Tuesday, August 6, 2013

On Categorization of Behaviours and Abilities

People are always looking for the single magic bullet that will change everything.  There is no single magic bullet.  - Temple Grandin

Some people are quite upset about the recent change to the DSM that removes Aspergers as a separate category from Autism. Now kids formally diagnosed as having Aspergers are on the Autism Spectrum Disorder (ASD) instead. The WHO advocates using the ICD anyway - where Aspergers is still a separate category; the DSM is more American than universal.  Whatever. I’m more bothered by how the DSM and ICD are set up to begin with.

Why do we want to label things so clearly and with finality – particularly conditions that are largely subjectively determined? There’s something nice about knowing. There’s a relief that you’ve finally figured it out and can move on. But that feeling is illusory and temporary. And I’m not convinced it helps us in the long run to have so many kids labeled with something as if they’re static beings that were completely figured out by a professional figure-outerer. As if that’s possible.

My oldest daughter has the main signs of Aspergers. She has problems “getting” people, and she’s been singularly obsessed, since childhood, with aviation. It’s impressive how many details she has in her head about birds and how they fly. But, I’ve had issues with people myself, and I can’t help wondering if she has a built-in problem, or she just didn’t learn the right social skills from me when I stayed home with her in those early years. Either way, when she brought home a form for me to sign, indicating that she would be writing the grade three standardized tests in Special Ed, I had her formally tested. They said there’s nothing wrong with her, but they’d give me a prescription for Ritalin anyway. Uhhh, no thanks.

When she started really struggling in school in grade 8, and I had her tested again at a different place, and they said she has a very specific learning disability. Because the diagnosis was so specific and limited, and the solution was clear and useful, it was so worth the time and money to get the results. She went from being told she should be in essential level classes in middle school to studying science in university.

My youngest daughter has “louder” problems. She regularly flips out. She does well in school, but has behavioural issues. I used to take all the credit for my first two being sweet and polite, but now that would mean taking all the blame for the shocking things my third says and does. I finally took her in for testing when she decked another kid on stage at a Christmas concert! So now I’ve decided Freud was wrong; people are people, and there’s only so much effect parents can have on them. That helps me, a bit, but theories about why she is the way she is do little to help her calm down in the here and now.

The big problem is her clothes. She can’t stand anything not quite right. It’s not just tags on the back of her shirts; it’s everything. She can only wear a coat if she’s wearing a sleeveless shirt underneath. And I typically can’t get her to that point until about mid-February. She’ll lose it if her mittens don’t sit perfectly at the identical length on each arm. It's not the feel of the clothes, but their accuracy.  I’ve walked her home from school with her stripping her clothes off, shrieking, and me following behind collecting them. You get the idea.

But the most difficult thing for me is that she can’t be reasoned with, even now that she’s nine. If she wants to go outside, but it’s starting to rain, I’ll offer a choice of an umbrella, or a coat with a hood, or we can just get wet. She’ll respond by screaming for a good hour or so; no choice is acceptable except for the rain to stop. It makes her difficult to be around. It’s heartbreaking that her brother and sister want nothing to do with her. I’ve been telling them to be patient; she’ll come around. And it is improving, but by inches. I still have hope that they’ll get along as adults. One can always hope.

So I took her in for testing, and they told me she’s got Aspergers and ADHD and that she’s gifted. They strongly advised Ritalin, but I declined. They suggested some books, and I’ve read them all. But none of them tell me how to help her beyond basic behaviour modification and cognitive behaviour therapy strategies I learned back in university. And her teacher told me she can’t be IPRC’d to get special help at school because her marks are too high. Apparently she works so much better with a computer than on paper, but she can't have access because she's not IPRC'd, so she needs to fail some classes to be flagged for extra resources.  That’s all bullshit, but I’ll work on that one with new teachers in September.

But here’s the thing. Who cares where she fits according to the DSM or ICD? Yes, I know it’s all about getting insurance cash for special programs and the like. But that system doesn’t work. So many people are denied access to what they need because their doctor or testing agency didn’t use the right wording in their file, or the teachers want to protect the school and insist a child is fine when she’s clearly not. It’s nutty. And it doesn’t work specifically for Aspergers/ASD, and ADHD because those conditions mean so many different things. If you have enough checks on a list, you fit a category that’s closest to describing your behaviours, but the treatments for each category don’t work for each person. We’re trying to be efficient and expedient by grouping symptoms in a way that we can create a disorder to treat, but people are all far too unique to be usefully categorized.

