreshing to interact with folks who are neurodivergent, because I can let my guard down and just be myself.

[some-stars]

this is the first time i heard about the information retrieval thing and god, it’s such a relief that that’s a thing and not just me being broken. i mean it is me being broken but not in a way specific to me

[taptrial2]

writing an autistic character when you are not autistic - a masterpost

completely double spaced version on google docs here – this post is more blocky for the sake of people’s dashboards, but still long so people will be less likely to glaze over it. my apologies if that makes it hard to read

things to look for and avoid in an autistic character

• symptoms only manifesting as “nonverbal and rocking” • super smart / living calculator • super dumb / doesn’t understand anything • all the symptoms you can come up with for them are “awkward” and “has special interest(s)” (please do more research) • trains, technology, and/or math as special interests • acting like a child • getting treated like a baby • unreasonably cruel and uncaring about others’ reactions to them being cruel • if they’re comparable to sheldon from the big bang theory, start over • animal comparisons • a lack of feelings • please no stories about what it’s like to be autistic told by allistics

the right way to write an autistic person

• lots of symptoms, including secondary ones not included on a general diagnosis requirement list (here’s a list i rather like that was made by an autistic person – their blog is also a good resource) • having a good amount of general knowledge and actually talking about it (i cannot believe that i have to say this) • talking about things outside of special interests (again…. come on……….) (special interests are usually the default things our brains go to when theres no stimulation or we want to entertain ourselves – it isn’t literally all we think or talk about ever. if a conversation has no connections to a special interest, reconsider having your autistic character bring it up in a context that is not an introduction.) • explicitly expressed to be capable of attraction and romantic feelings – if your character is an adult, add sexual feelings to this point • capable of general functioning, just with a disability that makes it more difficult – not a walking disability (….sigh) • a wide amount of feelings and emotional turmoil (but perhaps only being able to express it in limited ways) • we’re people • just people whose brains are wired differently

things to avoid in research for an autistic character

• autism moms / autism blogs and websites not run by autistic people • any affiliation with autism $peaks means you should walk away and never look back • a scientist trying to create explanations for what autistic people do without actually asking / not mentioning asking autistic people • anything about a cure for autism • a person that “worked with autistic kids” phrased in the same way as “worked with animals” • talking about autistic people as if they are mysteries, are like animals, or are otherwise othered weirdos instead of people

things to look for in research for an autistic character

• actual autistic people talking about their experiences and symptoms • just stick to that and you’re good but it’s hard to find sometimes ngl. just look for the above red flags

things i would personally like to see in an autistic character

• less easy to swallow sadness and more destructive anger. i would love to see a canonically autistic character who was frustrated easily by small things and had trouble communicating why • not a story about being autistic, a story that happens to have a character or characters who are autistic – it isn’t pointed out or questioned, they’re right at home with the rest of the cast and not othered (a la symmetra from overwatch) • intensive sensory issues / small sounds making large reactions • clear communications about not liking x sensory thing (for example being touched) • poor motor skills / clumsiness and not being laughed at for it • walking funny (body bent downwards, walking very fast, walking slowly, big strides, shuffling, stiffness, etc)  – no one treats it as if it’s funny or something totally strange • a big personality that has a presence so they can’t be cast aside (but feel free to have quiet characters too) – if this was along with being nonverbal they would probably leap to being one of my favorite characters ever • a fear of asking for clarification on sarcasm or jokes because of past experiences and an arc about the character becoming more comfortable asking questions

>> if any fellow autistic people want to add something, feel free <<

allistics are encouraged to rb this

[loud-hands]

Interest Survey for Wheelchair Concept

I was disappointed by the cost of wheelchairs, not to mention the money spent if you want a sports wheelchair instead. I designed (as in logs and sketches, I'm not yet at the prototyping stage) an adaptable/adjustable wheelchair that can be adjusted and altered with removable add-ons to be appropriate for sports as well as typical use. I wanted to gather information on my target audience as well as find out if this is an idea that would actually catch on before I move forward with this idea and start contacting groups and developers. Survey here!

