People's reactions to adult autism

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Hi everybody!

I've just disclosed to some of my relatives at a Christmas gathering that I've been diagnosed with ASD Level 1 this year, and their reactions were a little unexpected to me. I found that they didn't know what it was, which put me in the position of having to explain Asperger's syndrome on the spot! I wasn't really prepared for this. They seemed to have the most trouble understanding that it was the same thing as autism. It's funny because I have relatives who are healthcare professionals and I thought they might be a bit more across the whole thing. Anyway, given their blank kind of reaction I soon realised I was a little uncomfortable explaining the whole thing in detail. How I came to work out my diagnosis (to put things in context I'm 50 and a woman, that's why they had trouble swallowing the concept of it being autism) was maybe a little uncomfortable of a subject for Christmas. Not saying I got a bad reaction, but I felt a little uncomfortable afterwards and I'm not sure what they made of it.

I wonder if the solution might be to have a short spiel down pat about what ASD Level 1 is. I might have to work on this. Has anyone else had any experiences like this or any thoughts?

Yes, that sounds familiar.
My parents especially seemed to be quite invested in seeing me as "normal" and were not too accepting of the notion that I might have a neurodevelopmental disorder.
You are right, it is mainly ignorance of the various manifestations of autism. Now I'm wary of who I tell of my diagnosis, because it inevitably requires some explanation, and it's not something that can be properly explained succinctly.

Plus maybe it's a bit because of my parents' own background - they grew up in a time when it was important to be seen as normal and there was more stigma in being different in any way viewed as sub-normal. In those days autism often got lumped in with intellectual disability, so from their point of view, as long as I was intellectually able and getting by in school, by definition there could be nothing wrong with me.
Since a lot of my struggles have happened in adult life since I left home, they probably weren't too aware of the issues I'd been having which led to the diagnosis.

I've found its extremely difficult to get neurotypicals to understand what living with autism is like. Even people who aknowledge rarely understand what it actually means.

When I told my father I was going to be assessed I gave him some links to look at it . I hoped he'd supply some info. I abandoned that when he said he could see nothing related to me re autism.

He knows I've been diagnosed but has never said anything .

Yes, I was recently diagnosed as well and I have actually considered memorizing the the diagnostic criteria and reciting them verbatim if someone asks me what ASD is. Probably not the best idea, but I am just not very good at telling other people how my experiences feel to me. So I'm interested in strategies also. It does seem a little unfair that we are expected to be good at communicating about our communication disorder.

Last edited by twistytreesnake on 21 Dec 2020, 10:46 am, edited 1 time in total.

A lot of symptomology in this: but I was born with LF ASC (off memory), Kanner-type autism, and my situation was the opposite: I was targeted, gang stalked by my oldest brother who was a full blown psychopath since I was 6, he had weapons too, when I was more severely autistic, till about age 10 - even though besides that I had ASD - I had a good childhood, looking back , I remember when me and my childhood friend made a toilet out of a pipe and weed in it together and I went for walk with next door neibour with Freddy the dog every weekend in country side, educational development is another thing entirely. I'm almost sure, my dad and brothers chaotic bullying behaviour at home was the reason I developed schizoid tendencies later on and I know what your thinking - isn't this what all brothers do... No! This person was dangerous, full blown phyco. At this point in my development though, I had yet to acknowledge peoples existence - interpersonally connect - because of my ASD, and I continued to have some Kanner-autism symptoms till age 15 - severe sensory sensitivities/sensory processing issues and anxiety, non-verbality etc, with relatively good cognitive abilities however.

Mum, was understanding when I talked to her about my childhood/teenage hood hallucinations, sensory sensitivities, reasons for hyper-activity, hyper focus, interests, anxiety, schizoid type - experiences' and what happened when I was child, and 'all the other stuff', she was the person who took me to extensive speech/auditory learning therapy when I was a child (that did not initially work) before I knew I existed so she probably already knew, but it turns out I found out recently I was indirectly diagnosed for disorganised schizophrenia when I was teenager.

Nobody tells paraplegics they just need to try harder to walk.

You have not been to a Fundie church revival meeting, have you?

I have not been assessed yet, but when my Mum mentions it to people in conversation (I have said not to but she does not think as in conversations people can be manipulative or nosey and she will try to defend me).
But anyway. When I have or she has mentioned that I am waiting to be assessed and have had a hard time and can't work at the moment etc, their reactions are actually fairly unexpected and it is plain obvious that they know nothing about autism... But to be fair, neither did I.

One school teacher who visited who teaches in one of the largest schools in the area which is two or three times the school I went to and that was big, said "You can't be autistic. Autistic people need wheelchairs".
I thought to myself how many people she had taught who were on the spectrum and she did not know due to her lack of knowledge. And she is an intelligent person and she has worked in her job for around 25 to 30 years, so she must have taught 30 to 50 thousand children at a guess within that time? At least 20 thousand during her teaching career so far?
And so I would say that it really goes to show how so many children slip through the net and have one hell of an aweful time in school. (And I am not saying that school was all bad as many teachers were lovely and many pupils were lovely too but I was bullied... But what I am saying is that the enviroment of school life was the torturous bit for me as I do not like having to cope with crowds and I would stay outside in the rain rather then be in a crowded hall with kids screaming and running around. That hall was torture! I needed to be on my own and schools do not accomodate for this).