I feel the same way about LGBTQ labels, but that’s a post for another day.

Instead of categorizing groups of symptoms under a heading, I wish we could just look at strategies and supports for each specific problem, keeping in mind how they each fit within the whole person, but on an entirely individually basis. My daughter has perfectionism issues. The Aspergers and ADHD labels do nothing to get her coat on in the morning.

But here’s another part of the problem: if a student in my class acts differently, and I explain to the class he has Aspergers, then people are generally okay with his behaviour. It’s okay once there’s a label on it. But why can’t we just say, “Hey, that kid says random non-sequitors all the time. Cool.”? Wouldn’t it be better for everyone if we could be okay with the different behaviour without a label in place. Then we could just accept people immediately instead of waiting to find out if they actually have something legitimate - a real problem rather than…what?…an intentional act of non-conformity to social norms? I guess we want to know whether or not the person can help it – has control over it. But we can all help many of our odd behaviours to an extent when we’re rested and aware and feeling up to it – even many kids with a label.

I had a student a few years ago who used to greet me by putting both hands on my shoulders and touching his nose to mine. I consistently told him that’s inappropriate, that he can wave, or shake my hand to say hello, but he can’t touch my face. Within a few weeks I was able to completely extinguish the behaviour. But other teachers allow the face-touching insisting he can’t help it. I argue that a diagnosis isn’t a free pass to any behaviour in the classroom. We all have to try to work with some of the more necessary social norms we’re established. For better or worse that’s how civilization works. It’s in their own best interest to figure that out sooner rather than later, like Temple Grandin says,
“The other thing is, teach these kids manners. I was raised in the ‘50s and ‘60s, and manners were drilled into me. I see kids [on the spectrum] today that have no manners. That’s going to hurt them. You can’t punish a child who is acting out because of sensory overload. But it’s unacceptable to see kids throwing things and slapping people. I see kids with Asperger’s who can’t hold a job because they are constantly late. Teach kids to use an alarm clock. This is common sense and sometimes we forget about common sense. Autism is used too much as an excuse for bad behavior.” 
If someone’s clumsy and nerdy and tends to stare at the floor when they talk to people if they talk at all, maybe they’re just a generally awkward person, or maybe it’s ASD. But who cares? If they get a diagnosis, they get more time on tests than if they didn’t, but can’t we just give people more time if they need it rather than give more time to those with the persistence to go through the testing. And it’s only the kids labeled “gifted” that get to do cool stuff in a more individualized program even though others might benefit more from that sort of system.

I think my oldest has Aspergers even though she's only ever been diagnosed LD, and that my youngest has some serious OCPD going on.  She doesn't have the repetitive behaviours or interests of a typical Aspergers diagnosis at all; she's just angry whenever things aren't exactly the way she needs them to be.  But I'm not a professional, so it doesn't matter what I think.  And it's all just crap anyway!

I’d like to get rid of the “diagnoses” altogether and just look at specific symptoms. Meds are always a crap-shoot regardless the label anyway because everyone responds differently to them. Doctors try one for a few weeks, then, if that does nothing or has side effects, they try another. And it seems they don't even need a diagnosis to hand out Ritalin.  I suggest we just be more accepting of each other, and help people other out when they need it, and let kids go beyond the curriculum whenever they can, and try a few on different drugs if that’s what seems to be needed, and get insurance companies to cover costs of specialized programs based on a person's success in the program or with the drug rather than the scouring for a doctor to sign the form. What a novel idea! Sure some will take advantage, but how harmful is it to take advantage of a program or medication that might be of benefit?

Okay, the drug and program and insurance bit is a bit utopian for our times, unfortunately, but we can surely just accept the head-shaking or non-sequitors or singular obsessions or unusual eye-contact or very close body contact or preference for a computer or not as differences that we can work with individually as they affect us, rather than as a part of a condition that can only be excused and accepted once officially labeled.

1 comment:

Tasha Boone said...

Labels, labels. Really tiring and a waste of time. That's why they're not an answer to anything, especially to things like drug addiction. The drug addict is forced to spend his/her time fending off the stigma of the label, and stressing on it; instead of sorting out the issues and finding the cure. We ought to stick with solutions, not with our personal views of the problem and the people who have it. That is the way, I think.