It used to be impossible for someone to be diagnosed with autism if they were not *significantly* intellectually delayed, if not disabled.
This isn't part of the modern understanding of the condition.
Another (minor) aspect is that autism and ADHD couldn’t be diagnosed concurrently until 2013. You either had one or the other, but not both. Many people got diagnosed with ADHD as a kid but never knew they were autistic as well.
On top of that, autism (and ADHD, tangentally) often present differently in males and females, and up until fairly recently they only used the typical male presentation when screening and thought it mostly occured in males.
So the shy little girl who taught herself to read at the age of three, loves ponies and has them on her bedspread and backpack and lunchbox and in this book she's reading and is excited to show them to you, and has notably poor hand-eye coordination could be easily overlooked while her rambunctious male classmate who doesn't talk about anything but dinosaurs, rocks in his chair when overstimulated and doesn't make eye contact with anyone would have been diagnosed early.
To be fair, there’s also a pretty decent amount of debate over how much presentation actually differs between males and females, and how much of it is due to differences in how girls and boys are raised/perceived. Sometimes signs that raise a few red flags in boys might be totally ignored in girls, and so they tend to be diagnosed later (I was diagnosed at 20, which apparently isn’t super uncommon among autistic women).
That’s not to say that there’s no differences in the ways autism (and possibly ADHD, though I’m admittedly much less informed on that) presents itself, just wanted to add to your point!
My youngest, male, was diagnosed at five and received fantastic early intervention therapies. My oldest, female, was her early 20s when she was diagnosed. We didn’t see the signs until after we received more education and experience raising her younger brother. She’s doing well overall, but I always wonder if early intervention could have made things easier for her.
I'm a woman diagnosed at 64 (a few weeks ago). I often wonder if there aren't some advantages to forcing myself to do the harder things, like making eye contact, varying my intonation, asking people questions about themselves, etc. I was even in retail commission sales in my 20s, which took a tremendous effort at warming up to the job in any new store I worked at.
I hear other autistic women complaining about how their early-diagnosed brothers get so much more help and accommodation; they, too, wonder which had the more advantageous upbringing experience.
That said, I very much feel that autistic people who ask for accommodation should get them if it helps them do better or feel less uncomfortable in school or at work. Anyone with any disability ought to be made more comfortable whenever possible. There's nothing wrong with giving everyone a chance to succeed.
American social culture is trending downward where caring for the happiness and wellness of other people is concerned. Unequivicolly, that is a bad thing.
When I was originally diagnosed with 'aspergers' prior to it being folded into the general autism diagnosis I had spent a considerable amount of effort training myself into recognizing body language and accurately simulating emotional responses based on context clues- things that I couldn't just inherently grok like normal people. These days I'm exceptionally good at passing for neurotypical with the exception that I talk too much about things I like.
But it took years of training. Something else I trained: jokes. I used to be unable to improv jokes. I could learn a joke and repeat it, but that was it. So after I got my diagnosis, I made a special effort to train myself to pattern match context clues against a big box full of 'things that are funny'. The resulting 'Joke Engine' produces funny results 90% of the time, which is a huge boon. The downside is that only 60-70% of what it produces are things I can actually *say* to people, with the remainder being highly inappropriate.
Still funny tho.
>Still funny tho.
Lol, I'm getting the best situations played out in my head here. Like:
"So anyway, blah blah"
*Snicker*
"What?"
"Oh. Nothing. Nazi joke."
Welcome to the Internet, where there's an audience for every joke, guaranteed to actually have some members who find awful shit funny instead of just self affirming.
For example, give Last Podcast On The Left a shot if off-color humor about serial killers and cryptids is your thing.
64, wow. That’s it though, isn’t it? There just wasn’t much in the way of awareness, education, therapy, or accommodations back then to cover the entirety of the spectrum. My daughter was born in ‘96. She struggled at school, both socially and academically, but still was under the radar enough that she didn’t receive any accommodations. As parents we didn’t even know what that term meant at the time. We eventually pulled her from public school at 16 and homeschooled her. She got her GED, went to college and earned an AAS degree, and now works as a medical assistant in a women’s clinic that she loves. She has little social life though, but she’s OK with that for now. I’ve encouraged her to maybe find a therapist that she could work with, but she tells me she is happy where she right now in life, so that is what I have to go with and be grateful she’s found a place where she feels comfortable and fulfilled.
It sucks, doesn’t it? I’m about as old as your daughter. I got very little support despite my diagnosis. Some extra time on exams, which was a little helpful at least. But no one ever connected the dots between me failing PE and my autism. I struggled socially, was even bullied because of my diagnosis. I didn’t start struggling academically until university, and I eventually dropped out. But I’m happy with where my life is right now. I have a nice job and a bunch of friends.
> There just wasn’t much in the way of awareness, education, therapy, or accommodations back then to cover the entirety of the spectrum
And for a lot of other things. For instance, taking a hammer to someone's left hand so they'd be forced to switch to their right for a while in the hope they'd start using their right hand more generally for the rest of their life.
My left hand was tied to the desk in kindergarten in 86 to encourage me not to write with it. I already knew how to write, so I had to relearn. I actually had pretty neat writing before then, with my left hand. Now, with my right? Not so much. I still use my left for some things though. Like eating, using my camera, shaving my legs, a computer mouse, stuff like that. But I’m right handed for baseball, writing, etc. looking back, I assume it was a lack of left handed resources- no left handed desks, scissors, etc.
(i dont mean this to place any "blame" or your child self)
my grandmothers left hand was tied down, so instead of using her right hand she held her pencil in her mouth until they let her use her left hand
My grandmother took it upon herself to slap my left had with a ruler anytime I tried to do anything with it.
Ya, nothing worse than a relative that believes they are doing a good thing for you.
Agreed. I've had to struggle to learn to hold conversations with people and force myself to make eye contact but I'm kinda glad I've been able to overcome a lot of these things solely because I didn't exactly know why I was having issues but knew I wanted to change them.
I wonder, if I had been diagnosed at a young age, would I have thought "oh well, nothing I can do about it" and just accepted my brain was different instead of tackling it head on and solving it?
It sucks to feel shame and frustration and awkwardness but it's also why I've improved for the better. I'm happier with the coping skills I've had to learn on my own. At my age I don't want or need accommodations but it would have been nice to have that when I was younger.
However, I also don't think I would have grown into the person I am now if I had been coddled. I just don't like the idea that we're helpless creatures that need protection to survive. I've overcome the difficulties and function just fine maintaining a career and a home without accommodations.
That being said I would 100% respect the boundaries and accommodations someone asked for, but I don't seek that personally.
And you just perfectly hit the nail on the head when it comes to the paradoxical nature of social protections. We can so easily steal agency and self reliance from young people while parading around with the best of intentions.
I dont have an answer for the problem but with a situation like this I think the most important thing is just being able to see the dangers. Another reminder that we need to see people as individuals, not just as representatives of a subgroup.
America has had some very weird rules when it came to not "enabling" someone with a disability too much in the past. They saw any kind of accommodation that was different from the norm as a crutch that someone might get over reliant on. Some of that attitude still persists today, unfortunately, and often by people who feel like if they themselves didn't get certain avenues of help, no one else should either.
One of the weirdest ones was they wouldn't teach people Braille unless they were completely blind. If they were severely vision impaired but had even a little bit of sight, Teachers and the like worried that partially sighted students might "cheat" and look at the letters instead of learning them solely by feel. Which was a weird thing to worry about because those Braille dots are difficult enough for people with 20/20 vision to spot easily. If they have a tough time perceiving printed letters on a page, they're going to have an even tougher time telling what each Braille letter is by sight.
I hate the "crutch" logic, as someone who uses my prescribed ADHD medication and isn't ashamed of it. If any of these people had actually had to use crutches in their lives they'd know that crutches are extremely fucking important for people who need them.
It annoys me more when it comes from within the community - like oh good for you you choose not to use medication, that doesn't mean I don't need it because surprise suprise, people have different levels of severity and need support in different ways.
It's the same with "it's not a disability, it's just different" like no there are indeed things I can't do or need support to do and telling people we're just different makes it sound like we don't need support. It's like saying "I just swim a bit differently" versus "I can't swim". Bro I need the floaties or I will drown.
Yes, I'm 62f, never been diagnosed, did well in Universities. I just figured it was something wrong with me that I rarely dated, could not keep a relationship, wondered why everyone around me seemed to be getting married, having kids, having lives, and I was always on my own. Part of it was circumstances. I'll have my mortgage paid off in seven years. I rarely leave my house anymore. There is just no reason to.
Diagnosed as a male at 5, now 27.
I am high functioning, probably a lot of it due to early intervention, but it did make it so I am very reliant on other people adapting to me and me having a very hard time adapting to others.
Also as a product of the time, I was taught to constantly be aware of myself, mask a lot, behave well, try to understand everything and read through the lines, which is just so exhausting but subconsciously it's my default state by now. Makes it so there is little energy to improve other things, or adapt to my wife instead of my wife adapting to me constantly.
So there are benefits, but also drawbacks as with everything.
I think early intervention makes things easier regardless of the condition. My 5-year-old son has been diagnosed with autism and has also been diagnosed with Ehlers Danlos syndrome. It took me until I was 19 years old to get the Ehlers Danlos diagnosis. Knowing what I know now about my own EDS makes it a lot easier for me to intervene at a young age and get him the supports and care that he needs to achieve his best possible outcomes.
I have ADHD, every book or website will tell you that women typically have the inattentive presentation. I have the combined presentation with very severe hyperactivity/impulsivity. I’ll jump over things, can’t sit still to save my life, and always have to be in motion somehow. Most research does not account for me.
" Historically, women have gotten the short end of the stick when it comes to medical research.
For decades, male investigators published scientific articles based only on male subjects, whether they were animals or humans. A male investigator would ask a scientific question of interest to him and answer it with male data. When researchers were asked to justify those decisions in the 1940s and 1950s, they blamed it on—you guessed it— women’s hormones, claiming that females were more difficult to study because of menses and therefore should be left out of the research equation entirely.
One result of this lopsided research protocol: a belief that males are the standard and females are the aberration. As a result, women have been underdiagnosed, undertreated, and even given the wrong treatment regimens entirely for diseases as diverse as COPD, autoimmune disorders and heart disease."
Source: https://www.northwell.edu/katz-institute-for-womens-health/articles/women-overlooked-in-medical-research
The book "Invisible Women: Data Bias in a World Designed for Men" is a fascinating look at how treating men as the default has all kinds of unexpected consequences. Good book.
There's a bitter joke with a true core that a significant part of medical research is only valid for students of a few universities, cause that's the only group they get tested on.
A female acquaintance (and comic writer) of mine had been trying to get treatment for Bipolar II. Unfortunately, according to her doctor, 'Women don't get manic episodes with Bipolar II. Since you have manic episodes that means you have Bipolar I'
There was a particular set of meds that would exactly treat her conditions but the doctor absolutely would not prescribe it- because "you don't have Bipolar II".
Eventually me and several friends workshopped with her on exactly what to say to the doctor. It essentially boiled down to: 'Will taking these meds harm or kill me? No? do they have any harmful side effects? No? I am asking you to put me on a two week trial for this medication. If you are correct, I will notice no change. If I am correct, it will address my symptoms.'
Miraculously, the doctor agreed to this little wager, and surprise surprise, guess who had a nice shiny new diagnosis for Bipolar II a couple weeks later?
So good to hear it worked out for her.
I had two acquaintances that where bipolar (in different moments) never diagnosed and even less treated, both took their lives. Such a stupid and fucked up world where those that should help (doctors) are utterly biased and narrow minded (most at least).
Yep, what’s even worse is when I read that hyperactivity in adults is usually limited to a restless internal feeling or a need to get up from your chair in important settings. I have both of those…but I also still run, jump and climb, all things that adults should definitely grow out of according to books and the DSM-5. I’m 21 and I’ll still jump over one of those parking lot barriers instead of walking around it, or jump down the last 4 stairs.
I failed at even being “properly” ADHD.
When you said the part about adults growing out of run/jump/climb, I assumed you were much older. 21 year olds are definitely doing those things, neurotypical or not! I’m 45 and do them all too :)
I'm 48 and late diagnosed AuDHD. I definitely have both but had conformity and masking punished into me. But if I'm alone in nature,or in my own home or yard I jump and climb and hop and try to grab that tree branch constantly or see if I can make it to that little square foot of dry space jutting out 2 feet from the pond edge. I swing down to the landing of the basement stairs because there are rails on both sides. I hop up on counters and climb furniture at home. We were supposed to stop that?
My husband says he sometimes thinks I'm setting intentional obstacles in the way of my neverending and beloved yardwork, just so I can hop off and over things.
Yeah ADHD gets weird too. Women tend to be more inattentive, men tend to be more hyperactive. So the little boy bouncing off the walls and being the class clown gets noticed, but the girl sitting in class spacing out all day is assumed to be quiet and a delight to have in class lol I didn't get diagnosed until I was 27 because I'm inattentive but not hyperactive.
I agree with you. In my opinion it's less about how males vs females actually present, but more about how society perceives biases in gender, the way we are socialized, and the personality/adaptability of the autistic individual. I know males who also were diagnosed late because they were more adaptable and hid their autistic traits as a survival skill, or were just perceived as feminine instead of autistic.
I was diagnosed with combined type ADHD at 37 and my nephew at 20. He'd been diagnosed when he was 4 with something vaguely autism spectrum but not sure. A general disability. Turned out he has severe inattentive ADHD, which nobody expected to see in a boy, so the glaringly obvious signs went unnoticed.
I was diagnosed at 35. I am a female. And once I was diagnosed, I felt like my entire life and myself just suddenly made sense to me. It was such a relief.
Girls who could do well academically but not fit in socially were particularly overlooked. The kind of harassment that we experienced was brushed aside as “social drama”. Grades were considered to be much more important than how a kid was doing socially. As long as their grades are good, the other stuff must not be too bad, right? (Spoiler: WRONG)
We were blamed for not fitting in. We could get good grades, obviously we were smart, so we must have just not have been trying hard enough to fit in. The idea that someone could be intelligent but lacking in some specific social skills wasn’t there. It’s kind of like how it was with dyslexia- you’re smart, obviously if you’re having trouble reading, you must be doing something wrong.
This was me and I’m a guy. I’m in my 30’s now.
I was in gifted programs til I couldn’t take the bullying anymore and left for a normal hs.
I was never diagnosed. I was assessed, but my mother to this day lies about it and denies it.
I’m definitely autistic. I’m just at a loss as to what to do about it. Like, it clearly impacts my work - I’m going back to school at a very high level, high stress uni - and I often need extensions on deadlines etc last minute cause I obsess over minutiae.
But my entire life has been one of shoddy half assed health care. I guess it’s just a generational thing? My parents are older boomers, they never took health seriously. My doctor was my uncle who beat my aunt and chain smoked in his office while seeing patients.
Now I’m grown and I can’t even get a new pcp cause my insurance sucks.
Sounds a lot like my childhood, also a guy. My grades were good so nothing else mattered. My parents only brought me to see a doctor if blood was shooting out of the top of my head like a water fountain (this happened) and still seemed more upset about the medical bill than my health. I didn't know I had ADHD until I was 25. I often wonder if I wouldn't have flunked college so hard had I known. I was socially behind and had severe depression by middle school. I was cutting myself just to be in control of the pain. They thought I just did it for attention. I'm in my 30's now, and after reading about it for many years I am almost certain that I am also autistic. Every single legit screening I've done has my score off the fucking charts. It's even on my dads side of the family but my parents just think it's from vaccines or something. They refuse to admit I could have it and get very defensive when I bring it up.
I used to pull my hair out one by one using my glasses.
I have so many scars from being clumsy. One time I needed stitches, my dad picked up my entire extended family, dropped my sisters off, picked up my godmother, and then and only then did I get to go to the hospital.
Like. Bro.
I knoooowww it was cause he wanted to finish his shopping and put the meat away. I know it.
Like, I’m fucking gushing blood over here. Do that shit later.
Priorities.
My mom’s the same way with the denial. Definitely his those results from me.
I know she has them cause I had to take a legit day long iq test and screening to get into the gifted school and their iq cut off was 130.
Touching on a tangentally related point you made, I hate the entire idea of being "smart" nullifying any and every mental disorder or neurodivergence. As if the only people dealing with psychological issues are either psychotically screaming in the street or are drooling, dead eyed morons.
GT was literally special ed for "smart" kids. Nobody in my life accepted I was bipolar until my mid 20's because I was "smart", so obviously I just didn't care, or wasn't trying hard enough to function.
>So the shy little girl who taught herself to read at the age of three, loves ponies and has them on her bedspread and backpack and lunchbox and in this book she's reading and is excited to show them to you, and has notably poor hand-eye coordination
Why you gotta call me out like that?
I was that little girl. It took me until *twenty-eight* to get a diagnosis. And that's pretty early, compared to a lot of women. It sucks, because we spend our lives feeling inferior to everyone else -- at least, more than normal -- with no explanation for why. Now, we finally have one.