[loud-hands]

A Message Sent to Autism/Asperger's Hate Blog

Definite trigger warning, the website left me actually nauseated. Mentions of abuse and death, hate toward those with autism spectrum disorders, and just. Horrible stuff.

I came across heartlessaspergers/.com (seriously) and the neurotypical/.com and it was rather upsetting. Claims that we have no empathy and destroy families and ruin partners' lives. So. Autism S/peaks × 10. I know I probably won't be listened to but I had to say this. I know I probably won't change anyone's mind, open anyone's eyes, but here's my message:

I want to start by saying this isn't meant as an attack and I'm really, really sorry if it comes across that way. I'm an eighteen-year-old with autism. Asperger's Syndrome has been removed from the DSM-5 but were I diagnosed some years ago, I would have been diagnosed with Asperger's.

I know it may sound biased coming from the type of person your page warns against, but I very much disagree with the assumption that we lack empathy. Some of us have lessened empathy, I see this with my autistic brother and my, admittedly, abusive father I speculate may be on the spectrum, but this is not to say we're unemotional and lack empathy. Some autistic people can be downright bad. Some are good, some are neutral, as is the moral spectrum with all. My brother, for example, tends to lecture or make rather callous jokes to lighten the mood at someone's plight. He dislikes animals but when my pet died, he was awkward with it, I think struggling with his contempt and sympathy. He said, very sincerely, that he was sorry for my loss.

 I myself feel overwhelmed with empathy at times, feeling upset when my friend is, and she, also an autistic adult, shares this trait. I've cried to documentaries that show people grieving dead relatives or people suffering, I've cried at fictional books once in a while. Today, one of my neurotypical brothers was upset and I was left distressed when I could only bring him a drink and offer to listen when/if he wanted to talk. 

I know this is just my experience, not documented research, but studies have supported that we're not devoid of empathy:

https://www.scientificamerican.com/article/people-with-autism-can-read-emotions-feel-empathy1/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4048168/ (This one discusses lessened affective empathy in ASD, though  it highlights the differences between cognitive and affective empathy.)

https://www.scientificamerican.com/article/people-with-autism-can-read-emotions-feel-empathy1/

Many of us show empathy in different ways than our neurotypical peers. I notice that I tend to start spouting what I think is a logical approach and try to give advice instead of offering hugs. I spend the next hour worrying that I seemed unsympathetic or that I was overstepping by offering advice when I wasn't asked for it. We often struggle to recognize emotion by someone's facial expression or tone, which leads to some of us seeming aloof. Even when I can detect it, I never know how to react.

And I won't deny some of us truly ARE unempathetic and/or cruel. But I don't think this is purely genetics - I think this is how the environment shapes and interacts with these traits. I know I keep citing my own experience and I'm sorry for that, but from my own upbringing, I can see how I could have become a very different and much colder person. After about kindergarten my "quirks" stopped being just little kids being little kids. Friendships were difficult, the other kids matured faster than me with some things, and teachers assumed I was deliberately spacey and slow with my work. None of this was helped by a difficult home life (unrelated to my autism). In fifth grade I had a teacher who actually bullied me and ruined my desire to try in school for some time. I was playing imaginary games while the other girls were well past that. I am and have always been a bit of a pushover and I let a group of girls choose what I wore and paint up my face in makeup, all the while calling me ugly and insulting the clothes I wore to school. I thought this was just the way friends were and that they were being kind and helping me. I wound up violent, argumentative, hating everyone for years. It took my home life cooling down and my mother putting me in an online school for me to be able to assess my behavior and what I had become. 

I'm by no means perfect, not a saint. I'm struggling with my mental health and the responsibilities of adulthood. My relationships, I feel, are different from that of neurotypical young adults. For a long time I didn't have any friends and though we're often seen as loners (and we truly can be), I was incredibly lonely. I have a friend now, and for my entire life I could only handle one friend at a time, latching on and driving them away. It worked out well this time around as we're both equally clingy. I feel regular labels can't properly define out friendship, transcending friends but not romantically involved. I can't imagine myself having a romantic relationship and the idea of balancing my best friend and a hypothetical girlfriend overwhelms me. I show my appreciation by knitting and drawing for her, and she's like me and recognizes my affection. I don't like hugs or much touch. I don't know if I could have a romantic relationship or sometimes even a platonic friendship with someone who was neurotypical because I'm not sure how our ways of affection would mesh. Many autistic adults can and do manage happy relationships with neurotypicals but I know that I and others like myself might have an unhealthy relationship because the neurotypical overwhelms them and the neurotypical feels unfulfilled. 

