8:41am February 6, 2015

Susan Boyle doesn’t need headcanon to be autistic.

I have to admit I saw something familiar about her from the beginning. Specifically, things I often see in autistic women. It’s not the what, exactly – both autistic men and women clown around in order to feel accepted, for instance – it’s the how. Not something easy to describe.

I knew she’d been considered to have learning disabilities growing up, which in the UK usually means intellectual disability. (“Specific learning disability” or “specific learning difficulties” are how they describe things like dyslexia, dyscalculia, dysgraphia, dyspraxia, etc. But just “learning disability” or “learning difficulties” usually means “intellectual disability”.) But it felt like there was something more than that, something familiar from inside of me.

I didn’t immediately jump to the conclusion of autism, though. When I see someone as “like me” in terms of how their brain works in certain ways, they might be autistic (any possible official classification of autistic, mind you, not just autistic disorder, not just labels like severe or low functioning or the total lack of a label – I’ve never gotten a written label of high functioning or Asperger’s, ever).

But they might also have certain kinds of severe epilepsy that have a constant effect on sensory processing, cognition, and movement.

They might have a movement disorder (which are rarely just about physical movement, however much people try to deny it) like Parkinson’s or catatonia.

And yes, catatonia is a complex movement disorder. It is not a psychiatric condition, it is a movement disorder that often accompanies a wide variety of psychiatric and non-psychiatric conditions. Some examples of psychiatric conditions (as currently classified, and don’t assume I believe in the classifications) that can often result in catatonia: schizophrenia, depression, bipolar, PTSD, dissociation, profound anxiety. Some non-psychiatric causes: encephalitis, neuroleptic malignant syndrome, autism, dementia (including but not limited to Alzheimer’s), epilepsy, brain tumors, brain injury, stroke.

Catatonia is also not just what people think it is. They think it’s a total lack of movement for hours at a time, with waxy flexibility. (1) But the reality is that it’s a very complex movement disorder that overlaps with autism so completely in some areas that some researchers have even posed the question, “Is autism very early-onset catatonia?” There is barely (if any) an autistic person alive who has no catatonic traits. The diagnosis of autistic catatonia comes in when these traits become amplified, generally in adolescence or early adulthood. Autistic catatonia can literally turn a highly verbal aspie with no speech delay, into someone who is either completely mute or functionally mute.

They might have any of a number of agnosias, aphasias, and apraxias. A neuropsychologist once said that I seemed to have all three of those things. Then he told me it was impossible that I really had all three of those things, because they only happen in people who’ve had strokes, brain tumors, and the like. I agree with a paper that says we need different words for developmental agnosias, aphasias, and apraxias, because they have important differences from the acquired versions (for instance, developmental prosopagnosia, which many auties have, is different from acquired prosopagnosia in important ways). But there are still strong resemblances, so the debate over what to call these things goes on.

Regardless of what you call them, I can strongly identify with people who have aphasia, apraxia, and agnosia. Some more than others, because I have the developmental equivalent of some more so than others. Also, autistic people experiencing shutdown (2), can temporarily acquire something that looks very like aphasia, agnosia, or apraxia (3).

I also identify with certain kinds of people with intellectual disabilities, who may have sensory or social or language processing issues in common with me.

So when i say “like me” I don’t mean “autistic” – or i don’t necessarily mean autistic. Some autistic people are very much like me. Others, like my brother, are almost exact polar opposites. But i’ve never met an autie who had absolutely nothing important in common with me (because most auties have at least a little in common).

So anyway, when I saw her I saw “like me” but my mind didn’t jump to autism. But she now has an official Asperger diagnosis, and I hope that brings her some peace of mind about why she’s been different her whole life.

The thing I identify with the most about her? Her artistic talent is entirely connected, more than one sound technician said he’d ever seen in his life, to her level of ability to identify with the art. So if she’s singing from the point of view of a character she relates to strongly, her voice is amazing. But if she’s singing from the point of view of someone she can’t find that identification with… she can’t sing it, her voice just doesn’t work well, and it ends up sounding like crap. Which is one reason her first performance on Britain’s Got Talent worked so well – she could identify so completely with the character and the song. And people could feel that instinctively, which is one reason people respond to her music so emotionally. She is highly empathic (4) and she uses that empathy to “become” the character for the duration of the song.

Another thing I notice is she tries to be goofy the way most people are goofy, but it comes across over-the-top. I used to be a lot like that. A lot.

I think that’s one reason I’ve always liked her. She has the qualities of a highly empathic and emotionally-driven autistic person, which is as far from the stereotype of autistic people as you’re going to get. And now she’s officially diagnosed. Which I hope brings her some combination of:

Self-understanding
Peace of mind
Social opportunities (including meeting others like herself, if interested)
Ability to forgive herself for problems she never caused in the first place.
Ability to access services, if necessary. (Although now she’s probably rich enough to pay people to do things she has trouble with… but she strikes me as the sort of person who wants to do as much for herself as she can, only relying on others when there is no other option).
Ability to get help with problems caused by a lifetime of being treated like shit.

