My diagnosis story

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Its now 17 years since I was diagnosed with Aspergers Syndrome, and I thought I'd tell my story.

Back in 2005, aged 14, I was getting harassed by certain teachers at school, which was endorsed by my parents. It was eventually revealed that I had an appointment with a doctor at a clinic I had been to when I was much younger. I managed to find the telephone number of this clinic in the phone book and cancelled the appointment. A few days later my Mother arrived at school to drag me to this clinic. I refused and tried to stand up for myself but was dragged kicking and screaming to the clinic. I refused to go in, but the consultant psychiatrist came outside and somehow persuaded me to come in.

After spending an hour trying not to cry as my parents tried to humiliate me by explaining everything they don't like about me, the psychiatrist diagnosed Aspergers Syndrome. The psychiatrist wanted to tell my school this, but despite me refusing several times, I eventually gave in to get them to shut up. I was referred to a "therapist" which consisted mostly of dictating how I must live my life now.

Not once did anyone stop to tell me what Aspergers Syndrome actually is. I was left to look it up on the internet.

I was then subjected to more harassment from teachers and family, as I could no longer be seen as just 'me', but had to conform to what they thought an Aspergers patient should be.

In 2006, aged 15, I developed symptoms of depression; regularly crying and thinking of suicide. In 2011, age 20, I went to see a doctor and started anti depressants, which I continued taking for a decade. In 2018, aged 27, a new doctor I saw recommended seeing a therapist who specialised in autism, rather than just having tablets.

In 2019, 14 years after I was diagnosed, I found a therapist who specialises in Autism. This was very good, and helped at the time, but cost me nearly £1000. The therapist then packed in her business due to covid-19 and the therapy came to a rather abrupt end. A year later my doctor sacked me as a patient and I was forced to give up the anti depressants. Unfortunately doctors are rather few and far between in my country, so I didn't bother trying to find a new one.

And here I am in 2022. I haven't had a job in over a decade. I have hardly anyone to go out and talk to, and spend most of my time either feeling suicidal, or wishing for a cure for Aspergers Syndrome. It took me several years to acknowledge that the psychiatrist was probably correct in his diagnosis, and even then, I never really came to terms with it. Had I not been diagnosed, it wouldn't have changed the AS, but I can't help but wonder; Would I have coped better if it had been done in a more dignified way?

Undoubtedly it would. What you have described is a deeply unpleasant experience, with no explanation, no proper consent and being given a label rather than any useful information on how you process and how to find and use your strong points

It sounds like you have come to see "experts" as possibly less expert than they think.

Here is a free pdf booklet called "Aspergers - An Intentional Life" that describes some of what makes us unlikable (especially as children)

http://christianpioneer.com/blogarchiev ... e_2017.pdf

That you have been able to overcome the "help" you received when you were younger is a testimony that we are able to improve our skill development and management abilities.

I would suggest that you consider yourself embarking on a process of discovery. If you have been unable to hold a job, you might want to experiment with an hour or two of volunteer work once a week. That might help you build some experience to perhaps in the future try a part time job.

I do not do well with people in general, but found that jobs where people avoid you like being a janitor or working third shift help to minimize such contact.

Experimentation will be the key to making progress. Even if you have a failure, it can be helpful to consider how things went wrong and what might be done differently for the next experiment.

Oh I'm sorry you had to go through all that. I'm not diagnosed myself but when I was 14-15 back in the 90s, I don't think anyone had a clue what Aspergers was, when I was little I was diagnosed as ADD. I remember my father constantly shouting at me during my teen years, to stop this, stop that, act better etc.. . I was pushed into sports, which just led me to be bullied even more.

I've wondered a few times, if I had been DX'd in High school if my parents would of sent me to some kind of a therapy to make me "Normal". Which I might of F'd me up even more then I already am.

That is a distressing story filled with emotional pain. It sounds as if you got all the trauma but without anybody actually reaching you and giving deep explanations, simply making demands. I got a similar upbringing back in the day when nobody knew about autism. I got punished, shamed, mocked, bullied a lot. The best thing that happened to me was when one therapist finally figured out that I do not process using talk or visual/real time discussions, lectures, tv, movies, etc but that I do my best understanding and learning and self expression in writing. This was my 4th try at therapy. I got assigned to read and write as part of my emotional homework. I found out that I had no self assertive communication skills, and the therapist was able to show me new ways to recognize if I was being manipulated, guilted, intimidated, used etc and taught me how to say no, how to set boundaries, and how to resist other people's demands and attempts to control me by using healthier communication. I had not learned healthy communication in my messed up home growing up. Finding that right therapist was the best thing that happened to me . I think it saved my life and my sanity. I did not learn about my autism until almost 40 years later, but that gave me the final self understanding that I needed to understand what had been happening all those years when I could not explain it or understand it and kept trying and failing and getting punished. What a relief. Please don't give up looking for new tools to use to live a better life. I had to have help from an outsider who could help me see what I had been missing, and to help me find the new choices I could make in my life instead of being stuck in the same unhealthy patterns I grew up with. Sending best wishes for things to get better as you find your way from here.

You said you only recently started to accept that the diagnosis was correct and weren’t convinced for a while. Do you think there may be a valid reason for this? Based on what you wrote, it sounds like it was handled in a very abusive and underhanded way. The things that stood out to me were how your parents “endorsed” the mistreatment from your teachers and that you “tried not to cry while your parents sat there and told the doctor everything they don’t like” about you. I don’t know the full story but I wonder if there’s more to it regarding your relationship with your parents. Were you constantly criticized and made to feel you could do nothing right? This alone is extremely emotionally damaging weather you have ASD or not. You also sound like you have a lot PTSD going on based on what you wrote. This could also mimic autism symptoms. Even if you really DO have Aspergers, this type of psychological abuse can make symptoms way worse then they otherwise would have been.

Thanks for the replies.

I left school when I was 16 and went to college, which was a much needed fresh start. I did feel very lonely and depressed during this time but it was somewhat made up for by the fact that I enjoyed the college course and was very interested in the subject I studied (electronic engineering). I think it was after this that I started to properly acknowledge that I do indeed have Aspergers Syndrome.

I don't think I ever really disputed it as such, it was just that it was handled in such a way that the diagnostic process caused more problems than the condition itself (at the time).

I do appear to have PTSD symptoms. I think some of this might have come from the diagnostic process itself, but also from just the fact that us AS people have a general difficulty coping with the world.