I love the idea of fostering children one day and I'm majoring in special education, and sometimes I really do worry I might be emotionally negligent, but that I truly feel I can handle, and this is where the overwhelming empathy comes in, to the point that I feel an immense sense of duty to help kids in need and those with special needs and daydream about my teaching plan, baking together and other bonding activities with future foster kids. 

I'm sorry for the ramble, but from what I've seen of your page, it seems you mostly hear from neurotypical people. I want to give an autistic voice and try to show that many of us really DO feel empathy, and give experiences of my own. It's often upsetting to see us painted as monsters. I'm sorry for this dark turn but there are so many autistic kids, teenagers, adults that are MURDERED for being a "burden" and such. There are facebook groups where parents feed their kids bleach to try to cure them of autism. I've really cried for these people, especially the children. I feel like I need to be a voice, an advocate, especially for those on the more severe end of the spectrum who often can't or struggle to do it for themselves. Autistics have an increased risk of depression and suicide. I myself am taking a few antidepressants, but I don't think depression is an effect of autism itself. Stigma hurts us. I won't defend autistic abusers, there is no justification for ANY abuse, but we're not all evil. People are born autistic, but autistic people aren't born evil. No one is. 

Thank you for reading,

R.B.

- Mod RB

[loud-hands]

Disability and Neurodivergence Rights Petition by Mod RB

I've seen a lot of needless death in disabled communities - murders, negligence. Perpetrators are often let off easy. I want to see this change. I've started this petition. Please, if you would, take a look. But I want to mention that stories I've shared jn this link may be triggering to some. Proceed with caution.

-Mod RB

[loud-hands]

Disability and Neurodivergence Rights Petition by Mod RB

I've seen a lot of needless death in disabled communities - murders, negligence. Perpetrators are often let off easy. I want to see this change. I've started this petition. Please, if you would, take a look. But I want to mention that stories I've shared jn this link may be triggering to some. Proceed with caution.

-Mod RB

[13faeinapenguinsuit]

I would rather let a “special snowflake” into the autistic community than exclude an autistic that needs support and cannot get a clinical diagnosis. I would rather validate ten “special snowflakes” than invalidate one autistic who needs support and cannot get a clinical diagnosis.

I would rather welcome a hundred “special snowflakes” without question than force an autistic to disclose their entire life to me just to get the support they need when they cannot get a clinical diagnosis.

I would rather help those that don’t need help, than deny help to those that need it.

[loud-hands]

I think one of the biggest things that have bothered me since I was told I have a probable autism diagnosis is how everyone acted like it was an awful disease I was carrying along with me. Like this tumor that was growing on me. Even the ones who have been very supportive, and there aren’t many.

My mother has been crying that she should’ve noticed it earlier. I was always “the difficult kid” to her because I was the first child and she didn’t know anything about autism back then. I hit my milestones so she didn’t understand. But I still don’t understand why anything has to change. I’d like an autism diagnosis mainly so I can have better anxiety/depression treatments, understanding in future workplaces and for some closure after a life of feeling like everyone had been handed a How to be a Person rulebook at birth except me.

But a diagnosis isn’t going to change anything in me. It’s been a part of me all my life and it’s why I am how I am. While my parents wail about how it could’ve been different, I feel like they want to remove an integral part of my personality. And that feels like crap. Parents need to educate themselves about autism, and how to react when a family member is diagnosed. It’s not something terrible to deal with. It’s just a way for your child to potentially receive any help and care necessary for them to reach their full potential.