I was that little girl. I also never realized until reading a book about autism in girls, for my daughter, not everyone has a voice in their heads explaining when they should make eye contact and when to look away... I'm 46. One of these days, I might get diagnosed, but right now I'm fighting too hard to get my 8 year old diagnosed so we can get treatment for her meltdowns to worry about me. I've got my coping skills already.
The first part describes me exactly. I was a little girl who taught herself to read (thanks to Richard Scarry books). I was diagnosed with ADHD age 22 and have suspected autism since last year. I have multiple family members who have ADHD and Autistic traits too but haven’t been diagnosed.
>So the shy little girl who taught herself to read at the age of three
What is learning to read at an early age supposed to be a symptom of? Genuine question.
For many people having autism and ADHD seems to ‘cancel’ symptoms out. I present more neurotypical because of this and have a different flavor of struggles as well. Like almost unwillingly acting chaotically with impulsivity which clashes with a deep need for routine and order. I can talk a lot in a social settjng yet hate change and don’t want to leave the house. My mind needs a special interest but I can’t focus long enough to have one.
And like, alcoholism and depression, they often go hand in hand. But "they didn't exist, when I was a kid" Said my grandfather who drank himself into an early grave and was called stutters, not because of a stutter but he was known for jumping conversations, repeating himself and having hyper focused interests. Like dude, your friends all joked that I'm just like you, I just got diagnosed.
i was diagnosed with ADD (now ADHD-PI) in 98, then Asperger’s (now ASD) in 2010. no one said anything lol
this isn’t an argument btw because you’re right! it is just a relevant anecdote, i’m sure it happened to other people too.
Additionally, the DSM-5 combined all the "Persistent Developmental Disorders" including Asperger's ~~and Rett's~~ into Autism Spectrum Disorder. Under DSM-4 I would have had an Asperger's disagnosis, but under DSM-5 I have level 1 ASD.
Kinda sad but at least it gets them help? I've read there was very little consistency in who got diagnosed with PDD-NOS and who got diagnosed with other categories like autism or Asperger's, partly because of stigma and partly because PDD-NOS was just such a vague diagnosis. I'm not really sure why I was diagnosed with it instead of Asperger's. My siblings were both just diagnosed with autism.
From the schools perspective, all that really matters is that they have a diagnosis because therapies and services are assigned based on specific identified needs, not the diagnosis itself. It's a nice bonus if it's correct though.
Edit: Getting a diagnosis is quite important because there are federal funds to help pay for service for students who have medical needs.
I think that's the one I got. Never really got an answer cause I'm not sure my parents actually remembered what it was. "Some sort of learning disability" is really all I knew.
Yup. You wanna see autistic old people, just ask uncle George about stamps. He can tell you every single thing about stamps. Or maybe cousin Tim who is super shy in crowds and really just has his own way and prefers to be alone doing model airplanes.
There are so many neurodivergent people over 50 who are just the weird uncle that works at the hardware store and organized the small pieces and also does their book keeping.
People were much more accepting of "neurodivergent" people before mass media (like movies) but not in the same way as is popular now. I'm 73, born and raised in Texas. When I was a boy, in the 1950s culture in the U.S. was vastly different than today. For one thing, casual racism, as well as other kinds of discrimination, was extremely common, but it had a different character than today.
It was more like most people in the mainstream expected very little of anyone with any sort of intellectual or emotional disability, especially in small towns. People with severe autism were often placed in institutions. People with high functioning degrees of autism were just considered to be "odd." I had a classmate who had survived polio and wore braces on his legs and sometimes walked with a forearm crutch. He played sandlot baseball with the rest of us, but with a "designated runner" (usually somebody's younger brother.) When he played defense, he always played right field. There was an unspoken rule (certainly never spoken to him) that nobody was to hit to right field, because we all knew that unless the ball was hit directly to him, he wasn't going to be able to field it. To hit to right field was considered to almost be cheating. Usually after a few innings he just said he was tired and we replaced him with another player who wasn't too athletic.
There was a deaf kid on our block. He had contracted measles as a baby. One of the kids had a cousin with cerebral palsy. And we had a kid that today would be considered autistic. He was in our elementary school until I was in fourth grade, and then he went to a special school for "disturbed" kids.
It was discrimination, but the discrimination of low expectations. The other kids just accepted that some people had disabilities. The words we used to describe them weren't meant as insults--things like "deaf and dumb," or "crippled" or "spastic" or "goosey." There weren't any other words, as far as we knew, to describe them. They were still right in there with the rest of us, and we just accommodated them as best we could. So Davey had polio. Big deal, he could still ride a bike. And Jimmy was deaf, we all knew it. But he still hung out with the rest of us. And Tim was kind of a space cadet. Sometimes kids are cruel to those that are different, and that was true about Tim. But nobody outside our group had better mess with him unless they wanted to fight us.
There were nearly thirty kids on my block in 1957. We ran kind of wild, but we took care of our own. Including the ones that were different.
Wow. Your comment takes me back to elementary school in the early 70s. It was still like that. We had many kids that we called "special," and they were always treated as part of the class, and we helped them with their school work , no big deal. One thing though, my sister was born with spina bifida, and she was incredibly intelligent. And of course they put her in the special ed class because of that, and back in that time she couldn't understand why they would put her in that class because she could see that the other kids couldn't work well, but she just breezed through everything because there was nothing wrong with her mind. It wasn't until Junior High that she was reassessed, and then it was realized that there was absolutely nothing wrong with her cognitive ability, and she was put into the general ed class . But that was the '60s and '70s. That's how things were done.
I'm 52 and grew up in Australia. The kids were brutal and anyone different was a target. We had a kid with prosthetic legs. Kids used to steal them. Any guy mildly effeminate was a target too.
Thanks for sharing these stories. It’s nice to hear about how people have taken care of others the best they knew how.
I love hearing stories about my great uncle who died in an accident when he was way too young. He lost his hearing due to meningitis, but he had a hilarious personality and used it for shenanigans. He lived with his sister and brother in law for a period of time and got up at 2 AM and decided to bake a cake - making the biggest racket known to man on purpose. When they woke up he acted completely innocent and said he didn’t know he was being loud because he couldn’t hear it (although he was definitely old enough when he lost his hearing to know he was being deafening).
Things were so bad that he and my grandpa went walking to go try to find work. When they would walk in the dark, he would put his hand on my grandpa’s throat and could figure out what he was saying through the vibrations. My grandpa missed him so much the rest of his life.
He was so beloved by everyone, especially his brothers, and his brother in law was his best friend. He died decades before I was born but I feel like I missed out on so much not having him in my life. He was never talked about as “disabled” or “different” - he was just who he was, and his deafness was an important trait because it impacted his life but it wasn’t ever characterized as negative, even though it obviously made his life harder.
I remember this old camp counselor around 1970 having a breakdown and crying. Some memories of war haunted this guy and us 9 or 10 year olds didn't know what to do. Some kids watched him cry and others went out to play. He was "shellshocked" was the term because nobody used PTSD then.
Another aging war veteran lived in my small hometown. Everyone called him Hermie (the hermit). Local legend was he survived a mustard gas attack. He lived by himself, never spoke with anyone and walked everywhere.
Back in the 60s or 70s there was always that weird kid. But no terms like ADHD, Aspergers or Autism. I really don't know much about any of these things, I'm just an old guy relaying my personal observations and experiences.
Had an uncle pass away recently. Lovely man, quiet, devoted to his family, I always felt loved and safe with him and his family. I learned at his funeral that he always drove a blue F150. He collected antique Coleman lamps. He had a room dedicated to model trains. He always had a dog because his mother said “a boy needs a dog.”
My son’s autism fits perfectly in my family the more I learn. As does my mother saying that he isn’t autistic, he’s just like us. 😆
😆 that’s what my mom said too about my ADHD.
“You can’t have it. If you have it, then the whole family has it!”
Well, turns out a large percentage of our family has it.
The adhd diagnosis was easier on my mom. She admits that the whole family probably has it, but we embrace it and do our best to work with it. My sister had a harder time with that one. Her daughters are grown and getting diagnosed and telling her that she has it. I agree with her and point to our mom. She still struggles to admit it…while singing a specific song when filling the sink for dishes because she’s overflowed the sink so many times after forgetting she left the water running.
I'm convinced that my grandpa was autistic. He just couldn't get diagnosed cause he was born in the 1940s. But he had a massive coin collection, a whole room full of books on WWII, and instead of reading me stories before bedtime, he'd show me his collection of atlases and point out all the cities and countries and borders (I always thought it was really fun, though). He was usually quiet and standoffish in social situations unless the conversation drifted to his favourite topics. Then he could go on forever. He was also a little awkward and said odd things sometimes that, in a younger man, would be seen as a lack of social calibration, but in older men just comes off as eccentricity. My brother is diagnosed autistic and everyone in the family remarks on how much he reminds them of our grandpa. I miss him a lot and often wonder how his life would have been if he'd have been able to get a diagnosis in his day.
My grandfather had books and BOOKS of coins and stamps and SO many model cars. Also extremely into chess had 10-15 mail games going at a time I remember. GEEZUS now that I think about it yeah he probably was too.
Until VERY recently, any sort of label was to be avoided at all costs because the outcomes were..not good.
So if you have a label, then people of a certain age will conclude that it must mean you have something seriously wrong with you.
> He can tell you every single thing about stamps. Or maybe cousin Tim who is super shy in crowds and really just has his own way and prefers to be alone doing model airplanes.
Isn't that just called... having hobbies and interests? I'm confused by this thread and am now afraid I have undiagnosed autistism just because I like to paint miniatures for board games lol.
It’s to do with the intensity of the interest. For autistic people, especially as children, the interest can be all-consuming. They may literally talk about nothing else for a long time unless chided by an adult. They will also often be experts at that topic and will not understand the social queue that the person they are talking to is not all that interested in it (or at least not beyond 15 minutes). As adults, autistic people may have learned to cover this up (masking) and the hobbies, from the outside, may present in a pretty typical way. But for me personally, if I could get away with it, I would talk about cats all day, every day. And never ever get tired of it.
Part of the reason behind that is that studies on autistic people often just... didn't include women and girls. Until relatively recently there wasn't a requirement to include all genders in studies, so there were huge blind spots in how some stuff affects women.
My god brother(is that a thing?) has severe autism. He's verbal but is basically a 6 year old dispete being mid 20s and needs round the clock care dispite being in his mid 20s now.
This is what many people saw as mild autism 40+ years ago. It's why aspergers (which doesn't exist now) was a seperate digonisos.
Today both are seen as being on the austic spectrum just at different points. This is why it seems more common, because now people who 40 years wouldn't of been diagnosed at all or even as a different disease are now diagnosed as simply autistic.
It used to be effectively 3 levels. 1) no autism, 2) aspergers, 3) autism. Now it's a fullass spectrum, so there's no need for Aspergers.
Also, Dr Asperger was a nazi cunt who only invented that diagnosis so he could find the "useful ones".
I am a therapist and I can tell you, most of the people I have seen who are diagnosed with something in the last 10 years wouldn't have been before - and sometimes that's a good thing, sometimes bad. It's bad when this diagnosis becomes their identity and crutch, even worse is if they use it to manipulate others... e.g. "I have been diagnosed with a, b, c, and d, and it's not fair that my partner doesn't do all my bidding while I sit on the couch, refuse to work and hit them. I just don't know what to do, it's triggering my a, b, and c and making d worse."
Yep, if you were verbal you were just "weird."
That was the 90s.
Now, something like 20% of young boys are diagnosed, and with early intervention, it can be addressed quite successfully.
Before, the weird kid was just “the weird kid.” Now we have a better understanding as to why, and it’s a lot of different stuff rather than just “weird,” so we can treat/accommodate/be more kind.
My mom loves to talk about her eccentric dad. How he had to have his "little rituals" and would always wear the exact same shoes, shirts, pants etc and fall apart when companies inevitably stopped making that item. How he had difficulty communicating emotions or connecting with people sometimes but was a brilliant chemist who spent hours obsessively examining an issue.
The rest of her family (including my mom) are all "eccentric" artists or scientists and I'm pretty sure most would be diagnosed as neurodivergent in some shape or form. But back then you were only diagnosed if you had a situation that really prevented you from being able to navigate school or a job. Everything else was just eccentric
That's exactly like my mum's dad, except she never thought any of the autistic stuff he did was unusual. He thought bonding with the grandchild could be achieved by beating the shit out of me at Scrabble.
Ha my grandfather tried by quizzing me on things like the physics of various household products like pressure cookers. To his dismay I had never used a pressure cooker and at 11 had no idea how to answer.
With my sister, she always knew she wanted to be an artist so his way of connecting was to ask her for a horse drawing every year so that he could track her progress as an artist. He was always very positive and complimentary but he did indeed keep a binder with all her yearly horse drawings until the day he died
I hope you've tried a pressure cooker since then, they are marvelous devices.
The horse request sounds amazingly scientific, being genuine and very supportive. Not sure why you said "but" after "positive and complimentary." I guess saying supportive things but not knowing anything specific about what she's done would be better.
Pretty much. A popular meme among Autistic folks goes, "Pluto was only discovered in 1930. Pretty sure it was there the whole time, tho'."
Autistic traits and individuals who have them have always been here -- and were previously described as just *weird* or *quirky* or *eccentric* or *awkward,* etc. -- but it wasn't until relatively recently that the field of psychology started identifying the consistent pattern or clustering of those traits that we now call Autism Spectrum Disorder (ASD) as of the DSM-5, and that understanding may (and likely will) evolve and develop further by the next DSM version.
Speaking of the "spectrum", that term is also often misunderstood. It isn't just a gradient from "less to more autistic". Think of it more like a color-wheel, where each color section represents a specific category of autistic traits, and any individual Autistic person may have varying combinations of those traits to varying degrees, [like this](https://www.instagram.com/p/CqixZBOOUm3/) or, with more description, [like this](https://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum).
It's like when being left-handed was accepted in school. There was an immediate rise in left-handedness. Something like 0.5% up to 10%. Those kids have always been there.
It's a remarkably common trend for various things throughout history. Not really the focus of the thread but I'm getting flashbacks to every time I have argued against people saying that being trans is a trend.
That and the things that make a neurodivergent person stand out from the crowd are more in number and intensity. There was a good thread about this with some good examples:
A couple centuries ago: The kid who talks to animals but doesn’t get along with other people and gets overwhelmed in crowds… he’s a shepherd on the edge of town. And he has an important role and he’s good at it. That’s it.
A couple generations ago: Your grandpa that only wears one kind of white t-shirt and has had the same breakfast for 30+ years while taking care of his farm and if you bring up trains he will talk your ear off? He’s just a farmer who likes trains and shredded wheat. That’s it.
Put those people in a suburban or urban living situation and subject them to modern high school…. ASD diagnosis. No question.
>and subject them to modern high school…. ASD diagnosis
This is a big one that doesn't get mentioned enough. Not only is there more understanding, but also way more school psychologists, counselors, special ed staff, and other adults, policies, and norms at schools that lead to way more diagnoses of all sorts.
The changeling, a child who was replaced by the fey and could be identified via certain signs?
The description usually matches autistic traits/signs. I don't know where my kid learned the words million, billion, and trillion, or knew how to write them out before age 4, but it happened.
https://en.m.wikipedia.org/wiki/Changeling#:~:text=A%20common%20way%20that%20a,within%20Irish%20and%20Scottish%20legend.
> given to screaming and biting. It may be of less than usual intelligence but may equally well be identifiable because of its more-than-childlike wisdom and cunning.
We've been cautioned not to lean hard on the strengths but instead focus on weaknesses. Which is why I stopped showing algebra in kindergarten.
Institutions weren’t a thing til the 19th century. There were hospitals for the severely disabled in the 9th, but only in the Muslim world. People cared for their own. And they adapted. Humans are really cool critters sometimes.
Really like your 2 examples of 'the old days'. But those are examples of situations that worked out for those involved. I wince, thinking about all the folks who didn't find their role in life, & whose lives were not so great.
I work in a power plant. The amount of undiagnosed autistics in their 50/60/70’s is insane. One way to tell is they don’t retire cause all they have is their job. They’re great workers, mechanics, tinkerers, problem solvers of the most tedious sort. You give them almost no direction, its like “you keep this thing running”, and they just do somehow. They’re very safe workers too, they consciously are aware of all the rules and best practices, and think through every task before starting. All they talk about is what they’re working on though, and the shuffle around staring at the floor. They always have to show someone the problem before removing or fixing it, no comment about it, just “come here, you see that, yah its split and shouldn’t be, split from heat, I’ll replace it and add insulation.” Great, you do that!
Like if a man is 60 years old, lives alone and works on cars as a hobby, never dated, never married, well they’re probably autistic. “They were always kinda shy, they just are so interested in their hobbies, real mans man, doesn’t get women, just wants to swing their tools”. Farmers, mechanics, niche trades (controllers, electronics, nerdier less social trades).
