Self Diagnosed People: How Did You Learn About Autism?

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I was self diagnosed for a good two years before getting my evaluation, and it was only thanks to my mom bringing it up that I learned I might/did have autism in the first place. For those who didn't learn it from their parents or diagnosing practitioners, how did you learn about autism and come to suspect yourself of having it?

Eleven years after we made it to the DSM, my AS mother was dying, and my NT sister was in distress over never having heard typical motherly sounds, such as "I love you." I'd been going to recovery programs for family dysfunction for years but none of the stories there really seemed to match, and sis had never really been satisfied with my guesses about mother's condition. I did another web search, which turned up a list of AS characteristics, and suddenly both my life and mother's made sense. I was very disappointed that I'd spent over a decade with people who never considered a lack of plasticity - everything was attributed to psychology. Mother had, at least, managed to avoid a mis-diagnosis, and remain "eccentric."

I also sent that list to a guy on a tech listserv. He was married, with a family and a decent business, but I suggested he check himself, and he wrote back that he was chagrined to find a fit. Something in his approach to problems tipped me off.

I read a lengthy newspaper article about Asperger's Syndrome not long after the term first appeared in the diagnostic literature. It all sounded very familiar but I then spent twenty years denying the possibility that I might have it myself.

It was only when my life was starting to fall apart and I had dismissed every other possible cause that I decided to revisit Asperger's/Autism. Second time around I learnt a lot more about it from the internet than I had from that newspaper article. Following that I self diagnosed but was not really happy with diagnosing myself with something so complex so sought out a formal assessment.

My son born in 2009 was diagnosed as having typical autism So I learned about autism and read many books. Little by little I understood that I am as well autistic, just because I have some symptoms like executive dysfunction. I am somewhere in the broader autism phenotype. I understood as well that my father is as well autistic and the mother of my father is very likely to have been autistic as well. And I discovered that there are other members of my family that are autistic as well. I am really convinced that autism is an hereditary disease. There is no doubt in my mind that autism is a hereditary disease.

It’s not totally hereditary. None of my family has autism.

It seems mostly hereditary....though in a more vague sense than Mendelian genetics.

I read an article that talked about it and was blown away how it described my life in a way that literally nobody else has. I was still skeptical as I am of most things I read so I went to the local library and started reading: in short I was absolutely blown away! It even described many of my obscure quirks like not eating foods that touched each other and memorizing plane/bus schedules. The fact many people at work (and my wife) suggested that I am on the spectrum without me even mentioning it pretty much confirms what I already know. I finally have a formal evaluation set up in a few weeks after nearly 8 years of increasingly suspecting I am on the mild end of the spectrum.

Looking back on my school report cards it was obvious all the teachers were describing Aspergers Syndrome but since it was a new condition back then they probably never heard of it. Today, I would imagine it would have been very quickly identified rather than me just being labelled as someone who 'needs to pay attention' and 'has difficulty focusing on the task at hand'.

Asperger’s didn’t become “official” until 1994, when it was inserted into the DSM-4.

Alas, it was taken away within the DSM-V.

Much was written about it in the aftermath of the movie “Rain Man,” which was a 1988 film.

I had heard about it sometime in the 80s.

I had read about Asperger's Syndrome in a psychology book in the late 1070s. I found the book in my college library at my science/engineering college. That was an appropriate place for it . So I figured out I was on the spectrum before Lorna Wing named it. I don't remember how close the description was to my symptoms, but I had no doubt it was describing me.

After my brother saw Rainman he made a comment that Raymond reminded him of me. He said this in front of my mother who said something dismissive. I said nothing, in my typical autistic way, and was a little insulted since I believed Raymond was portraying a much lower functioning autistic. From things I have read about Rainman recently, I realize he might have been closer to the truth than I had thought. I am planning on watching Rainman soon. If my brother had been a little more tactful, I probably would have discussed it with him. I wonder if he tried to get my mother to support him and failed.

^^ Raymond was the NT brother.

Raymond WAS Rain Man. Charlie was the NT, much younger brother.

Ten minutes to Wapner!

Seriously, in 1988, he would have been considered high-functioning because he could speak and reasonably take care of his personal needs.

By 1994, the Spectrum concept was finally made “official.”

For me it was via google searching - " High verbal and low spatial IQ" lead to "NVLD" which then lead to "Autism" .

