Poll about how you got your diagnosis...

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Hi,
I'm curious about how you guys got your diagnosis.....
I hear many people first find out themselves they could have AS and then pursue a diagnosis and get it while others get diagnosed totally out of the blue. like taken to an doc by parents or friends or going to doc for other problems "sort of unrelated" to AS and suddenly get a diagnosis of AS.

I'm curious because I kind of don't get how someone with AS could even notice they have AS, particularly if it's either very mild or very severe. Like if someone lacks theory of mind, I can't see how he could even know he doesn't have it because it's simply missing! it's like a color blind suddenly feeling sad about not seeing certain colors. that shouldn't happen because he hasn't ever seen those colors to miss them..... maybe I'm thinking a bit too simple here and I could be wrong though. Maybe one can sense some of the symptoms other than lack of theory of mind or something......


Thanks for reading.

cheerz
omid

I'd never even heard of AS before I got my diagnosis. I was in the second or third grade at the time though...

My parents were the ones who suspected something wasn't right with me. They had me tested for autism, but I didn't know anything about until my junior year. That's when I discovered I actually had an autism spectrum disorder.

Someone color blind maybe won't be sad for not seeing certain colors but will realize he/she can't see them when he/she won't be able to distinguish red light from green and other people will constantly tell him/her to follow the road rules. He/she will want to know why it is so clear to other people and not for him/her.

People with AS might be "blind" to the theory of mind but are not stupid. Whatever we have it mild or severe (moderate in my case, due to sensory issues) we will realize we just can't follow the social rules other people constantly remind us about because we can't see the "signs" other people see. So we start to search for a reason. "Whats wrong with me?" Then one day we hear about Asperger, read about it and realize it is all about us and explains our whole life.

Also. Some people have no choice but to suspect because otherwise they wouldn't get a diagnosis at all. Not every country got autism specialists in every medical centre. For example I suspected there is something wrong with me since I was a kid and I was visiting lots of psychologists but noone could explain or help me. I got diagnosed this year, after reading about AS and going to an autism specialist, not regular psychologist. And apparently it was clear that I have it. I could be diagnosed years ago if doctors I was visiting were better educated. But they simply had no clue.

I think I've only mentioned maybe 901 times that I had no real clue about what Asperger's really was until a doctor diagnosed me with it. Doing so had probably literally saved my life.

I was told. I always knew I was different and I knew that something was off with me but I had no idea what. I also had no real knowledge of AS. But once I was told by someone who knew very well what he was looking at I researched it thoroughly as any ASD person would and that confirmed it.

Your 40 like me when did you get you diagnosis.

I only got my last year and I was the one who started to suspect I was on the spectrum.

I have struggled with social interactions my whole life, but I always blamed it on natural shyness, lack of practice, and low self-esteem due to a speech impediment. I also struggled in many other areas but I couldn't explain why. Yes, I asked "what is wrong with me, why can't I do this?" many times, but the possibility of Asperger's/Autism never crossed my mind. I tried to fix myself by exposing myself to social interactions with little result.

During the last year I have been working at a very bright and noisy office and it was driving me nuts. The lights was so bright and the noise so loud and it never stopped. The lights were hurting my eyes and the noise was drilling itself into my head. I was getting more and more anxious and depressed for every day until I had a full-blown anxiety attack. I went to see a therapist to help with my coping skills.

At the end of the initial therapy session, he said "We try to avoid putting labels on people, but sometimes we just have to do it. You have what is called Asperger's Syndrome". My first reaction was that he must be out of his mind, but when I got home and started to read about it I realized that he was right. Apparently, I'm a rather obvious case. It probably helped the diagnosis that I was blatantly stimming during the whole session.

I'd been telling my mental health team I thought I may have AS for 2-3 years before a new psyche picked up that I had it. She was only seeing me to sign me off this team onto a another less specialised team. As soon as I was diagnosed I was kicked off the adult autism team and put on this other team so its had no benefit to me whatsoever in terms of receiving therapy.

I was diagnosed with "regular" Autism when I was 4, but I was re-diagnosed with Aspergers Syndrome when I was 13.

How about 'other.' I was a kid when I was seeing a psychologist and I don't think my mom was looking for any label. I wasn't looking for one either. Then she referred us to a psychiatrist and he diagnosed me with AS after many sessions with him. I don't even remember being told about it when I was first diagnosed. Mom told me later about it and I felt broken. I wasn't ready to hear it.

I also don't get either how someone would pick up they have it after reading about it. How would they know they miss social cues and have different communication or poor theory of mind or can't read people? Maybe the only thing they may notice is need for routine and dislike change and not liking touch or having strong interest and they may think "Oh that's not normal?" They may also read aspies tend to be target for bullies and tend to not have friends and have problems fitting in and I can see an aspie relating to that and knowing they may have it. How would they also know they have troubles understanding feelings or recognizing their own? My mom had to figure everything out because I wouldn't tell her because I didn't know. I couldn't tell her what my troubles were. I only could tell her how kids were treating me and what they did and I did talk about how I was treated different. Parents have to play detective. But I felt I was fine then and it was the other kids who needed to change and treat me better and the adults too and it wouldn't have occurred to me to seek help and see someone or get therapy like in occupational or get group therapy. I was a kid. Perhaps it's different for adults and I am only speaking from a child's perspective. Maybe the milder you are, the harder it will be for you to recognize you have it and get tested for it? Today I still have troubles explaining what my issues are and how I am affected. I had this same issue in my childhood and I kept being told I am normal but I felt something was different and didn't know what was wrong.

I actually wasn't sure if I had it or not when I first mentioned it to my community psychiatric nurse. I also told him I thought I might have a personality disorder i.e. BPD, schitzotypal or schitzoid disorder at one point or another but was ignored every time. I never really found out why he didn't seem to give a s**t, despite me having seen him for over 8 years. I saw at least 6 different psyches at one point or another, just one off visits, and I mentioned it to to at least one or two and they all shrugged it off too. It was only when I saw the last psyche that she noticed straight away I had AS.

Exactly the same with me.

doctors didnt tell me out of the blue persay, i had evaluations done by 3 different doctors, but to my father (who found out first) it was very random, especially because no one told us they were evaluating for autism.

I suspected myself of Aspergers and I went to an neuropsychiatrist and then to an psychologist that gave me the ADOS module 4. I scored 8 and it is above cutoff, then I meet criteria for ASD.

When I was 17 or so I discovered some literature on Asperger's in a drawer at home. I asked my mum who it was for and she absolutely refused to tell me. It got quite heated, but she refused to back down.

I read the literature of course and decided while I fitted some criteria, I didn't fit others. I also probably assumed Asperger's was mainly a male thing, and I'm female. So I put it to the back of my mind and got on with my life (or, maybe more accurately, didn't get on with it but whatever). I put my social problems down to introversion, shyness and depression instead.

Fast forward 20 years and some reason I bring up that episode with a mental health professional. Can't remember how it started. All I know is that this was the first (and unfortunately last) time I saw this woman and I found myself opening up more than usual. In the past I'd tended to clam up with counsellors, sometimes to the point of going totally mute. Even when I tried to make an effort, it was hard-going: one therapist described getting info out me as "like getting blood out of a stone", and I was actually trying to talk!

Anyway, long story short is I got referred to an adult autism service and I got my diagnosis. Wasn't really actively pursuing it, but I had enough doubts about myself to decide to accept the referral and be formally assessed.