Its a type for sure, used to be a personality type, now its diagnosed to give them help if they require it. This is needed too, cause there is also the older autistic man who stops showering randomly and doesn’t understand why they’re getting called to HR. Since they’re undiagnosed it doesn’t go well for them, they seem like they had a mental breakdown, but when asked say there is no change on their life, no added stress, and its all very disconnecting to the behaviour. It causes a lot of confusion, and if someone brings up “they may be autistic” then it becomes a question of “should they be working here then?”. Diagnosing it causes a stigma as well.
This is a very helpful post. I (72m) have known many people that fit these descriptions. It's sad to me to think how long they lived their lives misunderstood, even if they did find a niche to fit into. Not only misunderstood by family & community, but by themselves, too. I wish them peace in their confusing world.
I think today’s world has a greater focus on connecting and socializing, mainly due to the ease of it. I think this has exacerbated the issue. Education has also become broader, making specialization or finding a niche more difficult.
This is what everyone who shits on the increase in diagnosis misses - autistic people exist even if they aren’t diagnosed and it can be absolutely life-changing to finally understand yourself. It took me until 37yo and I can finally start working WITH my brain instead of against it and trying to fit into the neurotypical mould that I’ll never fit in.
Some neurotypical people really take for granted what it’s like to live in a world built for you, so they don’t realise the impact of not understanding why you can’t just do stuff like everyone else for no apparent reason.
Science marched on, when I was in highschool back around the dawn of the 1990's, we had the dawn of the idea that teens and young children can and should see a therapist and be treated for things like depression. My psych teacher in High School said that when he was in college the smart thinking at the time was that depression only happened in adults. Flash forward two decades and that was revised.
These kinds of things have always been around. This isn’t something I’ve researched much so take it with a grain of salt. There’s myths of the fey stealing children and replacing them with a changeling. A child that’s been replaced roughly exhibits autistic behaviors, and this occurs at an age where autism typically becomes apparent.
In general, a lot of mental health conditions gets explained with the supernatural.
> A child that’s been replaced roughly exhibits autistic behaviors, and this occurs at an age where autism typically becomes apparent.
Absolutely.
https://en.m.wikipedia.org/wiki/Changeling#:~:text=A%20common%20way%20that%20a,within%20Irish%20and%20Scottish%20legend.
> given to screaming and biting. It may be of less than usual intelligence but may equally well be identifiable because of its more-than-childlike wisdom and cunning.
I noticed this page said they sometimes steal away adults, particularly women who were new mothers. I wonder if this is some kind of explanation for post partum depression.
Remember your “weird” grandpa that used to obsess about stamp collecting and trains and ate the same oatmeal for breakfast every day for 50 years?
Yep.
asperger’s as a diagnostic term left the dsm-5 in 2013. you may have been diagnosed with it prior to then and it’s cool if you still want to refer to yourself as that, but if you were evaluated today you would probably be diagnosed with autism instead. virtually just a label change
I was evaluated about 6 months ago and the official diagnosis is "high functioning autism" but when going over the report, the psychologist said I was, quote - "classic Asperger's."
They may have been educated before the change, and still use old terms. It's part of why many psychologists can't diagnose adult autism, or will miss it - we mask too well, and they aren't trained to catch high maskers.
Accommodations, knowing for sure you are diagnosed, being able to put it on medical records for medical procedures so hospital/clinic staff can adjust accordingly, etc.
Masking well drains us. That description = me. I got it for graduate school accommodations. A lot of schools don't take ADHD as seriously as autism. It's ridiculous.
Otherwise, not really, though I do think insurance should be covering it for adults so we can get an accurate number & to allow people to get accommodations with doctors note.
It's a tradeoff. Diagnosis always carries with it the risk of stigma from (for example) medical professionals, but having documentation can make things like getting accommodation at work easier.
For some people, it's easier to have the accommodation. For others, especially if you have other stuff going on, (medical or mental) you might prioritize not running the risk of being taken less seriously. Autism can sometimes turn into a catch-all diagnosis, similarly to the way that people joke about their broken leg being diagnosed as fat.
The DSM doesn't have a "high functioning Autism" diagnosis. Fwiw, the healthcare professionals who do the most research and treat those with ASD know this can be quite invalidating to those within the spectrum. There are "levels" in the official DSM-V. And, Asperger's is *technically* still part of the ICD coding, especially for insurance. To note, this is all in the US.
https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-criteria.shtml
If you think about the spectrum as a circle, more than a line, then you can begin to understand that no one is more or less Autistic, it just means their symptoms require more or less support. I know that some might say "high functioning" is synonymous, why be so literal... well, a lot of us Autists struggle with black and white thinking, so being literal, is quite literally, one of the most common symptoms. Language can be extremely helpful when treating those within the Autism Spectrum.
My understanding is also that Asperger is also the name of the Nazi doctor who formally described it. So besides a better understanding (i.e. Asperger's is basically part of the autism spectrum), there's also a push to move away from Nazi assocation.
Correct, or also put as high functioning autism or autism level 1 (not that functioning and levels are all that useful or correct)
I got my autism papers 2,5 years ago and im lvl 1 , 10 years ago it would have been aspergers
Autism as a diagnosis wasn't widely accepted until 1980 or so. A number of things we now consider part of the autistic spectrum were labeled as other conditions until quote recently. Aspergers, now considered a relatively high functioning part of the autistic spectrum, didn't leave the DSM until 2013 for example.
Before that they were labeled as something else. It's not new, just categorizing and treating it is.
Modern mental health, as a full science with its own verbiage, official diagnoses, pharmacological tie ins, etc.... is only about a century old and is still developing rapidly.
The paper that began distinguishing autism from schizophrenia was publish in 1943. It's still relatively new as a studied diagnosis so yes, it seems like the number of people diagnosed has increased because the understanding of the condition is still growing.
And the public at large in the US largely learned about it from a popular TV show St Elsewhere.
I’m in my 60s and when I was young in the 1970s, people with severe autism to the point of being non communicative were often referred to as “deaf and dumb”. I remember hearing the term used a lot.
Much of the basis for early autism research came out of nazi Germany when they were exterminating the intellectually disabled. The doctor played up the math/engineering autistic trope to show that a subset of these people would be useful and should not be killed. Autistic people without those skills were left out, because the doctor couldn't justify it.
And to be clear, he had no problem killing the other type of autistic people so don't think too highly of him.
So this focus on a very narrow subset of autistic people by a nazi became so ingrained in the academic discourse that to this day it's still how most people think of autistic people.
> Aspergers, now considered a relatively high functioning part of the autistic spectrum, didn't leave the DSM until 2013 for example.
Asperger syndrome, together with Rett syndrome, Heller syndrome, and PDD-NOS all fell in the same group as Kanner syndrome (Classical autism) in the DSM-IV, specifically ICD-9–CM group 299 (Pervasive Developmental Disorders), with Kanner syndrome (Classical autism) being the group leader (having subcode 00), and PDD-NOS being the catch-all for everything that fell in the group, but was not otherwise specified.
In the DSM 5, they essentially renamed ICD-9–CM group 299 to Autism Spectrum Disorder and merged everything in ICD-9–CM group 299 together under a single name.
ICD-9–CM group 299 was renumbered in the ICD-10–CM to F84.0
Consider ADHD as another example of something that has had an incredible increase in diagnosis. I am one of those "new" cases.
I am a high functioning 43 year old man with a wife, 2 kids, my own business, home, cars and all the other bits. And yet I was recently diagnosed with inattentive type ADHD and started treatment. To say that taking the stimulant medication made a huge difference would be a massive understatement.
As a kid, my grades swung between A+ and a C, depending on the subject and the teacher. If I engaged with the subject and the teacher I fucking aced it. If it was something I wasn't drawn to I checked out. This is despite desperately not wanting to check out. When I got to university this became even more pronounced. I wanted to do the work and the study, I just couldn't.
For people who don't have adhd I found it impossible to explain why I would just not do the things that I needed to do, that I wanted to do. Until it was framed to me that what I feel when trying to do these tasks would be the same as a normal brain going out on a Friday night, getting hammered, coming home at 2pm and then their alarm going off at 6am to go for a 10km run. That is how hard doing tasks that aren't in my current interest focus are to do.
Now I take dexamphetamine, which is a stimulant and part of what is in Adderal (don't get that here). Now I can just do the things that I want and need to do, without them either being a passion or earth shatteringly critical. Doing my job is so much easier that it's a fucking joke. I can remember to do things, I don't forget where my keys are constantly.
Back in the 80s and 90s there was zero chance of me being assessed, let alone diagnosed, because I didn't have the behaviour issues and I got good enough grades to get by. But I had it. So clearly looking back I had it. And the thing I struggle with the most, and have to be very careful about not dwelling on, is how many opportunities I missed, how many fuck ups I made, and how many friends I lost because of undiagnosed ADHD.
There are just as many people who got through life not being diagnosed as on the autism spectrum.
As a 42 yr old woman with two kids and a very functioning career, this is so relatable. I highly suspect I have ADHD but have been afraid to go further with testing/diagnosis because I don't want to be seen as one of those "oh now everyone thinks they're have it" people. It's hard to convince myself this is more than just a series of personality "quirks" or that everyone isn't like this. Your post is pushing me toward talking to someone about it because that was exactly my experience as a student. It kept me from pursuing more challenging higher education. I feared I would lose interest and then the money I invested.
I still struggle with feeling like a fraud or seeming like I’m jumping on the bandwagon, and I was diagnosed with ADHD as a female child in the early 90s (not very common). Even knowing I had it my whole life, I still struggled massively and I masked/pretended I didn’t have it for so long. I finally got to the place a few years ago where I needed to figure out how to support myself so I started looking at adhd coping mechanisms.
If you feel nervous that you’re a band Waggoner, just remember that you don’t have to tell anybody about testing/diagnosis. It can just be for yourself and finding your own coping mechanism and potentially medication.
I had been toying with the idea of getting tested for at least 3 years. But I had exactly the same mental thoughts you are having. The fraud, the just another one on the train, an excuse. And then on the flip side there was the other thought, the one that is what if I don't have adhd, and all those things I would forget, the bills I wouldnt pay, the shitty time management and districtedness, what if that was actually just because I was shit.
Then came the moment where I said I really need to actually see someone. I had dropped my daughter at school, and first thing the next morning she was off on school camp. On the way home from school I needed to do 2 things. 1, buy some lollies she can smuggle into camp. 2, go into the chemist and get a label printed for her medication. I just drove straight home. Walk in, wife says "did you get the lollies and the medication?". "no. fuck" off I go. I get to the Chemist and get the label. Stand in front of the chemist "I know there was something else I needed. I can't remember" drive home. Wife "lollies?". Fuck. Off I go again.
I made the doctors appointment that day.
I had documented everything in advance of seeing my GP, and then when I got there I just blah blah blah'd at her. She gave me a referral to a psychiatrist.
I then got home, and called the center she had recommended. 18 month wait time to see a psychiatrist and $5k out of pocket. Honestly I just hung up the phone and cried. I was completely defeated and getting to the stage of talking to a doctor was hard enough. Fortunately my wife is amazing and helped me find other options.
Where I live you can have a telehealth psychiatrist provide instructions to your GP and your GP can then prescribe the medication if they are willing. My GP was, and I went down that path. Wait time was 2 weeks to see a Psychiatrist. I scored 1 point short of the maximum score for inattentive ADHD.
I took the first tablet at 8am on a Friday morning, a day I had taken off because we had friends coming over for a dinner party. We had a fucking disaster start to the day with me smashing the glass kitchen aid bowl, which my wife needed. So about 30 minutes after taking the pill I'm in the car to a local store to buy a replacement, and I have 3 other things I had to buy. Out of habit I am repeating those 3 ingredients in my head over and over so I don't forget.
And then while driving, the drug kicked in. It was like a fog lifted, that I was no longer fighting a sludge to keep these things in my head. I just knew them. Honestly it was the most at peace my brain had ever been, short of when I was off my face on morphine after a motorcycle accident. I drove to the store, I bought the replacement bowl, I walked into the super market, I bought the 3 things I needed. And then I drove home.
I know how fucking dumb that sounds when typed out. But that was a huge thing for me to achieve.
> As a kid, my grades swung between A+ and a C, depending on the subject and the teacher. If I engaged with the subject and the teacher I fucking aced it. If it was something I wasn't drawn to I checked out. This is despite desperately not wanting to check out. When I got to university this became even more pronounced. I wanted to do the work and the study, I just couldn't.
>
> For people who don't have adhd I found it impossible to explain why I would just not do the things that I needed to do, that I wanted to do. Until it was framed to me that what I feel when trying to do these tasks would be the same as a normal brain going out on a Friday night, getting hammered, coming home at 2pm and then their alarm going off at 6am to go for a 10km run. That is how hard doing tasks that aren't in my current interest focus are to do.
>
> Now I take dexamphetamine, which is a stimulant and part of what is in Adderal (don't get that here). Now I can just do the things that I want and need to do, without them either being a passion or earth shatteringly critical. Doing my job is so much easier that it's a fucking joke. I can remember to do things, I don't forget where my keys are constantly.
This is torture to read, because I relate to all of it completely.... except after getting diagnosed in my 30s, I've tried every major ADHD med there is, at low-to-high-doses, under all the optimal lifestyle/health conditions they insist on, and none of them made even a 1% difference to me.
On any dose of anything - Adderall, Strattera, Concerta, Dexadrine, Vyvanse, Guanfacine - I'm still *completely*, debilitatingly beholden to thinking *only* about whatever random subject I'm naturally drawn to that day/week/month, same as it's always been for me, no matter how badly I want to tear my train of thought away from it and do the work or studying I desperately need to do to maintain an adult life.
I've been through two ADHD-specializing psychiatrists about this, and they've been painfully dismissive and impatient of my experience - it honestly feels like they're so used to steady praise from all the patients who have the classic *"it's like night and day!"* experience as soon as they get medicated, that they don't want to deal with a seemingly-hopeless case at all. They just glower and tell me the same thing I heard from every disappointed teacher, mentor and parent I've ever had - *"Well, you just need to FORCE yourself to pay attention and REMEMBER not to get distracted and PROMISE yourself to stay focused"* etc etc etc, when I tell them *I can't,* I'm trying my absolute hardest but *I still can't*, even on meds. They respond like I'm sitting there saying *"meds help but they're not magic enough, and I want them to magically do everything for me"*, when I'm making it as clear as possible that I'm saying *"meds aren't helping in any way, shape or form"*
Sorry for the onslaught here, I just really don't have any other outlet for this left. Therapists won't listen, and even actual ADHD subreddit never approves my posts saying all of the same.
An important aspect of understanding of neurodivergent behaviour is that it is maladaptive to the given environment. One can easily imagine how autistic trades can be advantageous is certain environments. For example, autism in a farmer living in a small, mono-culture community regulated by codified order, another words one of Mechanical Solidarity, would be well adapted and can be very positive. Thus, up until recently in human history, most of us simply didn’t live in environments that saw these behaviours as maladaptive.
Secondly, we have just begun to seriously seek and diagnose autism and its spectrum. The better we get at it, the higher the numbers will go until we reach the true population numbers. Then the rates will probably plateau given that it is most likely a genetic and not an environmental condition.
My daughter was recently diagnosed with autism by a psychologist, but just barely. Meaning that in her professional opinion, my (high functioning) daughter was right on the edge of the spectrum. She went ahead and gave her the diagnosis so that we could know what to do going forward and get her any necessary accommodations.
So I would chalk it up to better understanding, better diagnosis, and just more acceptance. The typical behaviors and signs have always been there; we just didn’t have a name for it. And high functioning people on the spectrum learn to “mask” well, and to fit in the best they can, though it’s a constant struggle and pretty exhausting.
For females in particular the diagnosis can be much harder. Lacking/not understanding social skills are a common sign of ASD but females are better at copying social cues. They may not understand what/why they’re doing it but they’ll mimic what they see.
Yeah also girls in general from a young age have a higher expectation to learn social skills and conform to gender expectations, so it makes sense that since autistic women are socialized differently they are able to mask more. Even neurotypical women make to some extent, though to a lesser extent of course
Autistic female, can confirm. It also didn’t help I was a “gifted” child and therefore considered too smart to be autistic when my parents were pursuing a diagnosis.
That highlights another reason for the increase in diagnoses - capable / gifted intellect is no longer seen as a negative indicator. It just means that cognitive development isn’t delayed, or may be atypical in another way eg; hyperfixation and/or increased rote memory (both ASD signs)
It’s because of that reasoning that I only recently got a diagnosis, but man I wish I had gotten diagnosed when I was younger because my teenage years were a struggle and having that understanding of myself could’ve helped considerably.
Suicide rate for women on the spectrum is like 20x neurotypical. "Only" 9x typical for guys. But I agree, being a woman on the spectrum is arguably much rougher.
Yep. I'm in the same boat as your daughter. If I were to get diagnosed today under the current DSM5 definition, I'd just barely make the cutoff for a diagnosis of ASD. I was diagnosed with Asperger's under DSM4 and, now that I'm older and have gone through a decent amount of therapy, my symptoms are relatively minor. If I were to go in to get diagnosed today, chances are high that I wouldn't make the cutoff for Autism Spectrum Disorder due to how well I've gotten at masking.