- Mod A

[loud-hands]

Also struggling with a diagnosis. We're both going in circles, going through different steps, and still somehow stuck at square one. I'm trying to get a new psychiatrist so hopefully that boosts the process.

It's frustrating, really. Sometimes I think back to past behavior and wonder, how is it that I wasn't diagnosed ages ago, at an age where examiners wouldn't scoff at the proposal? But I also think I was spared a diffetent struggle; if I had been diagnosed as a small child, my very young mother would have despaired (which, discussing this with me recently, she agreed she would have done) and my maternal grandmother would have very likely had me in ABA therapy.

My trade-off was being dubbed as spacey and annoying. Teachers picked on me for things I couldn't help and I've been in a perpetual state of feeling like I don't belong, growing up lagging behind peers who moved onto videogames, boyfriend and girlfriends, while I played my imaginary games. Coming even close to a diagnosis has been relieving, honestly. I feel I have a better understanding of myself and I know why I did some things.

My mother is the only family member I have open communication with about this, though she doesn't care much about a diagnosis. My father and I have never been close, and since this conversation personal matters have been blacklisted. He refuses to believe I'm autistic because of some stereotypes about it, and unwillingness to believe he spawned a "defective child".

The moral of this is what A said and I couldn't say it better myself. These mindsets need to go. I'm super liberal but it bothers me that there's no talk about issues faced by autistic children and adults. We're our own advocates and we're brushed behind voices of people who don't hear or understand us. I'm part of the LGBT community and we didn't get anywhere being quiet. I'm a woman and we didn't get anywhere being quiet. I want to be loud. I want to be heard.

We're people and our voices matter.

- Mod RB

[loud-hands]

I think one of the biggest things that have bothered me since I was told I have a probable autism diagnosis is how everyone acted like it was an awful disease I was carrying along with me. Like this tumor that was growing on me. Even the ones who have been very supportive, and there aren’t many.

My mother has been crying that she should’ve noticed it earlier. I was always “the difficult kid” to her because I was the first child and she didn’t know anything about autism back then. I hit my milestones so she didn’t understand. But I still don’t understand why anything has to change. I’d like an autism diagnosis mainly so I can have better anxiety/depression treatments, understanding in future workplaces and for some closure after a life of feeling like everyone had been handed a How to be a Person rulebook at birth except me.

But a diagnosis isn’t going to change anything in me. It’s been a part of me all my life and it’s why I am how I am. While my parents wail about how it could’ve been different, I feel like they want to remove an integral part of my personality. And that feels like crap. Parents need to educate themselves about autism, and how to react when a family member is diagnosed. It’s not something terrible to deal with. It’s just a way for your child to potentially receive any help and care necessary for them to reach their full potential.

- Mod A

[loud-hands]

Meet the Mods

A is a twenty year old U.K. national with no education, job or life plan. Currently trying to battle through the ridiculously tedious and infuriating process to get an autism diagnosis (despite several doctors and psychologists all agreeing that they think she is autistic). Stuck at home with mental health issues. She doesn’t do much. Mostly just reads and writes.

RB graduated from high school in May and is in a weird limbo state, looking for at-home work and repeatedly finding pyramid schemes. Stuck at home with mental health problems, she knits day and night. She's just started drafting a book about a preteen whose just been diagnosed with autism dealing with parents mourning their daughter that's still alive and unchanged.

[loud-hands]

Self Diagnosis

Self diagnosis is a complicated and controversial topic that needs to be discussed more. In many cases, a formal diagnosis may be best. But what some about neurological conditions? Learning disorders? For many people, self diagnosis might be their only shot.

Older teens and adults may struggle to find autism specialists, for example. Autism and ADHD may not be identified as easily in girls. There are many reasons a person may not have a professional diagnosis but they still may identify with symptoms of a condition.

For many of us, a label brings comfort. It helps us feel that we are not alone, helps us understand ourselves better. It allows us to find a community. And while a formal diagnosis may be ideal, we should respect those who don't have access to such services and offer them our support.

Various self diagnostic tools and tests can be found online. These are useful in finding if a diagnosis may fit you, and these tools may also be useful in knowing if you should seek a specialist if available.