What made you first wonder if you could be Autistic?

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Elgee
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29 Sep 2022, 12:19 pm

This question goes out to those who got their diagnosis as adults, like me. What made you first begin wondering if you might possibly be on the autism spectrum?

In my case, I came upon articles written by autistics, and they described me perfectly. But that was also in the context of having felt different all my life and having social struggles.



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29 Sep 2022, 12:21 pm

At the age of 9, I've noticed that I was in a special class and my sister who was in grade 1 was in a regular class at the time. That's when I started thinking that there's something about me that's not quite right.


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29 Sep 2022, 1:46 pm

I never suspected a thing until about age 65 my daughter turned on a BBC documentary about autistic teens at school. I started to sob (I never cry!) and kept saying it was like that, that could be me. Daughter consoled me and said "maybe you should try to find out if you are autistic". Funny because my kids had autistic friends with an autistic dad and I worked at a residential facility where most of the kids were autistic.

I never imagined myself as autistic, all my life I had been told "there's nothing wrong with you" "Straighten up and fly right, pull yourself together,snap out of it, stop feeling sorry for yourself, you know what you did, you know what you have done," were all repeated over and over and with plenty of punishment.

I had been accused of trying to insult, degrade, humiliate, mock, and otherwise distress my family in interactions as well as being considered completely willful and uncooperative. Imagine my surprise as I began to learn about autism! It was such a relief to learn that all those painful interactions and "whys" of my past were not, after all, "all my fault"

Suddenly the world began to make sense! I have been able to forgive myself and others for all the trauma and failures, after all nobody knew!


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orbweaver
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29 Sep 2022, 5:22 pm

I am late diagnosed, but I have *always* known I was ND because my whole childhood is basically a long narrative of being kicked out of various schools, being dragged around from clinician office to clinician office, the constant evaluations, being homeschooled after the school officials threatened to call Child Protective Services over my parents being unwilling to put me in special ed, friends' parents thinking I'm weird, losing friends in my teens because they wanted to socially climb, being seen as immature by my friends and eventually being left behind as they hit developmental/social/economic milestones I didn't hit, etc. Also, I was very aware of the difficulties I was having in K12, and reached a point where I was failing every class before I dropped out. My parents were openly discussing within earshot stuff that had happened at school and their meetings with the counselors and teachers. I could articulate feeling different from other children and not getting their games and whatnot, and being left out because I didn't understand what was going on, as early as 5 years old. I have literally never not known I was ND.

Plus my mom has been open with me my entire life about the fact that I was mildly speech delayed (didn't really become verbal until close to 4, then I never shut up again). My parents were trying to keep me from being diagnosed with anything (ND themselves and see me as normal, anti-authoritarian and saw clinicians as "The Man," thought I was just a misunderstood gifted kid, etc) and when I was an adult just let me have my old school records (which actually made my diagnosis very easy) and were glad to wash their hands of it.

My parents live in a dream world, where a lot of their assertions have never really been tested simply because they are buffered by privileges I have never enjoyed. There was more work for introverts when they were growing up, or even for that matter, for odd people. My mom could just be a housewife instead of dealing with her autism at work. They thought the schools were 100% of the reason for my problems and I'd do fine in the work world once I was out of school. They also came up under very very different labor conditions than I did, just having a job wasn't even half as socially cutthroat as it is now, where desperate people are always looking for dirt about their competition on Twitter.

Ironically, *socially* is the place I eventually caught up, they just wonder that I'm a messy, obsessive, very shy person who keeps their own counsel. But I am hardly ever thought autistic anymore unless the person is very, very familiar with autism.


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29 Sep 2022, 5:44 pm

I've been ignorant about autism, I didn't know what it is. I pretty much thought it was the same thing as Down syndrome.

I bumped into the term a couple of times in 2016 when I was reading comments about a famous software developer I read a book about. I watched a lot of his interviews as well. I was curious about some of the similar mannerisms we shared, social situations, and speech patterns. Then someone in comments mentioned they believe he may be autistic.