Thankfully, as long as the person doing the assessment is suitably trained to do adult autism assessments, they will tailor their questions to get behind the mask. For example, I'm capable of doing pretty much anything on my own, but if I can't accommodate my autistic traits then I get very uncomfortable and masking takes up a lot of conscious effort leading to cognitive exhaustion. Since I have autistic traits that require support (and masking is a type of support) I got diagnosed with level 1 ASD.
Great answers here! I wanted to add something else - I work on autism research and something I've noticed is that parents many times are in denial of their kids having ASD despite overwhelming evidence that they do. They will say their kids are developing properly at home and just "nervous during the test," or some other excuse like that. I think as it has become more understood and socially acceptable to have children with special needs, the number of diagnoses has risen (and will continue to rise) since it's easier for parents and family members come to terms with it and get their kids the opportunity to get diagnosed and helped from professionals.
It's this. It has been suggested to me in the past that I might be on the spectrum. I never pursued a formal diagnoses. However, my new psychiatrist has asked me to do the social inventory and have a family member fill it out.
My father straight up refused. And when I was talking to my Mom about it, she was saying stuff like, "You had a lot of friends as a child!" And I pointed out, "No I didn't. Remember I was the only girl who wasn't invited to So and so's sleepover?" "Well that's just because so and so was jealous of you."
She made excuses like that my entire life. I was never the problem, she would just tell me other girls were "jealous" of me. The truth is, I was very blunt and came across as incredibly rude and uncaring. It took me a long time to figure out on my own how to mask. And I can still only do it sometimes.
But my brother and his family came down, and he was like, "Oh yeah, I've thought you were autistic for years, I just didn't want to say anything. But yeah, I'll fill out the form for you."
My Mom refused to fill out the form honestly. It's like if she admitted anything was different about me, it would reflect badly upon her as a parent that she didn't notice, or get me any help. So the form is like...attacking her identity as a good mother. It's frustrating.
People having children later and later and advances in pre-mature birth care are definitely factors as well:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2724463/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7452728/
It's only recently been identified as a condition. Even 30 years ago I was diagnosed as "Asperger's Syndrome" rather than autistic, but nowadays it would be part of the autistic spectrum.
It's not a rise in autistic people. It's a rise in people being identified as autistic.
I’m high functioning autistic. 40 years ago when I was a kid, autism was something people only knew from Rain Man, where it happened to people who could barely function. I was just labeled as “gifted”, even though I’d struggled mightily (and to some extent still do) with social situations.
So yeah, we’ve learned more about it since then.
I’m pretty confident that I’d fall on the spectrum if I got a diagnosis. I was also labeled “gifted” because I was a big reader early, but I too suffered mightily with social situations. I was more content going off and playing pretend by myself on the playground than hanging around other kids. I could never fit in no matter how much I tried.
I was one of those weird but bright kids who had difficulty making friends and depended on the social skills of one specific friend.
I had obsessive interests. Rigid thinking. Giant meltdowns at home. Could only wear certain types of fabric.
With diagnosis as an adult, it doesn't make a difference. If anything the label has given some odd colleagues the ammo to try bully me. Which is a weird thing to do in adulthood.
But realistically, I have a wider social network and more finetuned social skills than most other people that aren't on the spectrum now. I think because at some point people get lazy on their social skills and stuck in their ways.
I've had to learn to be adaptable.
3 things, primarily:
1 - They expanded the diagnostic criteria. You used to need to be *very* heavily impacted by autism in order to be diagnosed. Like, basically non-verbal and never going to live independently. Now you can be much less impacted and still qualify.
2 - There's much more awareness, so a much higher percentage of those impacted are being diagnosed.
3 - There's talk of "tech-induced autism" in education and psychiatry, where kids are lacking social skills because screen time is replacing socialization.
Our understanding of autism has changed.
It used to be you were either "autistic," and screamed and had breakdowns in class, or you had "Asperger's," and were a little eccentric and hyper logical (obviously this is oversimplified but you get the idea).
Over the past 30-40 years we've realized that the two are actually one and the same, and that there are varying degrees, hence the more modern term "autism spectrum." Due to the broadened definition of autism, more people who fall on the "high functioning," side have been getting diagnosed and getting the help they need.
ok i try to go full ELI5 with this:
A long time ago, some people where just seen as weird, retarded or idiots.
Now we know why they behave different than most people and we know how to treat them better.
Those are the same people, we just know better now.
So, the seeming explosion of autism diagnoses in recent decades is a pretty complex issue. It's not so much that there's been a massive increase in autistic folks; rather, we've gotten way better at spotting it. Back in the day, autism was this tiny, rigid box that few people fit into. Now? We understand it's a whole spectrum, and our diagnostic net is much wider. Plus, there's way more awareness these days. Parents, teachers, doctors, therapists —we're all more clued in to the signs. Toss in earlier diagnosis, reduced stigma, and better access to services, and you've got a recipe for higher numbers. Some researchers are poking around at environmental factors, but there's no smoking gun there yet. Genetics play a big role too, so when autistic individuals have kids, it's more likely that some of those little ones might also be on the spectrum. So yeah, while we can't rule out a true increase, most of us in the field see this "autism boom" as mainly a reflection of our evolving understanding and improved recognition. We're not necessarily making more autistic people; we're just finally seeing the ones who were always there.
> Plus, there's way more awareness these days. Parents, teachers, doctors, therapists —we're all more clued in to the signs.
To underscore this point, I know multiple people who have been diagnosed with autism as adults only after their kid was diagnosed and they realized they were very similar to their kids at that age.
20-40 years ago the awareness wasn't there for this stuff so they just flew under the radar.
TLDR: It is not due primarily to increased diagnostic methods or differences in methods. It is a true increase.
From Neuropsychologist Catherine Desoto:
Before addressing the question, it is crucial to state what is not in dispute: Changes in diagnostic practice have occurred. It is assumed this has played a role in the autism prevalence rate. Children with mild autism who would not have been diagnosed with autism decades ago, would be diagnosed today. However – the question is whether there has been an actual increase in the number of children who exhibit the behaviors we diagnose as autism (marked communication difficulties or lack of language, repetitive behaviors, tantrums in the face of routine changes, low IQ on standard IQ tests).
This question has been addressed. Atlaadottir and colleagues (2007) reported the change in autism rate for children born in Denmark during the 1990’s, (the sample size was 669,995). Atladottir used standardized case ascertainment and standardized diagnostic procedures to document an increase in both Autism Spectrum Disorders (ASD) and Childhood Autism in Denmark. Neither diagnostic changes, nor children moving in or out of the area were an issue because the entire country was monitored, and the diagnostic process did not change across the years. There was an increase. Decreases in age of diagnosis was considered and accounted for some – but not all -- of the increase. Importantly, the increase was most pronounced when the stricter diagnostic definition of Childhood Autism was used.[1] Autism prevalence across time in California has been analyzed as a function of changes in diagnostic practice. Results have shown that there have been changes in diagnostic behavior—these changes have been quantified and appear to account for a 67% increase in the number of diagnoses (Hertz-Picciotto and Delwiche, 2009 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4113600/ ), however as noted in their study, there had been a nearly 700% increase in prevalence. As a whole, this suggests that diagnostic changes and typical age of diagnosis have occurred, but do not come close to fully accounting for the observed change in prevalence.
Another earlier analysis conducted within Minnesota found the increase in ASD to be as high as a 14-fold increase (Gurney et al., 2003). The study by Gurney and colleagues attempted to dissect competing influences on the increase in Minnesota. The data rule out diagnostic substitution as the cause of the increase.
The issue is confusing, even when one tries to follow the scientific literature. This is partly because there are some studies that reportedly do not show an increase. Methods matter, so bear with me. For example, the often-cited Latif and Williams study (2007) report the lead author’s diagnoses of ASD across time (1988 to 2004) in a small area of England and conclude that classic autism has not increased. However, the study may have been limited in that determination of the precise diagnoses (ASD; “classic Kanners” autism; “other” autism), did not employ any of the guidelines or standardized tools recommended for diagnosing and classifying autism, but relied on clinical judgment. It is important to note, when deciding on a question of such importance as children’s health, any differences in methodology that could explain discrepant results. And this part of the result matters: The decrease in “classic Kanner’s” autism reported by Latif and Williams occurred concurrently with their report of a more than four-fold increase in “other forms” of childhood Autism, and a more than doubling of ASD cases. Thus, along with the small sample size, the reported lack of increase in classic autism is based on the judgment for classification of approximately two children per year to other forms of autism– occurring in the context of a dramatic increase in total autism cases across the years of study.[2] Total autism cases were documented as increasing. It is OK to compare and judge the methods when results are discrepant. It has been asserted that experts deny a true increase[3], but no evidence for this is provided. Expert opinion matters because experts are more likely to read and analyze differences in methodology for themselves and/or may have direct experience. One way to determine what experts think it to actually poll experts who have training in clinical research methodology.
To my knowledge, there is only one empirical investigation of experts’ views on the matter, and I am the lead author (DeSoto and Hitlan, 2013 https://file.scirp.org/pdf/OJPsych_2013042414375485.pdf ). It was hypothesized that actual clinical experts would not dismiss the increase in autism as artifact caused by increased awareness. The design was a stratified random sample with participants selected from large, medium and small cities across the United States and various regions. The participating psychologists and doctors were asked, “In your opinion, which is most accurate about the changing rate of autism?” and given four choices. Seventy-two percent reported either the true rate may have or definitely has occurred. Participants were also asked to respond to the specific question of whether the increase in autism was fully explainable by changes in how autism is diagnosed. The results indicate that the majority of professionals do not believe that the increase in reported autism is fully explainable by changes in diagnostic practice. Twenty-eight percent of professionals surveyed thought that diagnostic changes were accounting for all of the increase in diagnoses, while 60% thought this did not fully explain the observed increase.
The Centers for Disease Control (CDC), which has been somewhat hesitant to openly state a true increase has occurred, has nonetheless documented a continuing increase. The most recent report (CDC, 2018) documents an overall 15% increase compared to 2012 levels. The CDC uses excellent methodology, monitors the rate of 8 year olds (to avoid effects related to earlier of later age of diagnosis), and uses standardized identification. They have a monitoring network in place that is designed to document the actual number of children with ASD in large, defined regions, and is even able to offer analysis of the effects of minor variations in diagnostic practice. “Recent changes in the clinical definition of autism did not have much impact on the percentage of school-aged children identified as having ASD by the ADDM Network,” (CDC 2018 Executive Summary). It is important to note that using standardized definitions, the percentage of children with autism varies widely, as well as the amount of increase. For example, in New Jersey, the rate is one in 34 children, with a 20% increase over the prior estimate, and 28% of children on the spectrum had IQ scores below 70. In Arkansas, as another example, only 1 in 77 children meet the diagnostic criteria, and prevalence has not changed much in the past decade. This may suggest to some (like me) that some places actually have a higher incidence of a specific phenotype within the spectrum, one that continues to increase and is possibly more severe.
At any rate: Yes, the true prevalence is increasing, and it is not (all) due to diagnostic changes.
CDC Community Report On Autism Executive Summary, 2018. Downloaded May 20, 2018. https://www.cdc.gov/ncbddd/autism/addm-community-report/executive-summary.html Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289, 49-55. Gurney, J. G., Fritz, M. S., Ness, K. L., Sievers, P., Newschaffer, C. J., & Shapiro, E. G. (2003). Analysis of prevalanece trends of autism spectrum disorder in Minnesota. Archives of Pediatrics and Adolescent Medicine, 157, 622-627. Atladottir, H., Schendel, D., Dalsgaard, S., Thomsen, P., & Thorsen, P. (2007). Time trends in reported diagnoses of childhood neuropsychiatric disorders: a Danish cohort study. Archives of Pediatrics and Adolescent Medicine, 161, 193-199. Latif, A.H. A & Williams, W.R. (2007). Diagnostic Trends in autistic spectrum disorder in South Wales valleys. Autism, 11 (6), 479-87. DeSoto, M.C.& Hitlan, R.T. (2010). Sorting out the spinning of autism: Heavy metals and the question of incidence. Acta Neurobiologica Experimentalis, 70 (2). 165-76. DeSoto, M.C. (2009). Ockham's Razor and Autism: The case for developmental neurotoxins contributing to a disease of neurodevelopment. Neurotoxicology, 30 (3). 331-337. DeSoto, M.C. & Hitlan, R.T. (2013). Professional opinion on the question of changes in autism incidence. Open Journal of Psychiatry, 3 (2A), 61-67. https://file.scirp.org/pdf/OJPsych_2013042414375485.pdf [1] Note that early deniers of an increase said that this type of methodology is the only type that can be relied upon to answer the question of increase ( e.g. Fombonne 2003b, p. 375), with very large studies being preferred to access actual incidence increases (Fombonne 2003b, p. 376): this large study counts ASD and autism separately, the same way, across time in a circumscribed location. [2] Kanner and Eisenberg’s 1956 diagnostic criteria for diagnosing autism was used throughout the study, but in 1993 the criteria used for ASD and Aspergers were updated to the new editions of ICD and DSM. It is not stated why the DSM was not used for classic Autism. [3] Example of assertion without supporting evidence: “Though the concept of an ‘autism epidemic’ has become a notion of faith among parent campaigners, most authorities in the field believe that the increased prevalence of autism can be readily explained by widening diagnostic categories and increased professional and public awareness” (p. 297, Fitzpatrick, 2007)
Everyone saying it was underdiagnosed is only giving you half of the answer. There's indeed evidence that the incidence of autism has increased more than can be explained through underdiagnosis alone. Scientists are actually looking at environmental factors, like decreased childhood socialization and microplastics, to explain the difference between the increase observed and what we would have expected from underdiagnosis. While autism has a genetic component, there's evidence that it can be triggered or worsened by environmental factors in the womb or shortly after; no, not vaccines specifically, but the idea itself isn't bunk like people believe.
[For the inevitable doubters, here's one such study.](https://pubmed.ncbi.nlm.nih.gov/35134716/) It's not quackery or pseudoscience; it's just not popular to talk about because people have built autism into some kind of intrinsic identity that's "not a disorder" and "just another way to exist." I say this as someone who has been formally diagnosed himself: it's a nice narrative to believe that an increase in acceptance is just leading to people who would have previously been labeled "weird" being diagnosed, but that's not exactly what's happening--it's only a small part of it.
It was called something else. Tuberculosis is an ancient disease, but you won't find any mention of it prior to the 1880s because it was called consumption. And was common enough that it was considered a personality trait.
There's terms like Idiot Savant that started in the 1880s as well. Mental Retardation from around 1901. Imbecile entered English around 1550, but the meaning which transferred to English from French hasn't switched meaning since Latin. Cretin from 1775.
In the 1980s terms like Mental Retardation were on their way out, but I remember being called "Slow" and being called an Idiot Savant.
There is a study which seems to suggest that prenatal exposure to air pollution can be linked to higher risk of autism in children.
study link: [https://ehp.niehs.nih.gov/doi/10.1289/EHP9509](https://ehp.niehs.nih.gov/doi/10.1289/EHP9509)
It used to be impossible for someone to be diagnosed with autism if they were not *significantly* intellectually delayed, if not disabled. This isn't part of the modern understanding of the condition.
Another (minor) aspect is that autism and ADHD couldn’t be diagnosed concurrently until 2013. You either had one or the other, but not both. Many people got diagnosed with ADHD as a kid but never knew they were autistic as well.
On top of that, autism (and ADHD, tangentally) often present differently in males and females, and up until fairly recently they only used the typical male presentation when screening and thought it mostly occured in males. So the shy little girl who taught herself to read at the age of three, loves ponies and has them on her bedspread and backpack and lunchbox and in this book she's reading and is excited to show them to you, and has notably poor hand-eye coordination could be easily overlooked while her rambunctious male classmate who doesn't talk about anything but dinosaurs, rocks in his chair when overstimulated and doesn't make eye contact with anyone would have been diagnosed early.
To be fair, there’s also a pretty decent amount of debate over how much presentation actually differs between males and females, and how much of it is due to differences in how girls and boys are raised/perceived. Sometimes signs that raise a few red flags in boys might be totally ignored in girls, and so they tend to be diagnosed later (I was diagnosed at 20, which apparently isn’t super uncommon among autistic women). That’s not to say that there’s no differences in the ways autism (and possibly ADHD, though I’m admittedly much less informed on that) presents itself, just wanted to add to your point!
My youngest, male, was diagnosed at five and received fantastic early intervention therapies. My oldest, female, was her early 20s when she was diagnosed. We didn’t see the signs until after we received more education and experience raising her younger brother. She’s doing well overall, but I always wonder if early intervention could have made things easier for her.