Diamondgirl, I was diagnosed as ASD-1 at age 64 in 2019. Due to geographic separation and the pandemic I have had little personal interaction with my family since then but my impression, so far, is they just consider my diagnosis a curious bit of trivia. They thought I was odd before the diagnosis. Now a doctor has agreed with them. But I'm still the same odd guy my family has known for decades and my diagnosis does not really require any action on their part.

DSM-5 covers a lot of territory with the Autism Spectrum and the old Asperger's Syndrome diagnosis might be the clearer reference point. To calibrate things, maybe you could borrow from Hans Asperger's quote and say you have a dash of Autism?

And, depending upon your sense of humor, you could just say "Like [famous character] in [famous show]." Sheldon Cooper and Amy Farrah Fowler from The Big Bang Theory are obvious choices though I'd personally lean toward Newt Scamander from the Fantastic Beasts franchise (but clarify to any particularly naive relatives that you aren't a wizard!).

My bride, on the other hand, has learned a bit more about ASD-1 than the rest of my family. She helped me research autism and to conclude that I might be autistic. But, she knew me before the diagnosis and I'm pretty much the same guy after the diagnosis...but every once in awhile she now gets to hear me say "I have a doctor's note for that!"

If there's one Aspie in a family, there are probably others, and some will be trying hard to blend in.

Well I mean my sister thought I had autism before I ever found out about it.

That's the thing. Yet, people tell us we need to try harder to be like them.

I have had that sort of thing through most of my life and I don't know if I am on the spectrum or not.
What I really found annoying is that I could be heavily criticized for something when someone else walks in who does worse then I have been criticized for and so I say "What about him then?" and I get told "He is allowed to because he is "One of the boys". I never did get their logic.
It seems that whatever I did to try to fit in was at odds to what they wanted somehow, so eventually I gave up and spent a life as a loner. I was a loner before but so many have tried to make me fit in, but somehow they do not appreciate who I am and keep wanting to change me? Why? No matter how hard I try I can not be anyone else! I am me!

The good thing is that the last place I worked I was appreciated for my skills, so that they let me do my own thing on my own terms because I could then really help them perform, but the times when everyone has to work together in the same place I find that I get picked on and pushed out.
So as long as there are tasks that a single person needs to do seperate from a group I would usually do well in that.

Last edited by Mountain Goat on 22 Dec 2020, 1:05 pm, edited 1 time in total.

But, it turns out that those with Parkinson's can just try harder to walk. The body's automatic circuits have quit, but can be overridden by conscious guidance of the feet.
However, "harder" is not always the right image. There's also work smarter, or, in our cases, work around.

My experiences are that I often work around to find a way that I can do the tasks and this is often tackling the task from a different angle. But somehow others do not see why I do things like this and say "You're doing it wrong!"

One example was when I worked on the railway we hat to life buckeye couplings before we were allowed to work engine and coaches, and we were not allowed to use the special tool which was only an angled bar, but would habe made the job much easier.
Now my upper body strength was weak especially my arms, but because I was a cyclist I had very strong muscular legs. So my way to lift it was different to others and though the guy teaching us was trying to have me do it the "Official" way, he had to conceed with me and when others watched me do it they wanted to know how I had done it without using my arm to support the coupling in the raised position to slide the pin in! (I found I could swing it up but I could not hold it with my arm while putting the pin in. All I did was to use my leg muscles to push my body to hold it up and lean on it and I had both hands free to slide the pin in. Others tried it my way and did not have the leg strength to lean and push into it to hold it up... But for me, I found it easier.

But I have always had to think of different ways to do things. Though the example above was nothing to do with ones mental ability, I have always mentally invented ways to cover for my difference in thought. A good example is the way I do maths where I visualize patters of dots to do mental arithmatic as I can't add up or subtract etc in my inner deep thinking picture like brain... But I can visualize patterns. So by storing the patterns and recalling the patterns into my outer mind which can do the metal arithmatic if the numbers are kept simple, I am able to do it.
Another example is how I avoid "Mindblank" being a problem. I talk around rather then talking direct and though I use a great many words, I will keep changing the subject until I eventually talk round and back to the origional statement that I was going to say... Because if I tried to talk in a direct manner, I would hit mindblank and loose everything that I was going to say... So my mind works by retaining a "Seed" of a gist of where I want to aim to talk towards, but I will keep changing the subject to get to the "Seed" and open it from a totally different angle. The "Seed" is the answer statement which I can't let my mind touch on it to grow it into word form until I have reached it in an indirect way. If I mentally try to reach it dead on I hit mindblank and will habe dropped the "Seed" of thought and will have a wall of nothing. My mind will just stop! Nothing! Not a sausage!