12:42pm August 13, 2014

Soooooo sick of hearing titles that go “AS/HFA”

“Asperger’s and High Functioning Autism” as if it’s a fucking different species from all other kinds of autism.

I was never given a functioning label with my actual diagnosis. It wasn’t high functioning this or low functioning that (although I did get called functioning labels in other contexts).

It was just, at one point, “PDDNOS with signs in early childhood of atypical autism” and then later “autistic disorder”. No high functioning. No low functioning. And one verbal warning from my psychiatrist, “Never let anyone tell you you have Asperger’s, because you don’t.”

Then digging around in my records I found a graph of my functioning (levels over time, it was low and mid functioning only.

And my current doctor has sometimes written that I have “severe autism”. (How you can know whether something is mild or severe, when we don’t even know what autism is, is beyond me, mind you.)

I don’t believe in functioning labels. But the above is what I’ve gotten.

So most of the time I have autistic disorder, no functioning label attached.

Just autism.

Not high functioning.

Not low functioning.

Not Asperger’s

Not even PDDNOS anymore, now that I’m in no danger of anyone locking me up and throwing away the key on the basis of an autistic disorder diagnosis. (That was a huge thing in the nineties, to take people with autistic disorder and diagnose PDDNOS to “protect” us.)

Nowadays, of course, it’d be autism spectrum disorder, no idea which number-level they’d give me, I hate those number-levels. But they’d now add on that nifty catatonia specifier, and I’m happy that it’s possible to do that. You can’t imagine how happy – going from developing autistic catatonia back when there were two case studies in existence, to a time when autistic catatonia is built into the diagnostic codes. That’s progress. At least I think it is.

Anyway I’m rambling.

So my diagnosis is autistic disorder. No functioning labels, no numbers, no nothing.

I like it that way.

I don’t like feeling left out when people specify the kind of functioning labels that are present in the room, so they believe. It’s always “HFA” or “AS/HFA” or “AS”. Sometimes “AS/HFA/PDDNOS” or “AS/HFA/PDD”.

(Forgetting that one possible usage of PDDNOS is for a person so severely disabled that they are unable to do enough things to get diagnosed with autism. Because an autism diagnosis requires a certain number of skills. If you lack those skills, you won’t meet the criteria, and you’ll get dumped into PDDNOS. That happens just as often as PDDNOS is used as a term for mild, or for someone in between Asperger and autism who doesn’t quite fit either diagnosis – like someone who fits the AS criteria, does not fit the autism criteria, but has a speech delay or a low IQ so they can’t get diagnosed with AS and they get PDDNOS instead. That’s why PDDNOS is such a grab bag and means nothing about severity.

Anyway…

I hate AS/HFA.

I don’t hate the people who fall under those categories, or believe themselves to do so.

I hate the exclusivity.

I hate being in a community that claims to be my community, and then says things like “We’re the everyone-but-you community!”

I like having no functioning label.

I like being able to just describe what I can and can’t do, as it comes to me.

Even when functioning labels are determined by IQ, mine is up for debate. There’s literally this zone between 60 and 90 where the cutoff for low functioning or sometimes mid functioning starts. And my IQ is 85. So I could be high functioning, mid functioning, or low functioning all based on where someone’s IQ cutoff is for any of the above. Most often mid functioning, I think, not that it matters given that IQ means nothing about how autistic people actually function.

I was given a test once called the ABAS where you get a score that’s the same as if it was on an IQ test, except it’s your score of daily living skills. I got a 47. There’s that, too. The test only goes down to 40, and up to, I think, 130. Just as on an IQ test, 100 is average.

And… what does any of this mean?

It means feeling like a stranger in my own community.

It means sometimes being the token. The one everyone holds up – “See, sie’s low functioning and sie agrees with us!”

It means being rejected as a suitable token at one point when I was subject to so much bullying that people decided I was more of a liability than anything. That actually hurt as much as the tokenism had hurt. Because it meant they cared more what people thought of me, than what I thought of myself. I actually saw a parent say “Don’t bring hir up, people see hir as a fraud,” and that hurt. That’s when everyone started shifting to finding other people to bring up as their token LFA.

I never of course asked to be a token LFA and I don’t want to be one, or any kind of LFA for that matter. But it still hurts to be tossed aside by the same people I’d expect to be standing up to the bullies. It confirmed I was only useful to the point I was useful…

And it means confusing people, a lot.

And it means being confused, a lot.

But needing a lot of help to get through that day? That is real. That is solid. That is not subject to labels and fads and changes. That’s something I have to face every single day.

I need less help with some things than I used to. I don’t self-injure very badly anymore. I used to bash my head on things until I gave myself concussions. I used to open doors on freeways not because I had a death wish but because I was confused or because it was an automatic movement.

I still have problems, big problems, with safety outdoors. Like walking into the middle of the street and not seeing cars. And like not being able to see things very well. And like not always being able to control where I walk. And like not knowing which people around me are safe, and what they are up to when they interact with me. And even when I sense they are unsafe, I don’t know what to do.

All these things real, all these things solid, all these things totally independent of what label someone decides to give me.

Being attracted to certain colors, shapes, shiny things, movements, and forgetting that I’m running into the middle of the street to get at them.

Going to conferences and having to walk with a scarf attaching me to someone so that I can get tactile feedback as to where I am going, since I can’t see fast enough to avoid bashing into people in crowds.

Getting stuck in doorways, at lines on floors.

So much sensory chaos. Not hypersensitivity and hyposensitivity, but things that go far beyond either of those things. Those things exist too, but there’s so much more to sensory issues than that.

Switching into sensing mode, losing interpretive thought, navigating the entire world based on sensing, not because I wanted to, but because I have to, sometimes.

Having background movements that are unusual and not always able to be suppressed.

Or sitting very, very still, too still.

Or drooling.

All of these things contribute to how people see me, how people see my functioning label, how people see me fitting into their communities, or not fitting into their communities.

There’s lots of people like me scattered throughout the autistic community and we wince when we see “AS/HFA community” or “aspie community” used to mean all of us, because it doesn’t mean us. It doesn’t mean those of us without functioning labels, it doesn’t mean those of us considered mid or low functioning, it just doesn’t include us.

And this concludes my rant after seeing yet another “AS/HFA” reference on a book cover. AS/HFA means the valued ones, the in crowd, the ones with the skills to offer the world. The rest of us can rot for all some of these people care.