12:32am September 17, 2014

Terror of being diagnosed with something I couldn’t understand. (Long, has a tl;dr at the end.)

Psychotic was a word I could understand.  I wanted words I could understand.  I didn’t care if the words were true or not.  I only cared that the words sounded powerful, complete, an explanation of everything wrong with me.  Call me manic, I’ll be manic.  Call me multiple, I’ll be multiple.  Call me psychotic, I’ll be psychotic.  

But there were other words being used, far more often.  Developmentally disabled.  Idiot savant.  Autistic.  Severely complex developmental disability.  Pervasive developmental disorder.  Atypical autism.  Central nervous system disorder NOS with severe sensory and motor issues going back to early childhood.

Those words scared me.  They scared me because they did not map to anything in my brain.  Psychotic was a word I could understand.  Autistic was a word I could not understand.  My greatest fear was that whatever was wrong with me could not be understood, could not be named, had no label that I would ever be able to comprehend.  So when I heard all these labels that I couldn’t comprehend, it was like my worst fears coming true.

So I tried really hard to be the things I could understand.  I thought maybe if I tried hard enough for long enough it would become second nature and become a reality.  Someone had said “People become what they pretend to be,” and I thought maybe if I just pretended enough, I’d become something I could understand.

It didn’t happen.  If anything, it just made my autism more obvious.  I remember walking into appointments with regular medical doctors — like a proctologist, once — and having them ask my parents if I was autistic.  They hadn’t seen my records.  They just assumed I was autistic based on my appearance and behavior.  

They were always shocked when they realized I could talk.  That, right there, should have told me a lot, but I didn’t understand that the way I looked to myself was not the way I looked to everyone else.  That, too, should have told me a lot.  But I didn’t know enough about autism to know how typical of an autistic person I was.

Over the years, I did read things about autism.  I read Donna Williams.  I read Temple Grandin.  I identified a lot with Donna Williams and a little with Temple Grandin.  But reading them didn’t tell me what autism was.  Autism was not a concept I could grasp easily.  

Especially because when I read books by autistic people, they always made sense to me, however different from me they might.  But when I read books by autism ‘experts’ they made no sense at all.  Because all the ‘experts’ were doing was looking at autistic people, making wild guesses about why we did the things we did, and then designing experiments that would confirm their wild guesses so they could get published.  And then they’d write books they could sell.  This was not a good way to get a good understanding of autism.  Especially when I didn’t know how I looked on the outside, so I didn’t know that the way the ‘experts’ saw autistic people, and the way many doctors saw me, were one and the same.

So to me, these words… autism, developmental disability, idiot savant, they scared me.  They terrified me.  Because to me they were confirmation that whatever was wrong with me had no name.  I know this makes no sense.  Because autism is a name, and so are all the rest of those words.  But to me, autism was an empty word.  It wasn’t a word that had meaning.  So if it had no meaning, then it wasn’t a real diagnosis.

Plus, the only other people I met who were openly described as autistic were almost completely nonverbal and had been diagnosed since they were little kids, and been in the special ed system ever since.  The first person I met who was called autistic was a boy who did almost nothing all day except rock and repeat the same syllable over and over while thumping his chin.  Occasionally he would grab you by the hand and lead you in circles for a bit and then sit down and rock again.  And even someone like him, the staff said he wasn’t autistic because he grabbed people’s hands and that was too social to be autistic.  Even though grabbing people’s hands is actually something that has been described in the autism literature since autism literature has existed.  Nobody said these staff knew anything about autism either.  But if they were saying that he wasn’t autistic because he grabbed people’s hands which made him too social to be autistic, then there was no way I could be autistic.  That was how many people thought in the nineties.

But then I saw my first three-dimensional person.  Usually people were like flat cardboard cutouts.  This person was like a living breathing human being for the first time in my life.  She was autistic.  We got along great.  This made me start wondering if the diagnosis was accurate after all.  Even if I still couldn’t tell what autism was supposed to mean.