I had heard the word used and had a random curiosity of "what does this mean?"

I really related in particular to stimming, repetitive behaviors, obsessing and hyperfocusing, narrow interests, and executive dysfunction. I had already realized some aspects of my more "social" differences, but I had just started to wonder about the others as they were interfering with my life.

What followed was a rabbithole of researching the subject and reading everything I could on it.

At the end of this process, I still am unsure whether or not I indeed have ASD. I can read social cues and fake the appropriate behaviors, but this was a skill that took years of practice and learning. I do wonder if my ability to fluidly read the social subtext, respond, and be selectively charismatic annuls the possibility of ASD. I do really relate to much of it, however, and I have always perceived a fundamental difference in the way I was processing social and emotional information compared to others.

When I was 11 Asperger's me into the dsm

When I was 16 , I read Omni article about Asperger's

Sounded familiar but didn't do anything about it

Diagnosed 21

For me it was after years of prayer as since I was a young child onwards, I have been having partial and full shutdowns and I had no idea what it was. Over the years doctors had tested me for just about everthing many times over from my heart to diabetis... Even had a HIV test! Everything! But nothing ever came up. All tests were always clear.

In the end a past doctor said that it must be some sort of allergy and that's as far as it got.

The issues both with thw shutdowns and due to the breaking down of masking meant that I was always changing jobs after two or three years. I just had to move on even though I couldn't but my finger on why and even though deep down I hated change.

So after many years and hitting burnout two or three times, in desperation I started to pray.

You know when God sends you answers right in front of your face but you can't see them for what they are? Well. That was me! I had several occasions after praying when God sent people that I knew and sometimes even strangers to me telling me I had Aspergers syndrome. The odd one said I had Autism. I honsstly thought they were messing around so I ignored them, and the odd stranger? Well. I was thinking along the lines of "Who told him to tell me that?"
God even send me a girlfriend who had aspergers syndrome and her son had autism... And I still didn't pick up on it, though in the back of my mind I was thinking that somehow something is odd as I can relate to what she was experiencing. And even then I it didn't sink in. I mean.... Well. When she had me take the basic online aspergers test that is scored out of 50 and I was in the boarderline area as I answered no to some questions as I didn't understand them, and the test said "See a doctor", I didn't take it seriously and thought "The next time I see my doctor for something else I will mention it just to ask". I visited the doctors several times for other reasons but when I went to ask I had complete mind blank. I totally clammed up. This happened for two years of doctors appointments so it was about 4 to 6 appointments?
Anyway. One day I happened to be exploring youtube. Prior to that I happened to see the same TV programme about autism twice because when I watched it the first time (And I don't normally watch things like that on TV), there was something about it that caught my interest, so when it came on as a repeat several months later I saw it again. But then the doubting nature took over and I thought "Poor people to have that" and I ignored it. (How can I have been so thick? I was experiencing a few of those symptoms and I was blinded to them somehow? It was like I thought that autism was some other condition and these were just extra little "Quirks" that I happened to share as well).
Then a few months later when I explored YouTube, I was bored and somehow I was thinking of subjects to explore.
"I know", I thought. "I will explore Prosopragnosia as I have that and my Mum has that" (Faceblindness!)
So I typed it in and one of the first links that came up was "Ask An Autistic". I was a bit angry with myself because I was not able to ask my doctor, so I did not click on the link and every time this link came up I ignored it. Three days of exploring every link I could find on the subject, I had totally exhausted every other link there was and this link came up again.
"I may as well watch what the lady has to say. I've seen all the other links on the subject" I thought.
Well. Wow! The first thing that rang a bell was when the young lady explained that there were strong links to autism and faceblindness. She explained her experiences, and I had to chuckle as I have nearly done the same on occasions... She said how she grabbed a complete strangers hand and would be walking down the street with them thinking it was her Mum etc...
But her simple ways of explaining things had me want to explore more. And when she said that 60% of people who have prosopragnosia are on the autistic spectrum, it was like a bell rangnin my head... One of those "Lightbulb moments".
I then watched many of her other videos on various autism related topics. I watched her videos trying not to let my Mum know or hear the distinctive start tune to her videos. You know when you first watch YouTube with slow internet and it takes about ten seconds to be able to turn the sound down? Well. I felt so guilty that it was as if I was watching pornography or something, as when I first casually suggested thatit may be possible that I might have aspergers or autism in the past, my Mum was saying many other excuses like we had been through a hard time etc (Which we had) and so I didn't want to bring attention to er that I was watching them.
However, she was noticing as I could hardly cover the music and I had once mentioned it and my Mum had said something along the lines to encourage me to watch other things instead...
But while watching other peoples links as well, somehow, though no one mentioned shutdowns, somehow meltdowns had an aspect which I could not fathom out in my mind what it was... But somehow meltdowns were related to what I now understand are shutdowns.
I became so determined to get to the bottom of this, that I decided that I had to book an appointment to ask my doctor once and for all if I had aspergers syndrome. (I reasoned that if I was on rhe spectrum that is what I was likely to have).
As the doctors surgery was closed for a few days as it was may day bank holiday, I had to be patient for the drs surgery to open, and when it did I asked if they had a quiet day to have an appointment. They said they don't get quiet days but they said I could habe an appointment witn a certain doctor I had not seen before. I had heard about her as she is rather straight to the point. Just like the female version of Dr Martin on TV.
The appointment was four days later. Those were a nurvous four days. To avoid clamming up with mind blank I asked my Mum to come with me. She did agree even though she was convinced I was not on rhe autistic spectrum. (I am convinced that my Mum is on the spectrum as well but that's another subject!)
Well, I had to start talking around the subject rather then go straight to the point as I had to do this to avoid mind blank. I managed to explain that I had faceblindness and the Dr said "So?" (As if it wasn't a problem in itself!) and then I happened to ask if I had Aspergers Syndrome and she said "Symptoms?" and my mind went blank. My Mum then spoke and said how I was strughling to keep in jobs etc. I had mentioned about the energy loss (I was trying to describe a shutdown where my body ends up on the floor like a limp vegetable!)
The Dr said she would put my case forward to the assessment team but she doubted they would accept me.
I wanted her to tell me there and then if I had it or not, as I wanted to rule it out or in so I could try to find out if the symptoms I had were related or not. I was fed up of years and years of various tests for just about everything... I really needed to know.
And I was accepted. The rest I have written about many times.