I'm a woman diagnosed at 64 (a few weeks ago). I often wonder if there aren't some advantages to forcing myself to do the harder things, like making eye contact, varying my intonation, asking people questions about themselves, etc. I was even in retail commission sales in my 20s, which took a tremendous effort at warming up to the job in any new store I worked at. I hear other autistic women complaining about how their early-diagnosed brothers get so much more help and accommodation; they, too, wonder which had the more advantageous upbringing experience. That said, I very much feel that autistic people who ask for accommodation should get them if it helps them do better or feel less uncomfortable in school or at work. Anyone with any disability ought to be made more comfortable whenever possible. There's nothing wrong with giving everyone a chance to succeed. American social culture is trending downward where caring for the happiness and wellness of other people is concerned. Unequivicolly, that is a bad thing.
When I was originally diagnosed with 'aspergers' prior to it being folded into the general autism diagnosis I had spent a considerable amount of effort training myself into recognizing body language and accurately simulating emotional responses based on context clues- things that I couldn't just inherently grok like normal people. These days I'm exceptionally good at passing for neurotypical with the exception that I talk too much about things I like. But it took years of training. Something else I trained: jokes. I used to be unable to improv jokes. I could learn a joke and repeat it, but that was it. So after I got my diagnosis, I made a special effort to train myself to pattern match context clues against a big box full of 'things that are funny'. The resulting 'Joke Engine' produces funny results 90% of the time, which is a huge boon. The downside is that only 60-70% of what it produces are things I can actually *say* to people, with the remainder being highly inappropriate. Still funny tho.
>Still funny tho. Lol, I'm getting the best situations played out in my head here. Like: "So anyway, blah blah" *Snicker* "What?" "Oh. Nothing. Nazi joke."
Welcome to the Internet, where there's an audience for every joke, guaranteed to actually have some members who find awful shit funny instead of just self affirming. For example, give Last Podcast On The Left a shot if off-color humor about serial killers and cryptids is your thing.
64, wow. That’s it though, isn’t it? There just wasn’t much in the way of awareness, education, therapy, or accommodations back then to cover the entirety of the spectrum. My daughter was born in ‘96. She struggled at school, both socially and academically, but still was under the radar enough that she didn’t receive any accommodations. As parents we didn’t even know what that term meant at the time. We eventually pulled her from public school at 16 and homeschooled her. She got her GED, went to college and earned an AAS degree, and now works as a medical assistant in a women’s clinic that she loves. She has little social life though, but she’s OK with that for now. I’ve encouraged her to maybe find a therapist that she could work with, but she tells me she is happy where she right now in life, so that is what I have to go with and be grateful she’s found a place where she feels comfortable and fulfilled.
It sucks, doesn’t it? I’m about as old as your daughter. I got very little support despite my diagnosis. Some extra time on exams, which was a little helpful at least. But no one ever connected the dots between me failing PE and my autism. I struggled socially, was even bullied because of my diagnosis. I didn’t start struggling academically until university, and I eventually dropped out. But I’m happy with where my life is right now. I have a nice job and a bunch of friends.
> There just wasn’t much in the way of awareness, education, therapy, or accommodations back then to cover the entirety of the spectrum And for a lot of other things. For instance, taking a hammer to someone's left hand so they'd be forced to switch to their right for a while in the hope they'd start using their right hand more generally for the rest of their life.
My left hand was tied to the desk in kindergarten in 86 to encourage me not to write with it. I already knew how to write, so I had to relearn. I actually had pretty neat writing before then, with my left hand. Now, with my right? Not so much. I still use my left for some things though. Like eating, using my camera, shaving my legs, a computer mouse, stuff like that. But I’m right handed for baseball, writing, etc. looking back, I assume it was a lack of left handed resources- no left handed desks, scissors, etc.
(i dont mean this to place any "blame" or your child self) my grandmothers left hand was tied down, so instead of using her right hand she held her pencil in her mouth until they let her use her left hand
My grandmother took it upon herself to slap my left had with a ruler anytime I tried to do anything with it. Ya, nothing worse than a relative that believes they are doing a good thing for you.
It's not abuse if they think they're helping you. They were doing the best they could. /s
Agreed. I've had to struggle to learn to hold conversations with people and force myself to make eye contact but I'm kinda glad I've been able to overcome a lot of these things solely because I didn't exactly know why I was having issues but knew I wanted to change them. I wonder, if I had been diagnosed at a young age, would I have thought "oh well, nothing I can do about it" and just accepted my brain was different instead of tackling it head on and solving it? It sucks to feel shame and frustration and awkwardness but it's also why I've improved for the better. I'm happier with the coping skills I've had to learn on my own. At my age I don't want or need accommodations but it would have been nice to have that when I was younger. However, I also don't think I would have grown into the person I am now if I had been coddled. I just don't like the idea that we're helpless creatures that need protection to survive. I've overcome the difficulties and function just fine maintaining a career and a home without accommodations. That being said I would 100% respect the boundaries and accommodations someone asked for, but I don't seek that personally.
And you just perfectly hit the nail on the head when it comes to the paradoxical nature of social protections. We can so easily steal agency and self reliance from young people while parading around with the best of intentions. I dont have an answer for the problem but with a situation like this I think the most important thing is just being able to see the dangers. Another reminder that we need to see people as individuals, not just as representatives of a subgroup.
America has had some very weird rules when it came to not "enabling" someone with a disability too much in the past. They saw any kind of accommodation that was different from the norm as a crutch that someone might get over reliant on. Some of that attitude still persists today, unfortunately, and often by people who feel like if they themselves didn't get certain avenues of help, no one else should either. One of the weirdest ones was they wouldn't teach people Braille unless they were completely blind. If they were severely vision impaired but had even a little bit of sight, Teachers and the like worried that partially sighted students might "cheat" and look at the letters instead of learning them solely by feel. Which was a weird thing to worry about because those Braille dots are difficult enough for people with 20/20 vision to spot easily. If they have a tough time perceiving printed letters on a page, they're going to have an even tougher time telling what each Braille letter is by sight.
I hate the "crutch" logic, as someone who uses my prescribed ADHD medication and isn't ashamed of it. If any of these people had actually had to use crutches in their lives they'd know that crutches are extremely fucking important for people who need them. It annoys me more when it comes from within the community - like oh good for you you choose not to use medication, that doesn't mean I don't need it because surprise suprise, people have different levels of severity and need support in different ways. It's the same with "it's not a disability, it's just different" like no there are indeed things I can't do or need support to do and telling people we're just different makes it sound like we don't need support. It's like saying "I just swim a bit differently" versus "I can't swim". Bro I need the floaties or I will drown.
Yes, I'm 62f, never been diagnosed, did well in Universities. I just figured it was something wrong with me that I rarely dated, could not keep a relationship, wondered why everyone around me seemed to be getting married, having kids, having lives, and I was always on my own. Part of it was circumstances. I'll have my mortgage paid off in seven years. I rarely leave my house anymore. There is just no reason to.
Me again. And I was a very cute lady into my 50s. Healthy, ran, biked, hiked, etc.
Diagnosed as a male at 5, now 27. I am high functioning, probably a lot of it due to early intervention, but it did make it so I am very reliant on other people adapting to me and me having a very hard time adapting to others. Also as a product of the time, I was taught to constantly be aware of myself, mask a lot, behave well, try to understand everything and read through the lines, which is just so exhausting but subconsciously it's my default state by now. Makes it so there is little energy to improve other things, or adapt to my wife instead of my wife adapting to me constantly. So there are benefits, but also drawbacks as with everything.
I think early intervention makes things easier regardless of the condition. My 5-year-old son has been diagnosed with autism and has also been diagnosed with Ehlers Danlos syndrome. It took me until I was 19 years old to get the Ehlers Danlos diagnosis. Knowing what I know now about my own EDS makes it a lot easier for me to intervene at a young age and get him the supports and care that he needs to achieve his best possible outcomes.
I have ADHD, every book or website will tell you that women typically have the inattentive presentation. I have the combined presentation with very severe hyperactivity/impulsivity. I’ll jump over things, can’t sit still to save my life, and always have to be in motion somehow. Most research does not account for me.
" Historically, women have gotten the short end of the stick when it comes to medical research. For decades, male investigators published scientific articles based only on male subjects, whether they were animals or humans. A male investigator would ask a scientific question of interest to him and answer it with male data. When researchers were asked to justify those decisions in the 1940s and 1950s, they blamed it on—you guessed it— women’s hormones, claiming that females were more difficult to study because of menses and therefore should be left out of the research equation entirely. One result of this lopsided research protocol: a belief that males are the standard and females are the aberration. As a result, women have been underdiagnosed, undertreated, and even given the wrong treatment regimens entirely for diseases as diverse as COPD, autoimmune disorders and heart disease." Source: https://www.northwell.edu/katz-institute-for-womens-health/articles/women-overlooked-in-medical-research
The book "Invisible Women: Data Bias in a World Designed for Men" is a fascinating look at how treating men as the default has all kinds of unexpected consequences. Good book.
It is amazing book, I will be honest and say that I haven’t realised how much of the world is designed for men!
As the daughter of a nurse, man am I familiar with that. It sucks.
True for minorities too. All old research has essentially been done for white males.
There's a bitter joke with a true core that a significant part of medical research is only valid for students of a few universities, cause that's the only group they get tested on.
A female acquaintance (and comic writer) of mine had been trying to get treatment for Bipolar II. Unfortunately, according to her doctor, 'Women don't get manic episodes with Bipolar II. Since you have manic episodes that means you have Bipolar I' There was a particular set of meds that would exactly treat her conditions but the doctor absolutely would not prescribe it- because "you don't have Bipolar II". Eventually me and several friends workshopped with her on exactly what to say to the doctor. It essentially boiled down to: 'Will taking these meds harm or kill me? No? do they have any harmful side effects? No? I am asking you to put me on a two week trial for this medication. If you are correct, I will notice no change. If I am correct, it will address my symptoms.' Miraculously, the doctor agreed to this little wager, and surprise surprise, guess who had a nice shiny new diagnosis for Bipolar II a couple weeks later?
So good to hear it worked out for her. I had two acquaintances that where bipolar (in different moments) never diagnosed and even less treated, both took their lives. Such a stupid and fucked up world where those that should help (doctors) are utterly biased and narrow minded (most at least).
I’ve had adhd since I was a young child - always been the hyperactive person who can’t sit still- still am!!!!
Yep, what’s even worse is when I read that hyperactivity in adults is usually limited to a restless internal feeling or a need to get up from your chair in important settings. I have both of those…but I also still run, jump and climb, all things that adults should definitely grow out of according to books and the DSM-5. I’m 21 and I’ll still jump over one of those parking lot barriers instead of walking around it, or jump down the last 4 stairs. I failed at even being “properly” ADHD.
When you said the part about adults growing out of run/jump/climb, I assumed you were much older. 21 year olds are definitely doing those things, neurotypical or not! I’m 45 and do them all too :)
I'm 48 and late diagnosed AuDHD. I definitely have both but had conformity and masking punished into me. But if I'm alone in nature,or in my own home or yard I jump and climb and hop and try to grab that tree branch constantly or see if I can make it to that little square foot of dry space jutting out 2 feet from the pond edge. I swing down to the landing of the basement stairs because there are rails on both sides. I hop up on counters and climb furniture at home. We were supposed to stop that? My husband says he sometimes thinks I'm setting intentional obstacles in the way of my neverending and beloved yardwork, just so I can hop off and over things.
Yeah ADHD gets weird too. Women tend to be more inattentive, men tend to be more hyperactive. So the little boy bouncing off the walls and being the class clown gets noticed, but the girl sitting in class spacing out all day is assumed to be quiet and a delight to have in class lol I didn't get diagnosed until I was 27 because I'm inattentive but not hyperactive.
I agree with you. In my opinion it's less about how males vs females actually present, but more about how society perceives biases in gender, the way we are socialized, and the personality/adaptability of the autistic individual. I know males who also were diagnosed late because they were more adaptable and hid their autistic traits as a survival skill, or were just perceived as feminine instead of autistic.
I was diagnosed with combined type ADHD at 37 and my nephew at 20. He'd been diagnosed when he was 4 with something vaguely autism spectrum but not sure. A general disability. Turned out he has severe inattentive ADHD, which nobody expected to see in a boy, so the glaringly obvious signs went unnoticed.
I was diagnosed at 35. I am a female. And once I was diagnosed, I felt like my entire life and myself just suddenly made sense to me. It was such a relief.
Just fucking tag me next time, Christ
Girls who could do well academically but not fit in socially were particularly overlooked. The kind of harassment that we experienced was brushed aside as “social drama”. Grades were considered to be much more important than how a kid was doing socially. As long as their grades are good, the other stuff must not be too bad, right? (Spoiler: WRONG) We were blamed for not fitting in. We could get good grades, obviously we were smart, so we must have just not have been trying hard enough to fit in. The idea that someone could be intelligent but lacking in some specific social skills wasn’t there. It’s kind of like how it was with dyslexia- you’re smart, obviously if you’re having trouble reading, you must be doing something wrong.
This was me and I’m a guy. I’m in my 30’s now. I was in gifted programs til I couldn’t take the bullying anymore and left for a normal hs. I was never diagnosed. I was assessed, but my mother to this day lies about it and denies it. I’m definitely autistic. I’m just at a loss as to what to do about it. Like, it clearly impacts my work - I’m going back to school at a very high level, high stress uni - and I often need extensions on deadlines etc last minute cause I obsess over minutiae. But my entire life has been one of shoddy half assed health care. I guess it’s just a generational thing? My parents are older boomers, they never took health seriously. My doctor was my uncle who beat my aunt and chain smoked in his office while seeing patients. Now I’m grown and I can’t even get a new pcp cause my insurance sucks.
Sounds a lot like my childhood, also a guy. My grades were good so nothing else mattered. My parents only brought me to see a doctor if blood was shooting out of the top of my head like a water fountain (this happened) and still seemed more upset about the medical bill than my health. I didn't know I had ADHD until I was 25. I often wonder if I wouldn't have flunked college so hard had I known. I was socially behind and had severe depression by middle school. I was cutting myself just to be in control of the pain. They thought I just did it for attention. I'm in my 30's now, and after reading about it for many years I am almost certain that I am also autistic. Every single legit screening I've done has my score off the fucking charts. It's even on my dads side of the family but my parents just think it's from vaccines or something. They refuse to admit I could have it and get very defensive when I bring it up.
I used to pull my hair out one by one using my glasses. I have so many scars from being clumsy. One time I needed stitches, my dad picked up my entire extended family, dropped my sisters off, picked up my godmother, and then and only then did I get to go to the hospital. Like. Bro. I knoooowww it was cause he wanted to finish his shopping and put the meat away. I know it. Like, I’m fucking gushing blood over here. Do that shit later. Priorities. My mom’s the same way with the denial. Definitely his those results from me. I know she has them cause I had to take a legit day long iq test and screening to get into the gifted school and their iq cut off was 130.
Touching on a tangentally related point you made, I hate the entire idea of being "smart" nullifying any and every mental disorder or neurodivergence. As if the only people dealing with psychological issues are either psychotically screaming in the street or are drooling, dead eyed morons. GT was literally special ed for "smart" kids. Nobody in my life accepted I was bipolar until my mid 20's because I was "smart", so obviously I just didn't care, or wasn't trying hard enough to function.
>So the shy little girl who taught herself to read at the age of three, loves ponies and has them on her bedspread and backpack and lunchbox and in this book she's reading and is excited to show them to you, and has notably poor hand-eye coordination Why you gotta call me out like that?
I was that little girl. It took me until *twenty-eight* to get a diagnosis. And that's pretty early, compared to a lot of women. It sucks, because we spend our lives feeling inferior to everyone else -- at least, more than normal -- with no explanation for why. Now, we finally have one.
I was that little girl. I also never realized until reading a book about autism in girls, for my daughter, not everyone has a voice in their heads explaining when they should make eye contact and when to look away... I'm 46. One of these days, I might get diagnosed, but right now I'm fighting too hard to get my 8 year old diagnosed so we can get treatment for her meltdowns to worry about me. I've got my coping skills already.
The first part describes me exactly. I was a little girl who taught herself to read (thanks to Richard Scarry books). I was diagnosed with ADHD age 22 and have suspected autism since last year. I have multiple family members who have ADHD and Autistic traits too but haven’t been diagnosed.
You just described me as a little girl....
>So the shy little girl who taught herself to read at the age of three What is learning to read at an early age supposed to be a symptom of? Genuine question.
For many people having autism and ADHD seems to ‘cancel’ symptoms out. I present more neurotypical because of this and have a different flavor of struggles as well. Like almost unwillingly acting chaotically with impulsivity which clashes with a deep need for routine and order. I can talk a lot in a social settjng yet hate change and don’t want to leave the house. My mind needs a special interest but I can’t focus long enough to have one.
And like, alcoholism and depression, they often go hand in hand. But "they didn't exist, when I was a kid" Said my grandfather who drank himself into an early grave and was called stutters, not because of a stutter but he was known for jumping conversations, repeating himself and having hyper focused interests. Like dude, your friends all joked that I'm just like you, I just got diagnosed.
i was diagnosed with ADD (now ADHD-PI) in 98, then Asperger’s (now ASD) in 2010. no one said anything lol this isn’t an argument btw because you’re right! it is just a relevant anecdote, i’m sure it happened to other people too.