Sources (read at your own risk):

Susan Boyle Confesses Asperger’s Syndrome Makes Her Feel “Like King Kong’s Mother”, People Magazine.

The Truth About My Asperger’s: Susan Boyle reveals just how difficult it is living with a condition that makes her behaviour so very unpredictable. Daily Mail.

Susan Boyle: My Daily Battle with Asperger Syndrome After Finally Being Diagnosed. Mirror.

Susan Boyle tells British paper she has Asperger’s. CNN

Another thing… so much of what I’ve seen of her reminds me of what happens when an autistic person has been treated like crap their whole life and then becomes famous, whether that’s real fame, or (like me) just having a few articles and news stories done about you. I wish she’d had someone around to help her through it, someone who had been there. When I ended up on CNN and was dealing with stalkers and stuff, I had Donna Williams and Jerry Newport to turn to, they both gave a lot of good advice because they’d both been there.

Donna wrote Nobody Nowhere (originally titled something like Dolly: The Autobiography of a Disturbed Child, because “Disturbed” is what she heard herself called, growing up) intending to show it to a psychologist, tell them every label she’d ever gotten, ask which ones fit and why, burn the manuscript and commit suicide. Instead, it was published and became the first best-seller autiebiography. Like me, like Draggle, like Anne, and – I suspect – like Susan Boyle, Donna had been forced through life circumstances, all throughout her life, to perform at a superficially better level than she was actually able to long-term. Her publicity people did not understand this, and did things like plop her in a hotel room in a foreign country and then expect her to know when, whether, what, and how to eat. She almost passed out from low blood sugar before she finally got help.

Donna was unprepared for what the media would do to her, including put out a slam piece engineered by her mind-bendingly abusive, sociopathic mother and a creepazoid professor who the less said, the better. Her mother tried to blackmail her into not publishing, just as people – fortunately not my mother, who was interviewed too and loves me! – threatened to “reveal” that I wasn’t really autistic, if I ever “became famous” i.e. said yes to the interview requests that started pouring in when my video went viral. I said yes to only a tiny amount of them, though – CNN, Wired, the CBC, maybe one or two others In both cases, people gathered up bullies from our past, as well as people who had barely even spoken to us let alone knew us, in her case even a teacher who’d never been her teacher but had her confused with some other kid. My stalkers did it through the Internet, while her stalkers did it through the media. But that’s just one of many ways that being suddenly and unexpectedly thrust into the spotlight as an autistic adult can affect a person. I was later told that even people who make blankets for preemies get hate mail, so I guess some people will hate anyone who is covered by the media.

Like Donna, I had and continue to have severe problems with basic life skills, which people didn’t think of before putting me up in a hotel room by myself. I don’t pass as well as Donna, but being considered a “smart” autistic person in any respect means people assume you can do “basic” things you can’t do. I wonder if that has happened to Susan Boyle, too.

I always feel protective of autistic people who are even marginally famous and unprepared for what that actually means. Whether we’re diagnosed or not, the “fame” tends to descend on us suddenly and send us on a whirlwind tour of hell on earth as we are expected to function in areas we have no abilities in. I just hope she’s coping with all of this okay. I’ve been worried about her ever since I saw that first video of her. The way she moved reminded me of too many people I’ve known, many of whom would do very badly in the face of fame.

As I said I just hope this turns out well for her. Getting a diagnosis late in life can turn your world upside-down. But then so can getting famous the way she did to the degree she did.

(1) The ability to bend a person into shapes – waxy because at first there’s huge resistance then it gives way to easily being able to move the person’s limb around, at which point it will freeze wherever you left it. This is not universal in catatonic motor freezing. I’ve had waxy flexibility, but I’ve also had such severe physical rigidity that they could pik me up from a chair by my arms, and carry me around, and the rest of my body acted like it was still in the chair. They weer not able to restrain me in a typical way because my body was still chair-shaped. Why they needed to restrain a person they described just before doing it as “She’s fully catatonic now” is completely beyond me.

(2) Both short-term and long-term full or partial shutdown, and short or long-term systems forfeiting, Forfeiting is what the autistic brain does to gain some skills by losing others – this can be quick, like a juggling act, or permanent, lasting a lifetime, or anywhere in between.

(3) Apraxia is a term that’s been hijacked by educational professionals to describe developmental apraxia affecting only speech. People will say “apraxia” when they really mean “developmental apraxia of speech”. Apraxia is another complicated movement disorder affecting voluntary movements. It can be born or acquired, mild or severe, and affect any part of the body including all of it. Just as with catatonia, there are some people who think autism is just very early-onset apraxia. As with catatonia, that’s a huge oversimplification at best.

(4) Autistic people tend to either be highly, even debilitatingly, empathic, or very unempathic. Not much in between. And the same person can be both at different times, with different people, or in different contexts. Like most empathy, autistic people tend to empathize better with those like ourselves and less well with those unlike ourselves. Most nonautistic people have terrible empathy for autistic people to the point they can’t pick up our emotions at all, and yet this gets blamed on our social skills problems, rather than a two-way street in which each finds it hard to empathize with the other, much of the time.