Hang around in autistic chat groups, or on Twitter, for even a short time, and you’ll find someone saying “I’ve known that I’m autistic for decades” or “I was diagnosed last year” followed swiftly by “…but sometimes I question myself. Like I’m appropriating something that isn’t mine, like I don’t really belong, like I’m not *properly* autistic.”
Wikipedia defines impostor syndrome in terms of doubting one’s accomplishments and having a persistent internalized fear of being exposed as a “fraud”. Whilst this is framed in reference to achievements and skills, the principle carries across easily to an autism diagnosis.
I wanted to summarise the reasons, that I can think of, that explain why this happens to people with an autism diagnosis. When I mention diagnosis below, I’m including “coming to a realisation that I’m autistic”. Access to formal diagnosis is by no means universal and can be difficult to access and/or be prohibitively expensive when it is available.
Firstly, consider what happens if you’ve been diagnosed later in life. You’ve done an awful lot of growing up, “finding yourself” and coming to accept how you are as a person in the absence of any knowledge of autism.
Imagine being told late in life that one of your biological parents is a direct descendent of a member of a royal family, or that you have a sibling whom you’ve never met, or something similar; it takes a while to sink in. As it is sinking in, you go through periods where you forget, and the “you” whom you know and understand, flips back to the “you” concept that you had immediately before you received the news.
So it can be with diagnosis. It doesn’t seem to matter how much of an “aha!” moment learning about autism was, or how perfectly everything now makes sense, or how much benefit you feel from arranging your life as far as is possible to “fit” your autistic profile an maximise your happiness and minimise your stresses, these moments still occur. “I’m just me – I’ve always been me. I’m neurotypical (surely) because the “me” I knew before assumed that they were neurotypical until ….”.
This isn’t helped by others telling us well-meaning but unhelpful things like “Ahh well, you haven’t changed in my eyes! You’re still you!”[1]
Secondly, as you adjust your life to avoid the stress caused when your particular and unique autistic profile gets rubbed up the wrong way by life in a neurotypical world, you (surprise!) start to feel far less stressed and troubled. Then, from that much more comfortable place, it’s easy to tell yourself “I could do that. And that. And I don’t need to avoid that. What am I playing at? Why am I constraining myself with all of these adjustments? I feel so much better than I did! Maybe I’m neurotypical after all! Maybe I’m even superhuman! Yes maybe I do stim, but maybe I’m just letting my quirks out! Maybe I took my diagnosis interview on a particularly anxious and overloaded-feeling day. Maybe I was misdiagnosed! Maybe I should just get over myself and start running around after other people’s needs again!”
The danger here is that if you do overload yourself with all of that stuff, at some future date you will realise that you’ve run out of spoons and, yes, you are autistic. At worst, you’ll be in Autistic Burnout – and nobody wants that.
Thirdly, you might unfortunately encounter statements of the type “You’re not as autistic as *me* / my child / my sibling / her second cousin”. These kinds of statements can hit people who may already have been struggling with the above, and who may have Rejection Sensitive Dysphoria, hard. They can tip people over an edge into the clutches of impostor syndrome. If you do encounter this kind of statement, remember the following:
- Autism is a spectrum, and the “spectrum” is not a linear one from “very autistic” to “just autistic enough to diagnose”. The spectrum is about the particular profile of an autistic person, which – very roughly – describes how they get on with life in a neurotypical world. All autistic people are 100% autistic.
- Autistic people form a heterogeneous set of unique individuals.
- Often, it’s difficult to separate the traits of autism from the symptoms of the several “co-morbid” conditions that often accompany it – even for professionals. So when you encounter statements like “You can’t be autistic because my friend is autistic and he …..” remember that it’s just like the statement “You can’t be human because my friend is human and she has blue eyes!”
- If it takes a team of highly trained experts to diagnose autism, how much should the opinion of a random stranger on the internet count if they think they can undiagnose you from 1000 miles away?
If I think of more reasons, I’ll come back and add them – but that’s it for now! These are the reasons that have occurred to me – because I’ve experienced them. I hope that reading this helps you give yourself the permission to be kind to yourself and give yourself the care that you need.
Alan By The Sea 