Additionally, the DSM-5 combined all the "Persistent Developmental Disorders" including Asperger's ~~and Rett's~~ into Autism Spectrum Disorder. Under DSM-4 I would have had an Asperger's disagnosis, but under DSM-5 I have level 1 ASD.
I was "pervasive developmental disorder- not otherwise specified". Glad they changed it, 'cause that's just a mouthful.
That one still gets used in schools if the parents get that deer in the headlights look when they hear the word autism.
Kinda sad but at least it gets them help? I've read there was very little consistency in who got diagnosed with PDD-NOS and who got diagnosed with other categories like autism or Asperger's, partly because of stigma and partly because PDD-NOS was just such a vague diagnosis. I'm not really sure why I was diagnosed with it instead of Asperger's. My siblings were both just diagnosed with autism.
From the schools perspective, all that really matters is that they have a diagnosis because therapies and services are assigned based on specific identified needs, not the diagnosis itself. It's a nice bonus if it's correct though. Edit: Getting a diagnosis is quite important because there are federal funds to help pay for service for students who have medical needs.
I think that's the one I got. Never really got an answer cause I'm not sure my parents actually remembered what it was. "Some sort of learning disability" is really all I knew.
Rett is still a separate diagnosis
Rett Syndrome is separate from autism. It is, by itself, not an ASD.
Yup. You wanna see autistic old people, just ask uncle George about stamps. He can tell you every single thing about stamps. Or maybe cousin Tim who is super shy in crowds and really just has his own way and prefers to be alone doing model airplanes. There are so many neurodivergent people over 50 who are just the weird uncle that works at the hardware store and organized the small pieces and also does their book keeping.
Exactly. Before PTSD was widely accepted they were just the crazy dude who lived by themself.
People were much more accepting of "neurodivergent" people before mass media (like movies) but not in the same way as is popular now. I'm 73, born and raised in Texas. When I was a boy, in the 1950s culture in the U.S. was vastly different than today. For one thing, casual racism, as well as other kinds of discrimination, was extremely common, but it had a different character than today. It was more like most people in the mainstream expected very little of anyone with any sort of intellectual or emotional disability, especially in small towns. People with severe autism were often placed in institutions. People with high functioning degrees of autism were just considered to be "odd." I had a classmate who had survived polio and wore braces on his legs and sometimes walked with a forearm crutch. He played sandlot baseball with the rest of us, but with a "designated runner" (usually somebody's younger brother.) When he played defense, he always played right field. There was an unspoken rule (certainly never spoken to him) that nobody was to hit to right field, because we all knew that unless the ball was hit directly to him, he wasn't going to be able to field it. To hit to right field was considered to almost be cheating. Usually after a few innings he just said he was tired and we replaced him with another player who wasn't too athletic. There was a deaf kid on our block. He had contracted measles as a baby. One of the kids had a cousin with cerebral palsy. And we had a kid that today would be considered autistic. He was in our elementary school until I was in fourth grade, and then he went to a special school for "disturbed" kids. It was discrimination, but the discrimination of low expectations. The other kids just accepted that some people had disabilities. The words we used to describe them weren't meant as insults--things like "deaf and dumb," or "crippled" or "spastic" or "goosey." There weren't any other words, as far as we knew, to describe them. They were still right in there with the rest of us, and we just accommodated them as best we could. So Davey had polio. Big deal, he could still ride a bike. And Jimmy was deaf, we all knew it. But he still hung out with the rest of us. And Tim was kind of a space cadet. Sometimes kids are cruel to those that are different, and that was true about Tim. But nobody outside our group had better mess with him unless they wanted to fight us. There were nearly thirty kids on my block in 1957. We ran kind of wild, but we took care of our own. Including the ones that were different.
Wow. Your comment takes me back to elementary school in the early 70s. It was still like that. We had many kids that we called "special," and they were always treated as part of the class, and we helped them with their school work , no big deal. One thing though, my sister was born with spina bifida, and she was incredibly intelligent. And of course they put her in the special ed class because of that, and back in that time she couldn't understand why they would put her in that class because she could see that the other kids couldn't work well, but she just breezed through everything because there was nothing wrong with her mind. It wasn't until Junior High that she was reassessed, and then it was realized that there was absolutely nothing wrong with her cognitive ability, and she was put into the general ed class . But that was the '60s and '70s. That's how things were done.
I'm 52 and grew up in Australia. The kids were brutal and anyone different was a target. We had a kid with prosthetic legs. Kids used to steal them. Any guy mildly effeminate was a target too.
To be fair, Australians are still brutal
Thanks for sharing these stories. It’s nice to hear about how people have taken care of others the best they knew how. I love hearing stories about my great uncle who died in an accident when he was way too young. He lost his hearing due to meningitis, but he had a hilarious personality and used it for shenanigans. He lived with his sister and brother in law for a period of time and got up at 2 AM and decided to bake a cake - making the biggest racket known to man on purpose. When they woke up he acted completely innocent and said he didn’t know he was being loud because he couldn’t hear it (although he was definitely old enough when he lost his hearing to know he was being deafening). Things were so bad that he and my grandpa went walking to go try to find work. When they would walk in the dark, he would put his hand on my grandpa’s throat and could figure out what he was saying through the vibrations. My grandpa missed him so much the rest of his life. He was so beloved by everyone, especially his brothers, and his brother in law was his best friend. He died decades before I was born but I feel like I missed out on so much not having him in my life. He was never talked about as “disabled” or “different” - he was just who he was, and his deafness was an important trait because it impacted his life but it wasn’t ever characterized as negative, even though it obviously made his life harder.
Really interesting comment, I enjoyed reading it - thank you.
I'm a just few years younger than you. Thank you for putting what I was feeling into words.
Loved reading this. Reminded me of my dad’s childhood in the 50’s in queens ny. Pretty similar to the movie the sandlot
I enjoyed your comment, I felt like I was there.
I remember this old camp counselor around 1970 having a breakdown and crying. Some memories of war haunted this guy and us 9 or 10 year olds didn't know what to do. Some kids watched him cry and others went out to play. He was "shellshocked" was the term because nobody used PTSD then. Another aging war veteran lived in my small hometown. Everyone called him Hermie (the hermit). Local legend was he survived a mustard gas attack. He lived by himself, never spoke with anyone and walked everywhere. Back in the 60s or 70s there was always that weird kid. But no terms like ADHD, Aspergers or Autism. I really don't know much about any of these things, I'm just an old guy relaying my personal observations and experiences.
"hermit"
Had an uncle pass away recently. Lovely man, quiet, devoted to his family, I always felt loved and safe with him and his family. I learned at his funeral that he always drove a blue F150. He collected antique Coleman lamps. He had a room dedicated to model trains. He always had a dog because his mother said “a boy needs a dog.” My son’s autism fits perfectly in my family the more I learn. As does my mother saying that he isn’t autistic, he’s just like us. 😆
😆 that’s what my mom said too about my ADHD. “You can’t have it. If you have it, then the whole family has it!” Well, turns out a large percentage of our family has it.
The adhd diagnosis was easier on my mom. She admits that the whole family probably has it, but we embrace it and do our best to work with it. My sister had a harder time with that one. Her daughters are grown and getting diagnosed and telling her that she has it. I agree with her and point to our mom. She still struggles to admit it…while singing a specific song when filling the sink for dishes because she’s overflowed the sink so many times after forgetting she left the water running.
Oh my heart 😭🧡 I am hardcore in my feels in these comments
I'm convinced that my grandpa was autistic. He just couldn't get diagnosed cause he was born in the 1940s. But he had a massive coin collection, a whole room full of books on WWII, and instead of reading me stories before bedtime, he'd show me his collection of atlases and point out all the cities and countries and borders (I always thought it was really fun, though). He was usually quiet and standoffish in social situations unless the conversation drifted to his favourite topics. Then he could go on forever. He was also a little awkward and said odd things sometimes that, in a younger man, would be seen as a lack of social calibration, but in older men just comes off as eccentricity. My brother is diagnosed autistic and everyone in the family remarks on how much he reminds them of our grandpa. I miss him a lot and often wonder how his life would have been if he'd have been able to get a diagnosis in his day.
My grandfather had books and BOOKS of coins and stamps and SO many model cars. Also extremely into chess had 10-15 mail games going at a time I remember. GEEZUS now that I think about it yeah he probably was too.
[удалено]
I see you've met my parents.
Until VERY recently, any sort of label was to be avoided at all costs because the outcomes were..not good. So if you have a label, then people of a certain age will conclude that it must mean you have something seriously wrong with you.
As an adult I have several friends who are clearly on the spectrum but not diagnosed as children because of the era we grew up in.
> He can tell you every single thing about stamps. Or maybe cousin Tim who is super shy in crowds and really just has his own way and prefers to be alone doing model airplanes. Isn't that just called... having hobbies and interests? I'm confused by this thread and am now afraid I have undiagnosed autistism just because I like to paint miniatures for board games lol.
It’s to do with the intensity of the interest. For autistic people, especially as children, the interest can be all-consuming. They may literally talk about nothing else for a long time unless chided by an adult. They will also often be experts at that topic and will not understand the social queue that the person they are talking to is not all that interested in it (or at least not beyond 15 minutes). As adults, autistic people may have learned to cover this up (masking) and the hobbies, from the outside, may present in a pretty typical way. But for me personally, if I could get away with it, I would talk about cats all day, every day. And never ever get tired of it.
I want to add to this that we have gotten much better at recognizing signs of high functioning autism in females in the last 10-15 years
Part of the reason behind that is that studies on autistic people often just... didn't include women and girls. Until relatively recently there wasn't a requirement to include all genders in studies, so there were huge blind spots in how some stuff affects women.
My god brother(is that a thing?) has severe autism. He's verbal but is basically a 6 year old dispete being mid 20s and needs round the clock care dispite being in his mid 20s now. This is what many people saw as mild autism 40+ years ago. It's why aspergers (which doesn't exist now) was a seperate digonisos. Today both are seen as being on the austic spectrum just at different points. This is why it seems more common, because now people who 40 years wouldn't of been diagnosed at all or even as a different disease are now diagnosed as simply autistic.
Wait Asperger’s isn’t a diagnosis anymore? This is news to me
It used to be effectively 3 levels. 1) no autism, 2) aspergers, 3) autism. Now it's a fullass spectrum, so there's no need for Aspergers. Also, Dr Asperger was a nazi cunt who only invented that diagnosis so he could find the "useful ones".
I am a therapist and I can tell you, most of the people I have seen who are diagnosed with something in the last 10 years wouldn't have been before - and sometimes that's a good thing, sometimes bad. It's bad when this diagnosis becomes their identity and crutch, even worse is if they use it to manipulate others... e.g. "I have been diagnosed with a, b, c, and d, and it's not fair that my partner doesn't do all my bidding while I sit on the couch, refuse to work and hit them. I just don't know what to do, it's triggering my a, b, and c and making d worse."
Yep, if you were verbal you were just "weird." That was the 90s. Now, something like 20% of young boys are diagnosed, and with early intervention, it can be addressed quite successfully.
Before, the weird kid was just “the weird kid.” Now we have a better understanding as to why, and it’s a lot of different stuff rather than just “weird,” so we can treat/accommodate/be more kind.
My mom loves to talk about her eccentric dad. How he had to have his "little rituals" and would always wear the exact same shoes, shirts, pants etc and fall apart when companies inevitably stopped making that item. How he had difficulty communicating emotions or connecting with people sometimes but was a brilliant chemist who spent hours obsessively examining an issue. The rest of her family (including my mom) are all "eccentric" artists or scientists and I'm pretty sure most would be diagnosed as neurodivergent in some shape or form. But back then you were only diagnosed if you had a situation that really prevented you from being able to navigate school or a job. Everything else was just eccentric
That's exactly like my mum's dad, except she never thought any of the autistic stuff he did was unusual. He thought bonding with the grandchild could be achieved by beating the shit out of me at Scrabble.
> He thought bonding with the grandchild could be achieved by beating the shit out of me at Scrabble. boy am i thankful for those last two words
Boy, that deescalated quickly
You listen here you little S^1 H^4 I^1 T^1
Ha my grandfather tried by quizzing me on things like the physics of various household products like pressure cookers. To his dismay I had never used a pressure cooker and at 11 had no idea how to answer. With my sister, she always knew she wanted to be an artist so his way of connecting was to ask her for a horse drawing every year so that he could track her progress as an artist. He was always very positive and complimentary but he did indeed keep a binder with all her yearly horse drawings until the day he died
I hope you've tried a pressure cooker since then, they are marvelous devices. The horse request sounds amazingly scientific, being genuine and very supportive. Not sure why you said "but" after "positive and complimentary." I guess saying supportive things but not knowing anything specific about what she's done would be better.
right, in the past we observed but had no understanding (hence "weird kid")?
Pretty much. A popular meme among Autistic folks goes, "Pluto was only discovered in 1930. Pretty sure it was there the whole time, tho'." Autistic traits and individuals who have them have always been here -- and were previously described as just *weird* or *quirky* or *eccentric* or *awkward,* etc. -- but it wasn't until relatively recently that the field of psychology started identifying the consistent pattern or clustering of those traits that we now call Autism Spectrum Disorder (ASD) as of the DSM-5, and that understanding may (and likely will) evolve and develop further by the next DSM version. Speaking of the "spectrum", that term is also often misunderstood. It isn't just a gradient from "less to more autistic". Think of it more like a color-wheel, where each color section represents a specific category of autistic traits, and any individual Autistic person may have varying combinations of those traits to varying degrees, [like this](https://www.instagram.com/p/CqixZBOOUm3/) or, with more description, [like this](https://theoraah.tumblr.com/post/142300214156/understanding-the-spectrum).
It's like when being left-handed was accepted in school. There was an immediate rise in left-handedness. Something like 0.5% up to 10%. Those kids have always been there.
It's a remarkably common trend for various things throughout history. Not really the focus of the thread but I'm getting flashbacks to every time I have argued against people saying that being trans is a trend.
And now it's not even a country!
That and the things that make a neurodivergent person stand out from the crowd are more in number and intensity. There was a good thread about this with some good examples: A couple centuries ago: The kid who talks to animals but doesn’t get along with other people and gets overwhelmed in crowds… he’s a shepherd on the edge of town. And he has an important role and he’s good at it. That’s it. A couple generations ago: Your grandpa that only wears one kind of white t-shirt and has had the same breakfast for 30+ years while taking care of his farm and if you bring up trains he will talk your ear off? He’s just a farmer who likes trains and shredded wheat. That’s it. Put those people in a suburban or urban living situation and subject them to modern high school…. ASD diagnosis. No question.
>and subject them to modern high school…. ASD diagnosis This is a big one that doesn't get mentioned enough. Not only is there more understanding, but also way more school psychologists, counselors, special ed staff, and other adults, policies, and norms at schools that lead to way more diagnoses of all sorts.
There is also a real point to be made about how traumatic life can be for the undiagnosed, _especially_ in school.
That grandpa is my dad. He’s 74.
As him if he's a coal, diesel, or electric train kind of guy. And report back.
It was helicopters, and birds.
Coal, diesel, or electric birds?
Definitely electric, birds aren’t real.
That’s the positive interpretation. Autistic people were simply institutionalized without a real diagnosis for ages
The changeling, a child who was replaced by the fey and could be identified via certain signs? The description usually matches autistic traits/signs. I don't know where my kid learned the words million, billion, and trillion, or knew how to write them out before age 4, but it happened. https://en.m.wikipedia.org/wiki/Changeling#:~:text=A%20common%20way%20that%20a,within%20Irish%20and%20Scottish%20legend. > given to screaming and biting. It may be of less than usual intelligence but may equally well be identifiable because of its more-than-childlike wisdom and cunning. We've been cautioned not to lean hard on the strengths but instead focus on weaknesses. Which is why I stopped showing algebra in kindergarten.
Institutions weren’t a thing til the 19th century. There were hospitals for the severely disabled in the 9th, but only in the Muslim world. People cared for their own. And they adapted. Humans are really cool critters sometimes.
Really like your 2 examples of 'the old days'. But those are examples of situations that worked out for those involved. I wince, thinking about all the folks who didn't find their role in life, & whose lives were not so great.