Another thing was a character in Adventure Time, I knew a lot of them were designed as inclusion puppets and represented specific groups or traits. The character that grabbed my attention was Lemongrab, his meltdowns were very similar to mine, many years ago, and other oddities. At the time on the wiki it was said that he was designed to represent an autistic person. Though here some said he was more OCD, and I have some of that too.

Those two things led me to look up what autism is, and I found it to accurately portray my social and communication difficulties. Did some of those online self-evaluations, then came here to ask for additional resources. This place was different back in 2016. I was directed to Tony Attwood's book, I read it, putting down bookmarks on most pages. Most paragraphs evoked a memory of some sort. I re-experienced a lot of my life while reading that book, but with a new understanding of those events. There was relief, then not so much. But in the end I just accepted it for what it is, and many of those memories I cannot recollect anymore, it's like they were completed and cleared from my mind. A closure of sorts, I guess.

Eventually I was able to find ways to live a reasonably normal life, picking opportunities recognizing my limitations.


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29 Sep 2022, 5:57 pm

Heard about it thought it might be me. I remember reading the book "Look Me In The Eye". And the first few pages of "The Curious Incident of the Dog in the Night-Time".
My son was first diagnosed as deaf, then "not deaf" then gifted, then gifted with speech disfluencies, then gifted with speech and ADHD and Autism. All along I thought he might be like me.
I am still not quite convinced that ADHD and Autism are really two different things, but rather different spots on the spectrum, or different variations of the same genetic encodings.
I was in 4th grade (age 9) when I was identified as odd. Then a bunch of doctors and tests. Then they called it dyslexic. Then gifted/dyslexic.
So basically - most of my life I was "not normal". Autism is just ONE MORE kind of "not normal".
I went to get help with my "odd" again in 2002 as an adult. This time they called it gifted and ADHD.
I am currently self-diagnosed with RDOS evidence for Autism. I may get an official diagnosis soon. I am on a waiting list at a big teaching hospital and e-mailed a doc who specializes in Autism Diagnosis just today.
Stay Tuned.


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Last edited by Fenn on 29 Sep 2022, 6:15 pm, edited 1 time in total.

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29 Sep 2022, 6:09 pm

I didn't have a chance to.
Only that I'm different. Just not knowing why.

And over 15+ years ago from where I came from, autistic means your classic case of nonverbal, unreasonably violent, dependent, low IQ, cannot be left alone, shouldn't be in public places type -- all of which I'm not.
I've only heard of the idea of an autistic that isn't all that when I got diagnosed.


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29 Sep 2022, 6:09 pm

I dated a lovely lady and she was diagnosed with aspergers syndrome, and when asking her what it was, she started describing traits she had, and only two traits she mentioned seemed different to how I do things, so I was puzzled what aspergers syndrome actually was. I half jokingly said when she said some traits I shared and I had said "Isn't that normal" ... "Maybe I am on the spectrum too?" She got me to sit one of those online test things and it said to see a psyciatrist, psycologist or a health professional".
Took me another two years of trying before I finally asked as I kept hitting mindblank every time I tried to ask at my doctors and back then I had to seen them regularly as my blood pressure was high and they wanted to monitor it (Was too low in previous years).

I am waiting to be assessed so it has been around five years from the date I first took that online test so I don't know yet if I am on the spectrum.



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29 Sep 2022, 6:37 pm

Deciding one day to search for "high verbal" "low spatial". That lead to NVLD and then autism. NVLD seemed a better fit,but I didn't dismiss autism as a possibility. It was then a very long , very frustrating, and fruitless struggle to get my then mental health team to acknowledge there was more going on than just SMI.

The breakthrough came after moving to the town I live in now, and seeing my new pdoc for the first team. My (s) daughter who was with me and had,at the time, 20 years experience working with those with dementia/mental illness/autism/learning disability,raised the question of autism.

The new pdoc listened and asked questions .He then said autism and schizophrenia were the most likely diagnoses. A referral letter came 2 weeks later. The dx of Asperger's 7 months later.



