Acquired Autism? No, Thanks; I Prefer My Diagnosis To Actually Exist.

Say you grow up with two people. Person A was diagnosed with Asperger’s before you met zie. Zie has always had the hand-waving, the aversion to eye contact, the splinter interests and skills, and the slight confusion where small talk is concerned. Person B was essentially neurotypical until sometime in early adulthood. Sa now flaps sy hands when happy, hides sy head in hoods or under arms when confused or overwhelmed, and can’t seem to answer simple questions like “How’s your day going?” in socially acceptable ways. A and B get overstimulated at about the same rate, which is twice as fast as B’s former rate. While you may always be a little bit confused or irritated by A’s mannerisms, you’ve always known zie to be like that. When you hang out with B, though, even though sy mannerisms are now similar to A’s, you find yourself thinking Come on, B, why can’t you be normal like you used to be? If you’re a particularly blunt person, you might find yourself actually saying that to B’s face. Repeatedly.

Of course, if you meet both of these people in adulthood, it doesn’t matter who grew up neurotypically; you’ll probably lump us both together as Aspies or socially awkward people. You might ask us how old we each were when we were diagnosed, if we ever were, but knowing the answers is merely an exercise in intellectual curiosity. You could find yourself wondering why we can’t just act ‘normally’ in certain situations, but you probably don’t really expect us to since you’ve never seen us act normally in those situations.

I am Person B. I grew up neurotypically, but some sort of as-yet-unexplained brain crisis several years ago left me with memory problems, slight cognitive limitations, a fair amount of social confusion, and the aforementioned flapping & hiding mannerisms. I remember the right answers to social situations, even if I don’t really understand them anymore, but that’s all from my childhood. I respond as a twelve-year-old to adult social situations. I get overstimulated easily, but despite knowing when I need to withdraw, my neurotypical history means people around me don’t believe that I’m in distress and try to force my continued participation to the point of a sensory meltdown. My brain and body overreact to all sorts of stimuli – I can hear electricity, I am physically ill with less than seven hours of sleep, my old alcohol tolerance is completely shot, and light touch (or even air blowing over my skin) makes me want to scream.

One doctor tried to tell me that I have acquired autism ‘acquired autism’, but (medical definitions aside) having that label applied to me feels like horrid appropriation. Yes, I share many characteristics with Aspies now, and I can have meaningful conversations about symptom management and social difficulties with that community, but that doesn’t mean it’s the right diagnosis for me. I’m glad “acquired autism” isn’t actually a diagnosis, because I’d have to argue that it just doesn’t fit, but my complete lack of a diagnosis isn’t exactly helpful. For one, it makes registering with school disability services a nightmare and a half. Communicating my unexpected set of symptoms to new doctors always ends in either a misdiagnosis or complete confusion on their part. The majority of my family still believes that I’m faking it all, or that I could get better if I just tried hard enough, because only a diagnosis can validate symptoms, doncha know. My social life is practically nonexistent; many of my long-time friends can’t handle the change in me, and making new friends isn’t exactly a skill I have when social situations can literally drive me into hiding in any way possible.

So, friends and readers with formally diagnosed AS, ASD, and anything else alphabetical: I find myself sometimes a little bit jealous of what seems to be your magical ability to make medical professionals and laypeople alike understand that you’re different because of something recognized and quantifiable. All you Persons A have your own struggles, which are no less than my Person B issues, and I’m sure some of you have concerns that could be solved by removing the label of your diagnosis. No matter our mutual jealousy, though, it’s with you that I find friendships and acceptance.

Thank you for being awesome, friends. Say, could you drop in on some doctors and teach them a thing or two?

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One thought on “Acquired Autism? No, Thanks; I Prefer My Diagnosis To Actually Exist.

  1. When you were describing the hypothetical person A and person B I was expecting you to say person B was “faking it”. I want you to know that I was fully prepared to leave you a painfully polite but secretly extremely angry reply if you did. Turns out person B is you, so that angry reply doesn’t need to happen. I don’t like getting into overly polite arguments, but I would have if someone tried to say you were “faking it”.

    Although my circumstances are completely different, I too have experienced sudden and prolonged symptoms that look like something I have no history of and tests show I don’t have. A few years ago, my entire body would shake so badly I couldn’t feed myself. It was extremely embarrassing and scary. It would start in my arm and slowly spread to the rest of my body. My family and I thought I was having seizures but all the tests came back negative. This went on every day for over a year and then just as suddenly as it showed up, the shaking just stopped. I still have no clue what caused it, but I swear it’s not “anxiety” like the neurologist told me. Anxiety didn’t cause me to struggle to even feed myself lunch every day.

    All this is to say that I believe you. I believe you completely and if I knew them in real life, anyone who tried to tell me otherwise would find me an increasingly unpleasant person to be around. The brain is a delicate balance of chemicals and proteins and such. Those chemicals and proteins can change and the brain changes with it. Why should that be so difficult for people to understand? Just because something doesn’t have a name and you don’t know what it is yet doesn’t mean it doesn’t exist.

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