My niece was diagnosed a few years ago. My daughter wasn't "outgrowing" her hand flapping (age , it was increasing. Work had a brochure for Autism Awareness month. I thought maybe my husband was Autistic (he is unexpressive) and took the online AS quiz myself before asking him to, because I love quizzes. I scored high. (He did not.) Then I found Samantha's unofficial online list for women with AS and found myself. And my mother. And possibly my grandmother, an aunt and cousin.

Around 1965 autism suddenly burst upon the American public's consciousness as a thing. I was ten.

My parents had the hi fi radio on, and I remember listening to long, but oddly interesting (to me) talk show about autism. It had experts, and stress out parents of autistic kids. They made the point that autistic kids have a degree of disability comparable to that mentally ret*d kids with Downs, but they are very different and distinct from downs syndrome.

A great big Down's guy lived with his parents across the street from me. So Downs Syndrome was quite vivid to me. So okay..these kids are like Downs kids, but they are NOT like Downs kids...okay....go on...

They have normal IQs and look normal ( even have "handsome" features) but are hard to reach and act weird. And get into obsessive repetitive behaviors like spinning objects for hours on end.

I had already been being sent to shrinks by my parents for years by that time. But I had no diagnostic label. the implication was that I was some kind of neurotic who needed to shape up some how. .

Any ...way from listening to this radio show with grown ups talking about these children (who would now be classified as level 3, or low functioining, because the "spectrum" concept was still in the future- this was only the classic Kanner type autism) something occurred to me. That these autistic kids, and their odd behavior, sounded like me. I was not as severe as they were, but... maybe there is some kind of watered down version of autism. And maybe I have it?

So that was the first time that someone suggested to me that I might have something that amounts to aspergers/HFA. My ten year old self diagnosed my ten year old self has having something virtually identical to aspergers thirty years before most shrinks in the English speaking world had ever heard of aspergers.

But then I immediately withdrew my diagnosis. Because apparently no such thing as "mild autism" exists, I thought. And all of the grown ups in my life are right...that I am a horrible person of bad character, and I need to keep flogging myself.

Almost thirty years later Aspergers was added to the DSM, and they officially broaden autism into a spectrum. And I was finally officaly diagnosed in late middle age a couple of years ago.

Took half of a century for the mental health community to catch with the ten year old me!