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29 Sep 2022, 7:58 pm

Nothing. If you had told me I could be autistic before my diagnosis with Asperger's as an adult, I would have told you to stick it where the sun don't shine, because back then I thought autistic people couldn't speak unless except for echoing other people's words and were trapped in their own bodies and terrified. I would see autistic people on TV occasionally, and they would always be crying, rocking, screaming, acting violent or just completely unaware of the world they were in. I thought they were all severely intellectually disabled and had to spend their lives in care homes or hospitals. Obviously, I had to forget every single thing I "knew" about autism, and so should everyone else who hasn't been educated about it after the 21st century.

I knew I had problems like bad anxiety and suffered from bullying and harassment from other teens my age, but I never thought it could be ASD-related. I was diagnosed with schizophrenia form disorder or whatever it was called in the early 90s and put on about 80 different medications that put my mind and body through a wringer. Oh how I hate the psychiatric "care" system for making me go through that.



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29 Sep 2022, 10:03 pm

Quote:
What Made You First Wonder If You Could Be Autistic?


When I was in high school I saw an episode of some reality TV series where one of the kids struggled with fractions and would also cover her ears whenever the room got too loud. I thought "Oh look, someone like me" and then the show was like "she suffers from autism spectrum disorder."
Me: 8-O



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30 Sep 2022, 4:30 am

My therapist as a teenager mentioned it to my dad at 15 but he forgot to tell my mum (he's likely to be on the spectrum). So that was the end of that.

Then when I had my son and then he was going through his diagonsis I asked my GP as one of my depression check ups saying I think there's something wrong with me. He said whatever is wrong with your son, I can grantee you have. So one my son got his, I then had to apply to get mine done. I got diagonses the day after my birthday so I can never forget it. :)



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30 Sep 2022, 8:45 am

I'd spent 15 years getting what I could from various self-help groups that never mentioned genetics at all. My sister was still distressed over our mother's quirks when she was dying, so I did another search on the symptoms. I found a half-page on Asperger's, and began to wonder if we were both Autistic about half way through the list. By the time I got to the end, I was sure.



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30 Sep 2022, 10:42 am

I was having a sensory meltdown in a brightly-lit shop.
I kept ranting to my daughter about how it felt.
She said "You know you're autistic, right?"

Apparently she always knew, and she thought I knew too.



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30 Sep 2022, 11:17 am

16 when I read Omni magazine my sister left in the litterbox. Article about Asperger's and I felt like it sounded familiar



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30 Sep 2022, 1:07 pm

I knew virtually nothing about Autism, then...

At the end of 2018/beginning of 2019 holiday season (when I was 64) we made the 700+ mile (1,100+ km) drive to visit my then 88-year old father. While there I was told that sometime during 2018 Dad had been visited by a young boy thought possibly to be Autistic and Dad observed that the kid was doing the same "weird" things I used to do—I must've made quite an impression on Dad because I would've been doing them in the late 1950s!

For some years I'd suspected there was some real difference between me and other people but I had no idea what it was. While I was skeptical (because I knew so little about Autism) it seemed appropriate, because of Dad's comments, to do a little reading on the Internet about Autism. And it fit me! So, I got my bride to read up about it on the Internet and she agreed, it fit me!

We were both ill-informed on the topic and we knew it. We weren't sure if we were right or not. And, assuming we were right, I couldn't tell if I was slightly Autistic or just almost Autistic. Then I found the Autism-Spectrum Quotient Test online. My score was in the range that indicated "significant Autistic traits". Then my bride took the test on my behalf, answering the questions the way she thought I should've answered them, and she got the same result: "significant Autistic traits".

That convinced me to seek an Adult Autism Assessment.

Without a formal assessment I wouldn't know if I was slightly Autistic or just almost Autistic and I wanted to know! Without a definitive answer I would forever wonder and, if I spoke about it, have felt it necessary to explain I wasn't sure.

Shortly before my 65th birthday I got the diagnosis Autism Spectrum Disorder, Level 1 (Mild) with a note that I also satisfied the criteria previously associated with Asperger's Syndrome.


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