I work in a power plant. The amount of undiagnosed autistics in their 50/60/70’s is insane. One way to tell is they don’t retire cause all they have is their job. They’re great workers, mechanics, tinkerers, problem solvers of the most tedious sort. You give them almost no direction, its like “you keep this thing running”, and they just do somehow. They’re very safe workers too, they consciously are aware of all the rules and best practices, and think through every task before starting. All they talk about is what they’re working on though, and the shuffle around staring at the floor. They always have to show someone the problem before removing or fixing it, no comment about it, just “come here, you see that, yah its split and shouldn’t be, split from heat, I’ll replace it and add insulation.” Great, you do that! Like if a man is 60 years old, lives alone and works on cars as a hobby, never dated, never married, well they’re probably autistic. “They were always kinda shy, they just are so interested in their hobbies, real mans man, doesn’t get women, just wants to swing their tools”. Farmers, mechanics, niche trades (controllers, electronics, nerdier less social trades). Its a type for sure, used to be a personality type, now its diagnosed to give them help if they require it. This is needed too, cause there is also the older autistic man who stops showering randomly and doesn’t understand why they’re getting called to HR. Since they’re undiagnosed it doesn’t go well for them, they seem like they had a mental breakdown, but when asked say there is no change on their life, no added stress, and its all very disconnecting to the behaviour. It causes a lot of confusion, and if someone brings up “they may be autistic” then it becomes a question of “should they be working here then?”. Diagnosing it causes a stigma as well.
This is a very helpful post. I (72m) have known many people that fit these descriptions. It's sad to me to think how long they lived their lives misunderstood, even if they did find a niche to fit into. Not only misunderstood by family & community, but by themselves, too. I wish them peace in their confusing world.
I think today’s world has a greater focus on connecting and socializing, mainly due to the ease of it. I think this has exacerbated the issue. Education has also become broader, making specialization or finding a niche more difficult.
This is what everyone who shits on the increase in diagnosis misses - autistic people exist even if they aren’t diagnosed and it can be absolutely life-changing to finally understand yourself. It took me until 37yo and I can finally start working WITH my brain instead of against it and trying to fit into the neurotypical mould that I’ll never fit in. Some neurotypical people really take for granted what it’s like to live in a world built for you, so they don’t realise the impact of not understanding why you can’t just do stuff like everyone else for no apparent reason.
Science marched on, when I was in highschool back around the dawn of the 1990's, we had the dawn of the idea that teens and young children can and should see a therapist and be treated for things like depression. My psych teacher in High School said that when he was in college the smart thinking at the time was that depression only happened in adults. Flash forward two decades and that was revised.
These kinds of things have always been around. This isn’t something I’ve researched much so take it with a grain of salt. There’s myths of the fey stealing children and replacing them with a changeling. A child that’s been replaced roughly exhibits autistic behaviors, and this occurs at an age where autism typically becomes apparent. In general, a lot of mental health conditions gets explained with the supernatural.
> A child that’s been replaced roughly exhibits autistic behaviors, and this occurs at an age where autism typically becomes apparent. Absolutely. https://en.m.wikipedia.org/wiki/Changeling#:~:text=A%20common%20way%20that%20a,within%20Irish%20and%20Scottish%20legend. > given to screaming and biting. It may be of less than usual intelligence but may equally well be identifiable because of its more-than-childlike wisdom and cunning.
I noticed this page said they sometimes steal away adults, particularly women who were new mothers. I wonder if this is some kind of explanation for post partum depression.
Remember your “weird” grandpa that used to obsess about stamp collecting and trains and ate the same oatmeal for breakfast every day for 50 years? Yep.
I believe part of the answer is that Asperger’s is no longer its own disorder and is now part of the Autistic spectrum.
Is it? I was diagnosed with Asperger's about 10 years ago. So am I now just 'autistic'?
asperger’s as a diagnostic term left the dsm-5 in 2013. you may have been diagnosed with it prior to then and it’s cool if you still want to refer to yourself as that, but if you were evaluated today you would probably be diagnosed with autism instead. virtually just a label change
I was evaluated about 6 months ago and the official diagnosis is "high functioning autism" but when going over the report, the psychologist said I was, quote - "classic Asperger's."
They may have been educated before the change, and still use old terms. It's part of why many psychologists can't diagnose adult autism, or will miss it - we mask too well, and they aren't trained to catch high maskers.
Is there any benefit to being diagnosed if you’re highly functioning and mask exceedingly well
Accommodations, knowing for sure you are diagnosed, being able to put it on medical records for medical procedures so hospital/clinic staff can adjust accordingly, etc. Masking well drains us. That description = me. I got it for graduate school accommodations. A lot of schools don't take ADHD as seriously as autism. It's ridiculous. Otherwise, not really, though I do think insurance should be covering it for adults so we can get an accurate number & to allow people to get accommodations with doctors note.
It's a tradeoff. Diagnosis always carries with it the risk of stigma from (for example) medical professionals, but having documentation can make things like getting accommodation at work easier. For some people, it's easier to have the accommodation. For others, especially if you have other stuff going on, (medical or mental) you might prioritize not running the risk of being taken less seriously. Autism can sometimes turn into a catch-all diagnosis, similarly to the way that people joke about their broken leg being diagnosed as fat.
The DSM doesn't have a "high functioning Autism" diagnosis. Fwiw, the healthcare professionals who do the most research and treat those with ASD know this can be quite invalidating to those within the spectrum. There are "levels" in the official DSM-V. And, Asperger's is *technically* still part of the ICD coding, especially for insurance. To note, this is all in the US. https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-criteria.shtml If you think about the spectrum as a circle, more than a line, then you can begin to understand that no one is more or less Autistic, it just means their symptoms require more or less support. I know that some might say "high functioning" is synonymous, why be so literal... well, a lot of us Autists struggle with black and white thinking, so being literal, is quite literally, one of the most common symptoms. Language can be extremely helpful when treating those within the Autism Spectrum.
My understanding is also that Asperger is also the name of the Nazi doctor who formally described it. So besides a better understanding (i.e. Asperger's is basically part of the autism spectrum), there's also a push to move away from Nazi assocation.
[удалено]
Correct, or also put as high functioning autism or autism level 1 (not that functioning and levels are all that useful or correct) I got my autism papers 2,5 years ago and im lvl 1 , 10 years ago it would have been aspergers
Autism as a diagnosis wasn't widely accepted until 1980 or so. A number of things we now consider part of the autistic spectrum were labeled as other conditions until quote recently. Aspergers, now considered a relatively high functioning part of the autistic spectrum, didn't leave the DSM until 2013 for example. Before that they were labeled as something else. It's not new, just categorizing and treating it is. Modern mental health, as a full science with its own verbiage, official diagnoses, pharmacological tie ins, etc.... is only about a century old and is still developing rapidly.
Yeah, people need to remember that the first ever person diagnosed with autism died *last year*. It’s a very recent diagnosis.
It's been exactly a year and a day since he died.
Well how about that
The paper that began distinguishing autism from schizophrenia was publish in 1943. It's still relatively new as a studied diagnosis so yes, it seems like the number of people diagnosed has increased because the understanding of the condition is still growing.
Fun fact: the social impairment that often accompanies chronic schizophrenia is still sometimes referred to as autism.
And the public at large in the US largely learned about it from a popular TV show St Elsewhere. I’m in my 60s and when I was young in the 1970s, people with severe autism to the point of being non communicative were often referred to as “deaf and dumb”. I remember hearing the term used a lot.
It was either St Elsewhere or Rain Man. For me, it was Rain Man when I first learned about it.
I'd bet five danishes that Kierkegaard was autistic/had ASD.
Much of the basis for early autism research came out of nazi Germany when they were exterminating the intellectually disabled. The doctor played up the math/engineering autistic trope to show that a subset of these people would be useful and should not be killed. Autistic people without those skills were left out, because the doctor couldn't justify it. And to be clear, he had no problem killing the other type of autistic people so don't think too highly of him. So this focus on a very narrow subset of autistic people by a nazi became so ingrained in the academic discourse that to this day it's still how most people think of autistic people.
> Aspergers, now considered a relatively high functioning part of the autistic spectrum, didn't leave the DSM until 2013 for example. Asperger syndrome, together with Rett syndrome, Heller syndrome, and PDD-NOS all fell in the same group as Kanner syndrome (Classical autism) in the DSM-IV, specifically ICD-9–CM group 299 (Pervasive Developmental Disorders), with Kanner syndrome (Classical autism) being the group leader (having subcode 00), and PDD-NOS being the catch-all for everything that fell in the group, but was not otherwise specified. In the DSM 5, they essentially renamed ICD-9–CM group 299 to Autism Spectrum Disorder and merged everything in ICD-9–CM group 299 together under a single name. ICD-9–CM group 299 was renumbered in the ICD-10–CM to F84.0
Consider ADHD as another example of something that has had an incredible increase in diagnosis. I am one of those "new" cases. I am a high functioning 43 year old man with a wife, 2 kids, my own business, home, cars and all the other bits. And yet I was recently diagnosed with inattentive type ADHD and started treatment. To say that taking the stimulant medication made a huge difference would be a massive understatement. As a kid, my grades swung between A+ and a C, depending on the subject and the teacher. If I engaged with the subject and the teacher I fucking aced it. If it was something I wasn't drawn to I checked out. This is despite desperately not wanting to check out. When I got to university this became even more pronounced. I wanted to do the work and the study, I just couldn't. For people who don't have adhd I found it impossible to explain why I would just not do the things that I needed to do, that I wanted to do. Until it was framed to me that what I feel when trying to do these tasks would be the same as a normal brain going out on a Friday night, getting hammered, coming home at 2pm and then their alarm going off at 6am to go for a 10km run. That is how hard doing tasks that aren't in my current interest focus are to do. Now I take dexamphetamine, which is a stimulant and part of what is in Adderal (don't get that here). Now I can just do the things that I want and need to do, without them either being a passion or earth shatteringly critical. Doing my job is so much easier that it's a fucking joke. I can remember to do things, I don't forget where my keys are constantly. Back in the 80s and 90s there was zero chance of me being assessed, let alone diagnosed, because I didn't have the behaviour issues and I got good enough grades to get by. But I had it. So clearly looking back I had it. And the thing I struggle with the most, and have to be very careful about not dwelling on, is how many opportunities I missed, how many fuck ups I made, and how many friends I lost because of undiagnosed ADHD. There are just as many people who got through life not being diagnosed as on the autism spectrum.
As a 42 yr old woman with two kids and a very functioning career, this is so relatable. I highly suspect I have ADHD but have been afraid to go further with testing/diagnosis because I don't want to be seen as one of those "oh now everyone thinks they're have it" people. It's hard to convince myself this is more than just a series of personality "quirks" or that everyone isn't like this. Your post is pushing me toward talking to someone about it because that was exactly my experience as a student. It kept me from pursuing more challenging higher education. I feared I would lose interest and then the money I invested.
I still struggle with feeling like a fraud or seeming like I’m jumping on the bandwagon, and I was diagnosed with ADHD as a female child in the early 90s (not very common). Even knowing I had it my whole life, I still struggled massively and I masked/pretended I didn’t have it for so long. I finally got to the place a few years ago where I needed to figure out how to support myself so I started looking at adhd coping mechanisms. If you feel nervous that you’re a band Waggoner, just remember that you don’t have to tell anybody about testing/diagnosis. It can just be for yourself and finding your own coping mechanism and potentially medication.
Thank you. That's very true. I don't tell everyone I take thyroid meds every day. I suppose it's no different.
I had been toying with the idea of getting tested for at least 3 years. But I had exactly the same mental thoughts you are having. The fraud, the just another one on the train, an excuse. And then on the flip side there was the other thought, the one that is what if I don't have adhd, and all those things I would forget, the bills I wouldnt pay, the shitty time management and districtedness, what if that was actually just because I was shit. Then came the moment where I said I really need to actually see someone. I had dropped my daughter at school, and first thing the next morning she was off on school camp. On the way home from school I needed to do 2 things. 1, buy some lollies she can smuggle into camp. 2, go into the chemist and get a label printed for her medication. I just drove straight home. Walk in, wife says "did you get the lollies and the medication?". "no. fuck" off I go. I get to the Chemist and get the label. Stand in front of the chemist "I know there was something else I needed. I can't remember" drive home. Wife "lollies?". Fuck. Off I go again. I made the doctors appointment that day. I had documented everything in advance of seeing my GP, and then when I got there I just blah blah blah'd at her. She gave me a referral to a psychiatrist. I then got home, and called the center she had recommended. 18 month wait time to see a psychiatrist and $5k out of pocket. Honestly I just hung up the phone and cried. I was completely defeated and getting to the stage of talking to a doctor was hard enough. Fortunately my wife is amazing and helped me find other options. Where I live you can have a telehealth psychiatrist provide instructions to your GP and your GP can then prescribe the medication if they are willing. My GP was, and I went down that path. Wait time was 2 weeks to see a Psychiatrist. I scored 1 point short of the maximum score for inattentive ADHD. I took the first tablet at 8am on a Friday morning, a day I had taken off because we had friends coming over for a dinner party. We had a fucking disaster start to the day with me smashing the glass kitchen aid bowl, which my wife needed. So about 30 minutes after taking the pill I'm in the car to a local store to buy a replacement, and I have 3 other things I had to buy. Out of habit I am repeating those 3 ingredients in my head over and over so I don't forget. And then while driving, the drug kicked in. It was like a fog lifted, that I was no longer fighting a sludge to keep these things in my head. I just knew them. Honestly it was the most at peace my brain had ever been, short of when I was off my face on morphine after a motorcycle accident. I drove to the store, I bought the replacement bowl, I walked into the super market, I bought the 3 things I needed. And then I drove home. I know how fucking dumb that sounds when typed out. But that was a huge thing for me to achieve.
> As a kid, my grades swung between A+ and a C, depending on the subject and the teacher. If I engaged with the subject and the teacher I fucking aced it. If it was something I wasn't drawn to I checked out. This is despite desperately not wanting to check out. When I got to university this became even more pronounced. I wanted to do the work and the study, I just couldn't. > > For people who don't have adhd I found it impossible to explain why I would just not do the things that I needed to do, that I wanted to do. Until it was framed to me that what I feel when trying to do these tasks would be the same as a normal brain going out on a Friday night, getting hammered, coming home at 2pm and then their alarm going off at 6am to go for a 10km run. That is how hard doing tasks that aren't in my current interest focus are to do. > > Now I take dexamphetamine, which is a stimulant and part of what is in Adderal (don't get that here). Now I can just do the things that I want and need to do, without them either being a passion or earth shatteringly critical. Doing my job is so much easier that it's a fucking joke. I can remember to do things, I don't forget where my keys are constantly. This is torture to read, because I relate to all of it completely.... except after getting diagnosed in my 30s, I've tried every major ADHD med there is, at low-to-high-doses, under all the optimal lifestyle/health conditions they insist on, and none of them made even a 1% difference to me. On any dose of anything - Adderall, Strattera, Concerta, Dexadrine, Vyvanse, Guanfacine - I'm still *completely*, debilitatingly beholden to thinking *only* about whatever random subject I'm naturally drawn to that day/week/month, same as it's always been for me, no matter how badly I want to tear my train of thought away from it and do the work or studying I desperately need to do to maintain an adult life. I've been through two ADHD-specializing psychiatrists about this, and they've been painfully dismissive and impatient of my experience - it honestly feels like they're so used to steady praise from all the patients who have the classic *"it's like night and day!"* experience as soon as they get medicated, that they don't want to deal with a seemingly-hopeless case at all. They just glower and tell me the same thing I heard from every disappointed teacher, mentor and parent I've ever had - *"Well, you just need to FORCE yourself to pay attention and REMEMBER not to get distracted and PROMISE yourself to stay focused"* etc etc etc, when I tell them *I can't,* I'm trying my absolute hardest but *I still can't*, even on meds. They respond like I'm sitting there saying *"meds help but they're not magic enough, and I want them to magically do everything for me"*, when I'm making it as clear as possible that I'm saying *"meds aren't helping in any way, shape or form"* Sorry for the onslaught here, I just really don't have any other outlet for this left. Therapists won't listen, and even actual ADHD subreddit never approves my posts saying all of the same.
Maybe it's not ADHD but something with similar symptoms.
An important aspect of understanding of neurodivergent behaviour is that it is maladaptive to the given environment. One can easily imagine how autistic trades can be advantageous is certain environments. For example, autism in a farmer living in a small, mono-culture community regulated by codified order, another words one of Mechanical Solidarity, would be well adapted and can be very positive. Thus, up until recently in human history, most of us simply didn’t live in environments that saw these behaviours as maladaptive. Secondly, we have just begun to seriously seek and diagnose autism and its spectrum. The better we get at it, the higher the numbers will go until we reach the true population numbers. Then the rates will probably plateau given that it is most likely a genetic and not an environmental condition.
My daughter was recently diagnosed with autism by a psychologist, but just barely. Meaning that in her professional opinion, my (high functioning) daughter was right on the edge of the spectrum. She went ahead and gave her the diagnosis so that we could know what to do going forward and get her any necessary accommodations. So I would chalk it up to better understanding, better diagnosis, and just more acceptance. The typical behaviors and signs have always been there; we just didn’t have a name for it. And high functioning people on the spectrum learn to “mask” well, and to fit in the best they can, though it’s a constant struggle and pretty exhausting.
For females in particular the diagnosis can be much harder. Lacking/not understanding social skills are a common sign of ASD but females are better at copying social cues. They may not understand what/why they’re doing it but they’ll mimic what they see.
Took me 35 years of life to realize that no, actually, everyone else didn't have to carefully plan out every social encounter to avoid gaffes.
