“I am a man, nothing human is alien to me.”

~Terrence 

A while back I wrote an article here about understanding the autism spectrum. I wanted people to understand that the classic expressions of autism like sensitivity to sound and not liking eye contact weren’t alien and weird. Those are expressions of normal humanity just with a different threshold for discomfort. If the”slider control” of sensory sensitivity is set for most people at 20 to 30 (on this completely arbitrary scale I’m making up) then Asperger’s might be at 50 and profound Autism at 80. It helps to clarify our relationship to ASD people. They are ourselves in extremity.

But that’s also a limited way to look at it. The spectrum of human neurology isn’t a little train track with stations scattered along it. In the current diagnostic map, there are a set of boxes available to bean-bag toss people into. But many people are profoundly affected by different kinds of “out of tolerance” brain quirks and kinks and they don’t meet the 4 out of 6 diagnostic criteria for this or that disorder. Therefore, whatever is up with them is bundled into the set of things that don’t officially exist and therefore can’t be recognized and treated within the current therapeutic sphere. The same people may be treated anyway by being placed in one of the existing boxes. Without wanting to pathologize everything, or unduly blame the caregivers, this is a bit like being treated for one illness because it sort of reminds your doctor of a different illness she’s more familiar with.

Asperger’s Syndrome, which officially doesn’t exist anymore, had a very distinct behavior profile. It’s understandable that Hans Asperger could recognize this signature in the boys he studied. As his model gained acceptance, more and more people were noticed by their similarity to the profile. More and more people appeared as outliers. In a sense, it’s like looking at a very busy wallpaper full varied shapes and configurations and only noticing one.

Understand me, I’m not suggesting that the world will be a better place if we invent a syndrome for every complaint or complexity. A diagnosis is only a blessing if it helps to make you whole. My son, like me, is a complicated piece of work. Earlier in his school experience, we struggled very hard to create a really good IEP for him with his teachers. This is basically a guide to how the school will understand this kid and deal with his issues. He had a provisional diagnosis of Asperger’s but he might as well have been given an XXX-Large cowboy hat for how well it fit him. At one point I found online what sounded like a remarkable match for his constellation of issues. It was in the European version of the DSM but it wasn’t in the American version. The result was that it couldn’t even be considered because, for all practical purposes, that syndrome existed only in Europe and not in the United States. Imagine if you had diabetes and sought help and were told: “Diabetes isn’t a real thing, at least not in this county”.

As I understand it it’s better to have ADHD in at least some areas of the United States than in most of Europe. Apparently over there they still hear a lot of: “That’s not a real thing.” Over here a surprising number of people with some sort of processing issues are equally likely to be placed in the ADHD box OR the high functioning autism box. Because even at the state of the art level of diagnosis this stuff isn’t crystal clear. We don’t have truly differential diagnostic tests and subjective impressions and biases play a large and rather random role.

Maybe the most important thing to consider though is that the level of the supporting science is very different for this and say cardiopulmonary disorders. Sometimes one gets the idea that medical science is a big vehicle carrying everyone forward at the same rate. We also tend to fall into the mistaken thought that just because there’s a treatment assigned to all things recognized as an illness that that treatment is basically successful. There are plenty of medical issues where the recognized best practices are really not very effective but are still treated as if hand delivered by Moses rather than probationary best practices that should be constantly studied for efficacy.

When it comes to Autism, knowledge has increased impressively since Hans Asperger. But there is a huge crowd of us weirdos sitting in the waiting room hoping to have our problems recognized as real not so we can wear the special cumberbund of victimhood but so we can stand a chance of improving our lot. Right now, even if your processing issue is recognized, the most that is likely to happen is the creation of a small list of best practices and some medication suggestions based on early, provisional research. The results of these at best are generally teeny, tiny incremental improvements in quality of life. Let me tell you, the communities of neuro-atypicals are all out there on the web appealing to each other for hope with the intensity of a family member looking for a lost child. The medical communities that treat them tend toward a kind placidity because they embrace the idea that having a treatment on the books is good enough. I’m not blasting caregivers for not dropping everything to research our crabby and confusing brains but what would help is recognition that what we know now is far from successful and sufficient.

For now, it would be useful to take the spectrum and give it height and width and depth as well as length, to give it some range and subtlety. And let’s not start by recognizing a single pattern and trimming the real human beings to fit. Let us take excellent measures of our many variables and begin to map an overall system of ourselves and our range of possibilities. Let us map atypical neurology like a range of islands and discover their proximity and relationship to each other. Patterns WILL emerge and we will all find our place together in a broad and subtle map of human nature.

 

 

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