Something occurred to me today, as I was doing my morning exercise — for autism/Aspergers assessments, it seems a bit… incongruous… that clinicians would do a verbal assessment of someone who’s highly non-verbal (or visual-spatial).
It’s already problematic that autism and Aspergers are often assessed according to observed behaviors. The DSM-V criteria call for “manifested” behavior, which may not always be the case with women. So, those of us who are flying under the radar to save ourselves from ridicule and persecution, are going to get missed by people who only look for observable phenomena.
Of course there can also be experienced, internal manifestations of these things, but it’s not always readily observable by a clinician trained according to “classical” methods (if you can call diagnostic techniques developed in the past 50 years “classical” – my rant about fads passing for best practice will come later).
The thing is, even if you’ve got a sh*t-ton of internal experiences to substantiate your suspicions, if you’re not verbally inclined (have trouble expressing yourself in the spoken word, experience intense anxiety when verbalizing), that information can be locked away where no one can see it — including a clinician you’re talking to.
In my case, I tried a number of times in the past to express what was going on with me to a clinician I liked and trusted. He was great in so many respects — except he flatly did not believe me, when I told him that the words I said rarely (if ever) accurately reflected what my inner experience was. I just never felt as though I could adequately express the full range of nuances to my thoughts and feelings. He seemed to think he was getting it all, so he argued with me about that, said I was exaggerating, and that he could understand perfectly what I was saying.
It was enormously frustrating, and in the end, I just gave up trying to explain. I quit arguing with him, because he was so convinced he had me figured out. Whatever. It wasn’t worth the constant hassle and aggravation to me, so I just let it drop.
And I’m sure I’m not the only person on the spectrum who’s gone through that sort of thing. The interwebs are rich with first-person accounts of autistic folks (especially women) being dismissed and passed over and completely misunderstood by clinicians. Which makes me wonder why the heck this situation continues to persist. Probably because the people making the rules don’t think there’s a problem. But they’re the problem.
Personally, I think the criteria need to absolutely, necessarily include non-verbal indicators which originate from the assessee (is that a word?). Pictures. Illustrations. Interpretive dance, if that will communicate. Music. Some sort of visual-spatial sort of communication that lets us communicate as we do — the best way possible. The most natural way for us.
Forcing us to verbalize everything can be intensely stressful (unless you’re hyperverbal – in that case, you’re golden). And while that might be useful in nudging us towards stressed-out behavior that makes us appear “autistic enough” to an observer, it doesn’t do much for us. And even the thought of spending more than an hour in a verbal discussion with a clinician can spin some of us into an anxiety plunge that really disrupts our day-to-day lives. The clinician I talked to recently requires a 5-hour all-day session, with a break for lunch – Imagine! Holy Mother of God – sorry, language.
Yeah, that alone makes me reluctant to pursue an official diagnosis, because I can well imagine myself kicking into stress-response mode and starting to mask, just to make all the anxiety go away. When I’m stressed, I become hyper-NT-ish, complete with all the camouflage behaviors and mannerisms that get me by in my daily life. So, putting me into a marathon verbal session could conceivably backfire in a very big way.
What’s more, when I’m over-stressed, I become even less verbal than I “normally” am, so how the hell am I going to speak up and make myself understood under those circumstances? How indeed?
Requiring a verbal exchange for autism diagnosis just makes it less accessible, in my opinion. I can easily see how I could pay all that money, derail my life for weeks on end, and then come out with no autism diagnosis, because I was falling back on coping mechanisms that keep me able to interact with verbal people.
And what would be the point in that?
But aside from my own personal situation, verbal bias is really a problem overall, I think. This is especially true for adults with a life-long history of anxiety over social consequences for autistic behavior, who automatically and expertly mask and conceal what’s going on with them — and then can’t get the words out when they’re under duress.
You’d think that would be diagnostic… maybe it is. Maybe I’m out of the loop on that one. But it seems to me there’s got to be a better way to assess someone, than have them talk to you for 5 hours. Even with a lunch break.
Personally, I think it would make more sense to have an extended checklist of symptoms, and let the person being assessed work their way through the checklist and fill in descriptions of what the deal is with them. We can do this now, I know, but having a standard approach that is clinically accepted as valid would be nice. It would give us a way to be involved in our own assessment, which I think it something each of us wants.
The thing about being on the autism spectrum is, you often don’t feel like you’re actually part of your own life. Everything is different from us. Everything that’s demanded as “normal” goes against our grain, effectively disenfranchising us from our own lives. I’ve said before, I don’t want control as much as I want to feel like I’m involved in my own life. The same holds true for autism assessments. And I think it’s true for more people than myself.
This isn’t a really difficult problem to fix, from where I’m sitting. You just need to actually understand the problem. And we have a long, long way to go before that’s even begun to be grasped by neurotypical clinicians who hold the keys to “gates” blocking us from full inclusion in the autistic community.