So, You’ve Just Been Diagnosed: Please Learn from My Mistake!

I first learned that I have an Autism Spectrum Disorder (ASD) back in 2016 at the age of 53. At first I was skeptical, but I eventually came to see that my doubts were mostly grounded in my own ignorance regarding autism, and somewhat grounded in the fact that many autistic people have huge challenges that make my own seem quite trivial in comparison. That doesn’t mean that I don’t have an ASD, or that my autistic neurology doesn’t create significant challenges for me, but it does mean that I’ll probably never be the subject of any Oscar-winning movies.

For the record, I am also visually impaired, but I don’t need my books written in Braille. My eyeglasses work just fine.

In any case, the last two years of my life have been intense and overwhelming — not just for me but for my family as well — and in retrospect I think a lot of that chaos arose from a single assumption I’d made early on and which turned out to be false: that my medical diagnosis was some sort of credential that automatically entitled me to things like sympathy and respect from others.

I called it my “license to weird”. It was a joke, of course, but only partly so. In my mind I really thought I could just go around telling people that I was autistic and they would automatically know what that meant, accept it as true and subsequently adjust their perception of me in some sort of favorable direction. Maybe they would find me more likable, or maybe more understandable. Maybe they would find my irritability and frustration less irritating and frustrating.

Well, in the past two years I have learned the hard way that this is definitely not the case. Although folks differ widely in their responses, the general principles seem to be that almost nobody understands autism, lots of people flatly refuse to accept the diagnosis as correct or relevant, and telling people that I have an ASD is possibly even more likely to harm my reputation than to improve it.

At it turns out, my ASD diagnosis is really nothing like a “licence to weird”.

I hope that’s helpful!


Image Credit: succo on Pixabay

9 Comments

  1. And I thought it sucked that I didn’t find out until I was almost 30! As for how others see the diagnosis, my issue has been too many people saying I didn’t “act” like I had it and doubting my diagnosis, even though two psychologists and a psychiatrist have given the diagnosis.

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  2. My diagnosis didn’t come until I was 60, and of those who I tell fall into one of three camps: the “You don’t look autistic” camp; the “That’s what I’ve always suspected” camp; and the third camp seems to avoid me as much as possible as if autism is a communicable disease. Those who have suspected my condition are those who have known since my 20s or before.

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    1. I think I could use those same categories. Also, it was my ex-wife who first recognized my aspieishness (aspietude? aspects?). She’d been struggling with my rigid routines and learning obsessions and started looking things up online. “Hey, this is exactly what’s going on with you!” she said to me one day. “You have Asperger’s!” I told her “don’t be ridiculous. I feel emotions and empathy and I have a great sense of humor.”🤣🤣🤣

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      1. Yeah. When I learnt that I was on the Spectrum, my first reaction was to think it was a ridiculous notion, and I was determined to prove the experts wrong. I tried every online test available in the hope at least one would would give the desired result. None did. Not even remotely. They indicated I was even “more autistic” than what the professionals had described. It was only then that I started to research what autism really is. My only previous “experience” of autism was with the movie “Rain Man” and Dustin Hoffman’s character.

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  3. I made the same mistake telling people that I was autistic and thinking they would automatically know what that meant. No, they don’t. And I find it strange that most people don’t even ask what kind of support I need and whether there’s anything they could help. In part, this is also my mistake as I told people I’m autistic because I want to help raise awareness and they probably think I didn’t need help or support. Certainly, they’ve heard of it but I’m now quite certain they know nothing about supporting us. I’m just rather surprised that most people don’t think about offering any help or support at all.

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    1. I really like the way you articulate these issues. Yes, “how can I support you” is probably one of the most important questions I would want to be asked. It’s probably also one of the most important questions I should be asking others. It makes me nervous, though. I feel like I have very little I can offer anyone. What if they say something like, “I need you to give me one of your kidneys?” 😳

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