But I have to keep coming back to this:  The terror.  The utter, absolute terror.  That what was happening to me was unnamed and unnameable.

Because it wasn’t just that I’d been born this way.  It was that I was losing ground.  It was like a secret that only I was fully aware of.  People had started noticing, but they thought they could patch me up, fix me, set me on the right track and I’d go back to being a high achiever.  I knew this could never happen, because I was running as fast as I could and was still moving backwards.

I went to an autism conference when I was nineteen and it changed my life.  I ran outside in the middle of the night, terrified that people would know that I wasn’t supposed to be there, that I was too atypical an autistic person to belong there.  I didn’t know where to go, and I didn’t know I was being followed.  Then I got stuck.

I’d been getting stuck a lot.  That was the catatonia bit.  I’d freeze.  Or I’d only be able to move in slow motion.  This was a little of both.  Freeze for a few minutes.  Slow motion for a few minutes.  Freeze for a few minutes.  Slow motion for a few minutes.

Then a voice from beside me.  “Wow.  I freeze too, but I’ve never seen it from the outside before.”

And then a long explanation of a movement disorder that was affecting lots of people in the autistic community.  They were corresponding with Lorna Wing, who was doing research into it.  There were some papers out that I needed to read.  But I never got those papers, at least not at the conference.  That got lost amid a bunch of different crises.

By the next year, though, Lorna Wing and Amitta Shah had published “Catatonia in Autistic Spectrum Disorders” in the British Journal of Psychiatry.  And the moment it was faxed to my psychiatrist, I was diagnosed with autistic catatonia.  I was an absolutely textbook case.

And now that I was beginning to understand autism from the inside.  And now that I was beginning to understand that I had a progressive movement disorder that other autistic people got too.  I started being able to accept words like autism in my life.  I was able to accept when my diagnosis was changed from PDDNOS to autistic disorder, and was able to accept the explanations of why I’d been stuck into PDDNOS in the first place — and it wasn’t because my autism was all that atypical.

Autism wasn’t an empty word anymore.  Catatonia was not an empty word anymore.  Idiot savant wasn’t an empty word anymore.  Developmental disability wasn’t an empty word anymore.  These words had actual meanings.  I think the hardest word for me was “developmental”.  That one took me the longest to understand.  Even now, when I see that word, my mind sometimes draws a blank.  But I do understand the basic idea now.

This, by the way, is why I believe in self-diagnosis.  I wasn’t self-diagnosed.  I didn’t know what autism was when I was diagnosed with autism.  That’s supposed to make my experience better than that of someone who self-diagnosed?  Bullshit.  I got nothing out of my autism diagnosis until I went through the same research and self-education process that people go through when they self-diagnose.  Being diagnosed by a doctor may have helped me get services.  Which is huge, because I can’t take care of myself and I desperately need those services.  But I had to go on my own journey of self-understanding before I could accept the word autism into my life, and understand what it meant.

If I hadn’t gone through that process.  If I hadn’t done all the research that people who self-diagnose also do.  Then I would still be clinging to labels that didn’t fit me, because they were less scary than a label that fit but that I couldn’t understand.  And that would have eventually become a disaster.

TL;DR:  When I was losing skills as a teenager – something that happens to between 1/3 and 1/6 of autistic people – I had a terror that whatever was happening to me was deeply incomprehensible, and ultimately impossible to diagnose.  This terror led me to embrace misdiagnoses that I could understand, and reject accurate diagnoses that I could not understand.  Only after I really began to understand autism, and especially autistic catatonia, could I accept my autism diagnosis.  And the process I went through to come to this acceptance is so much like the process of self-diagnosis, that I think self-diagnosis can often be more valuable than professional diagnosis, at least in the area of self-understanding.  (Professional diagnosis is more useful for services, which I also badly needed, so I am very glad I have a childhood diagnosis of autism.  It saved my life.  But without the process of gaining self-understanding through doing my own research, the diagnosis would have done me little other good.)

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