It boggles my mind every time my girlfriend walks in to a restaurant with no idea what she's getting.
Yeah that's weird, your meant to just get the same thing everytime for ever, right?
Yeah also girls in general from a young age have a higher expectation to learn social skills and conform to gender expectations, so it makes sense that since autistic women are socialized differently they are able to mask more. Even neurotypical women make to some extent, though to a lesser extent of course
“Boys will be boys” Shrug But girls have to behave and conform, and always be polite and so on and so on…
Autistic female, can confirm. It also didn’t help I was a “gifted” child and therefore considered too smart to be autistic when my parents were pursuing a diagnosis.
That highlights another reason for the increase in diagnoses - capable / gifted intellect is no longer seen as a negative indicator. It just means that cognitive development isn’t delayed, or may be atypical in another way eg; hyperfixation and/or increased rote memory (both ASD signs)
It’s because of that reasoning that I only recently got a diagnosis, but man I wish I had gotten diagnosed when I was younger because my teenage years were a struggle and having that understanding of myself could’ve helped considerably.
Suicide rate for women on the spectrum is like 20x neurotypical. "Only" 9x typical for guys. But I agree, being a woman on the spectrum is arguably much rougher.
Yep. I'm in the same boat as your daughter. If I were to get diagnosed today under the current DSM5 definition, I'd just barely make the cutoff for a diagnosis of ASD. I was diagnosed with Asperger's under DSM4 and, now that I'm older and have gone through a decent amount of therapy, my symptoms are relatively minor. If I were to go in to get diagnosed today, chances are high that I wouldn't make the cutoff for Autism Spectrum Disorder due to how well I've gotten at masking.
Thankfully, as long as the person doing the assessment is suitably trained to do adult autism assessments, they will tailor their questions to get behind the mask. For example, I'm capable of doing pretty much anything on my own, but if I can't accommodate my autistic traits then I get very uncomfortable and masking takes up a lot of conscious effort leading to cognitive exhaustion. Since I have autistic traits that require support (and masking is a type of support) I got diagnosed with level 1 ASD.
Great answers here! I wanted to add something else - I work on autism research and something I've noticed is that parents many times are in denial of their kids having ASD despite overwhelming evidence that they do. They will say their kids are developing properly at home and just "nervous during the test," or some other excuse like that. I think as it has become more understood and socially acceptable to have children with special needs, the number of diagnoses has risen (and will continue to rise) since it's easier for parents and family members come to terms with it and get their kids the opportunity to get diagnosed and helped from professionals.
It's this. It has been suggested to me in the past that I might be on the spectrum. I never pursued a formal diagnoses. However, my new psychiatrist has asked me to do the social inventory and have a family member fill it out. My father straight up refused. And when I was talking to my Mom about it, she was saying stuff like, "You had a lot of friends as a child!" And I pointed out, "No I didn't. Remember I was the only girl who wasn't invited to So and so's sleepover?" "Well that's just because so and so was jealous of you." She made excuses like that my entire life. I was never the problem, she would just tell me other girls were "jealous" of me. The truth is, I was very blunt and came across as incredibly rude and uncaring. It took me a long time to figure out on my own how to mask. And I can still only do it sometimes. But my brother and his family came down, and he was like, "Oh yeah, I've thought you were autistic for years, I just didn't want to say anything. But yeah, I'll fill out the form for you." My Mom refused to fill out the form honestly. It's like if she admitted anything was different about me, it would reflect badly upon her as a parent that she didn't notice, or get me any help. So the form is like...attacking her identity as a good mother. It's frustrating.
People having children later and later and advances in pre-mature birth care are definitely factors as well: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2724463/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7452728/
Had to scroll for too long to find this.
It's only recently been identified as a condition. Even 30 years ago I was diagnosed as "Asperger's Syndrome" rather than autistic, but nowadays it would be part of the autistic spectrum. It's not a rise in autistic people. It's a rise in people being identified as autistic.
I’m high functioning autistic. 40 years ago when I was a kid, autism was something people only knew from Rain Man, where it happened to people who could barely function. I was just labeled as “gifted”, even though I’d struggled mightily (and to some extent still do) with social situations. So yeah, we’ve learned more about it since then.
I’m pretty confident that I’d fall on the spectrum if I got a diagnosis. I was also labeled “gifted” because I was a big reader early, but I too suffered mightily with social situations. I was more content going off and playing pretend by myself on the playground than hanging around other kids. I could never fit in no matter how much I tried.
I was one of those weird but bright kids who had difficulty making friends and depended on the social skills of one specific friend. I had obsessive interests. Rigid thinking. Giant meltdowns at home. Could only wear certain types of fabric. With diagnosis as an adult, it doesn't make a difference. If anything the label has given some odd colleagues the ammo to try bully me. Which is a weird thing to do in adulthood. But realistically, I have a wider social network and more finetuned social skills than most other people that aren't on the spectrum now. I think because at some point people get lazy on their social skills and stuck in their ways. I've had to learn to be adaptable.
3 things, primarily: 1 - They expanded the diagnostic criteria. You used to need to be *very* heavily impacted by autism in order to be diagnosed. Like, basically non-verbal and never going to live independently. Now you can be much less impacted and still qualify. 2 - There's much more awareness, so a much higher percentage of those impacted are being diagnosed. 3 - There's talk of "tech-induced autism" in education and psychiatry, where kids are lacking social skills because screen time is replacing socialization.
4- women were thought to not have autism and couldnt get diagnosed with it for a long time. this is obviously bs
Number 3 is just Reddit
3 is literally something I heard about for the first time from SPED teachers and service providers.
Also, de-stigmatisation means there is less reluctance to be or have a family member diagnosed. Which means more people are being tested.
Our understanding of autism has changed. It used to be you were either "autistic," and screamed and had breakdowns in class, or you had "Asperger's," and were a little eccentric and hyper logical (obviously this is oversimplified but you get the idea). Over the past 30-40 years we've realized that the two are actually one and the same, and that there are varying degrees, hence the more modern term "autism spectrum." Due to the broadened definition of autism, more people who fall on the "high functioning," side have been getting diagnosed and getting the help they need.
ok i try to go full ELI5 with this: A long time ago, some people where just seen as weird, retarded or idiots. Now we know why they behave different than most people and we know how to treat them better. Those are the same people, we just know better now.
So, the seeming explosion of autism diagnoses in recent decades is a pretty complex issue. It's not so much that there's been a massive increase in autistic folks; rather, we've gotten way better at spotting it. Back in the day, autism was this tiny, rigid box that few people fit into. Now? We understand it's a whole spectrum, and our diagnostic net is much wider. Plus, there's way more awareness these days. Parents, teachers, doctors, therapists —we're all more clued in to the signs. Toss in earlier diagnosis, reduced stigma, and better access to services, and you've got a recipe for higher numbers. Some researchers are poking around at environmental factors, but there's no smoking gun there yet. Genetics play a big role too, so when autistic individuals have kids, it's more likely that some of those little ones might also be on the spectrum. So yeah, while we can't rule out a true increase, most of us in the field see this "autism boom" as mainly a reflection of our evolving understanding and improved recognition. We're not necessarily making more autistic people; we're just finally seeing the ones who were always there.
> Plus, there's way more awareness these days. Parents, teachers, doctors, therapists —we're all more clued in to the signs. To underscore this point, I know multiple people who have been diagnosed with autism as adults only after their kid was diagnosed and they realized they were very similar to their kids at that age. 20-40 years ago the awareness wasn't there for this stuff so they just flew under the radar.
Not diagnosed. The first person to ever be diagnosed with Autism (Donald Triplett) died in 2023.
TLDR: It is not due primarily to increased diagnostic methods or differences in methods. It is a true increase. From Neuropsychologist Catherine Desoto: Before addressing the question, it is crucial to state what is not in dispute: Changes in diagnostic practice have occurred. It is assumed this has played a role in the autism prevalence rate. Children with mild autism who would not have been diagnosed with autism decades ago, would be diagnosed today. However – the question is whether there has been an actual increase in the number of children who exhibit the behaviors we diagnose as autism (marked communication difficulties or lack of language, repetitive behaviors, tantrums in the face of routine changes, low IQ on standard IQ tests). This question has been addressed. Atlaadottir and colleagues (2007) reported the change in autism rate for children born in Denmark during the 1990’s, (the sample size was 669,995). Atladottir used standardized case ascertainment and standardized diagnostic procedures to document an increase in both Autism Spectrum Disorders (ASD) and Childhood Autism in Denmark. Neither diagnostic changes, nor children moving in or out of the area were an issue because the entire country was monitored, and the diagnostic process did not change across the years. There was an increase. Decreases in age of diagnosis was considered and accounted for some – but not all -- of the increase. Importantly, the increase was most pronounced when the stricter diagnostic definition of Childhood Autism was used.[1] Autism prevalence across time in California has been analyzed as a function of changes in diagnostic practice. Results have shown that there have been changes in diagnostic behavior—these changes have been quantified and appear to account for a 67% increase in the number of diagnoses (Hertz-Picciotto and Delwiche, 2009 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4113600/ ), however as noted in their study, there had been a nearly 700% increase in prevalence. As a whole, this suggests that diagnostic changes and typical age of diagnosis have occurred, but do not come close to fully accounting for the observed change in prevalence. Another earlier analysis conducted within Minnesota found the increase in ASD to be as high as a 14-fold increase (Gurney et al., 2003). The study by Gurney and colleagues attempted to dissect competing influences on the increase in Minnesota. The data rule out diagnostic substitution as the cause of the increase. The issue is confusing, even when one tries to follow the scientific literature. This is partly because there are some studies that reportedly do not show an increase. Methods matter, so bear with me. For example, the often-cited Latif and Williams study (2007) report the lead author’s diagnoses of ASD across time (1988 to 2004) in a small area of England and conclude that classic autism has not increased. However, the study may have been limited in that determination of the precise diagnoses (ASD; “classic Kanners” autism; “other” autism), did not employ any of the guidelines or standardized tools recommended for diagnosing and classifying autism, but relied on clinical judgment. It is important to note, when deciding on a question of such importance as children’s health, any differences in methodology that could explain discrepant results. And this part of the result matters: The decrease in “classic Kanner’s” autism reported by Latif and Williams occurred concurrently with their report of a more than four-fold increase in “other forms” of childhood Autism, and a more than doubling of ASD cases. Thus, along with the small sample size, the reported lack of increase in classic autism is based on the judgment for classification of approximately two children per year to other forms of autism– occurring in the context of a dramatic increase in total autism cases across the years of study.[2] Total autism cases were documented as increasing. It is OK to compare and judge the methods when results are discrepant. It has been asserted that experts deny a true increase[3], but no evidence for this is provided. Expert opinion matters because experts are more likely to read and analyze differences in methodology for themselves and/or may have direct experience. One way to determine what experts think it to actually poll experts who have training in clinical research methodology. To my knowledge, there is only one empirical investigation of experts’ views on the matter, and I am the lead author (DeSoto and Hitlan, 2013 https://file.scirp.org/pdf/OJPsych_2013042414375485.pdf ). It was hypothesized that actual clinical experts would not dismiss the increase in autism as artifact caused by increased awareness. The design was a stratified random sample with participants selected from large, medium and small cities across the United States and various regions. The participating psychologists and doctors were asked, “In your opinion, which is most accurate about the changing rate of autism?” and given four choices. Seventy-two percent reported either the true rate may have or definitely has occurred. Participants were also asked to respond to the specific question of whether the increase in autism was fully explainable by changes in how autism is diagnosed. The results indicate that the majority of professionals do not believe that the increase in reported autism is fully explainable by changes in diagnostic practice. Twenty-eight percent of professionals surveyed thought that diagnostic changes were accounting for all of the increase in diagnoses, while 60% thought this did not fully explain the observed increase. The Centers for Disease Control (CDC), which has been somewhat hesitant to openly state a true increase has occurred, has nonetheless documented a continuing increase. The most recent report (CDC, 2018) documents an overall 15% increase compared to 2012 levels. The CDC uses excellent methodology, monitors the rate of 8 year olds (to avoid effects related to earlier of later age of diagnosis), and uses standardized identification. They have a monitoring network in place that is designed to document the actual number of children with ASD in large, defined regions, and is even able to offer analysis of the effects of minor variations in diagnostic practice. “Recent changes in the clinical definition of autism did not have much impact on the percentage of school-aged children identified as having ASD by the ADDM Network,” (CDC 2018 Executive Summary). It is important to note that using standardized definitions, the percentage of children with autism varies widely, as well as the amount of increase. For example, in New Jersey, the rate is one in 34 children, with a 20% increase over the prior estimate, and 28% of children on the spectrum had IQ scores below 70. In Arkansas, as another example, only 1 in 77 children meet the diagnostic criteria, and prevalence has not changed much in the past decade. This may suggest to some (like me) that some places actually have a higher incidence of a specific phenotype within the spectrum, one that continues to increase and is possibly more severe. At any rate: Yes, the true prevalence is increasing, and it is not (all) due to diagnostic changes. CDC Community Report On Autism Executive Summary, 2018. Downloaded May 20, 2018. https://www.cdc.gov/ncbddd/autism/addm-community-report/executive-summary.html Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doernberg, N., Boyle, C., & Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289, 49-55. Gurney, J. G., Fritz, M. S., Ness, K. L., Sievers, P., Newschaffer, C. J., & Shapiro, E. G. (2003). Analysis of prevalanece trends of autism spectrum disorder in Minnesota. Archives of Pediatrics and Adolescent Medicine, 157, 622-627. Atladottir, H., Schendel, D., Dalsgaard, S., Thomsen, P., & Thorsen, P. (2007). Time trends in reported diagnoses of childhood neuropsychiatric disorders: a Danish cohort study. Archives of Pediatrics and Adolescent Medicine, 161, 193-199. Latif, A.H. A & Williams, W.R. (2007). Diagnostic Trends in autistic spectrum disorder in South Wales valleys. Autism, 11 (6), 479-87. DeSoto, M.C.& Hitlan, R.T. (2010). Sorting out the spinning of autism: Heavy metals and the question of incidence. Acta Neurobiologica Experimentalis, 70 (2). 165-76. DeSoto, M.C. (2009). Ockham's Razor and Autism: The case for developmental neurotoxins contributing to a disease of neurodevelopment. Neurotoxicology, 30 (3). 331-337. DeSoto, M.C. & Hitlan, R.T. (2013). Professional opinion on the question of changes in autism incidence. Open Journal of Psychiatry, 3 (2A), 61-67. https://file.scirp.org/pdf/OJPsych_2013042414375485.pdf [1] Note that early deniers of an increase said that this type of methodology is the only type that can be relied upon to answer the question of increase ( e.g. Fombonne 2003b, p. 375), with very large studies being preferred to access actual incidence increases (Fombonne 2003b, p. 376): this large study counts ASD and autism separately, the same way, across time in a circumscribed location. [2] Kanner and Eisenberg’s 1956 diagnostic criteria for diagnosing autism was used throughout the study, but in 1993 the criteria used for ASD and Aspergers were updated to the new editions of ICD and DSM. It is not stated why the DSM was not used for classic Autism. [3] Example of assertion without supporting evidence: “Though the concept of an ‘autism epidemic’ has become a notion of faith among parent campaigners, most authorities in the field believe that the increased prevalence of autism can be readily explained by widening diagnostic categories and increased professional and public awareness” (p. 297, Fitzpatrick, 2007)
[удалено]
Everyone saying it was underdiagnosed is only giving you half of the answer. There's indeed evidence that the incidence of autism has increased more than can be explained through underdiagnosis alone. Scientists are actually looking at environmental factors, like decreased childhood socialization and microplastics, to explain the difference between the increase observed and what we would have expected from underdiagnosis. While autism has a genetic component, there's evidence that it can be triggered or worsened by environmental factors in the womb or shortly after; no, not vaccines specifically, but the idea itself isn't bunk like people believe. [For the inevitable doubters, here's one such study.](https://pubmed.ncbi.nlm.nih.gov/35134716/) It's not quackery or pseudoscience; it's just not popular to talk about because people have built autism into some kind of intrinsic identity that's "not a disorder" and "just another way to exist." I say this as someone who has been formally diagnosed himself: it's a nice narrative to believe that an increase in acceptance is just leading to people who would have previously been labeled "weird" being diagnosed, but that's not exactly what's happening--it's only a small part of it.
It was called something else. Tuberculosis is an ancient disease, but you won't find any mention of it prior to the 1880s because it was called consumption. And was common enough that it was considered a personality trait. There's terms like Idiot Savant that started in the 1880s as well. Mental Retardation from around 1901. Imbecile entered English around 1550, but the meaning which transferred to English from French hasn't switched meaning since Latin. Cretin from 1775. In the 1980s terms like Mental Retardation were on their way out, but I remember being called "Slow" and being called an Idiot Savant.
There is a study which seems to suggest that prenatal exposure to air pollution can be linked to higher risk of autism in children. study link: [https://ehp.niehs.nih.gov/doi/10.1289/EHP9509](https://ehp.niehs.nih.gov/doi/10.1289/EHP9509)