Monday, August 26, 2019

On Maintaining Firm Categories: Do Labels Matter?

This link about people on the spectrum came to my FB feed as "Sponsored Content," so I'm wary at the get go, but they present this argument to be addressed: "Autism is a neurological difference in processing, and simply having a collection of traits or quirks without this difference in processing does not make someone autistic." They argue that "there does need to be some clarity, to get away from the ‘We’re all a little bit autistic aren’t we…’ phrase."

My position: But, why?

And, right before that came one of ContraPoint's latest video in which Natalie's characters argue about who counts as trans with a gender dysphoria anti-trender argument countered by a more fluid gender performativity stance.

I'm going to mesh the issues together here because of some similar arguments. I lean towards 'why does it matter?'. Whether someone's got dysphoria or is trending, it takes minimal energy to use whatever pronouns they asked to be used (while, of course, forgiving the forgetful who mean well). What's the harm in letting people try on the other gender or non-gender to see if it fits better? What's the benefit of doing brain scans on people to get some illusion of certainty about how people feel instead of just trusting how they say they feel? Similarly, who is harmed when people acknowledge their struggles with adhering to behavioural norms by latching on to a recognizable diagnosis? With ASD or ADHD or any other checkbox of symptoms that we've rolling into together under a label, why is it important to delineate who is in and who must stay out via an often expensive and sometimes questionable process? When one of my kids was diagnosed (incorrectly, I believe), the very reputable psychometrist badgered me to find that one thing they're obsessed with when one didn't immediately come to mind. Curious.

Before I get into it though, I'll clarify that by ASD, I really mean what used to be called Aspergers. I'm of the camp that Aspergers and Autism should never have been joined together as one condition. Although the checklist is similar, the accommodations are not. For my purposes here, I'm thinking of the kids who are in my classroom able to do the work, but they need to touch their forehead to mine before starting class each day, or they follow me around the room, always standing about an inch away from me, or they need every word said to be precise and accurate, or they need a lot of help to restrain themselves from blurting out their every thought. And if they hit any barriers, some might retreat to sit in a locker elsewhere in the school.  The term "high-functioning autism" is considered offensive now, so I'll just say ASD and hope for the best. I DO see the importance of having some way to make this particular distinction at this end of the continuum. This is what counts as an important line that needs firming up because some people 'on the spectrum' need just a little more time and attention and others need substantial care. That's a very different situation than at the other end of the continuum of care where some need more help and others... what?... others just want more help?? I mean, clearly, if people want supports like more attention and connection (but not so much like an extra EA), can't we just give them those supports?? Anyway...

That leads into one argument people make all about agency that suggests that we fail to see that some people, people who have different processing abilities, actually CAN'T do the thing that others are doing the way they're doing it. The corollary of this is that everyone neurotypical (NT) CAN do the thing, they just don't want to or they're lazy or being belligerent or rude and getting away with it.  Or, in the case of trans trending - they just want attention.

BUT Temple Grandin, autism expert, is adamant that many people with ASD actually can learn typical behaviours; it just takes more explicit direction and more work. It's similar to students who complain that Sally never studies but gets perfect on tests, and somehow it's not fair. It's our lot in life, and forgetful people like me have to study for hours while others can just glance at their notes. We can all do well on the test, but some of us have to spend ages studying in order to do it. The other issue here is that many people who are officially NT still struggle to master specific behaviours for a variety of reasons. Someone raised without social skills instilled at a young age can be at a similar disadvantage as someone with ASD. It will be an effort to learn them later on. So, does it matter whether someone has ASD, officially, or had a neglected childhood such that they didn't learn proper social skills when we're decide how to treat them? Either way, we'll try a host of things to help them learn to greet people and stand a customary distance from them, etc., until something works. Education is an art, not a science.

Personally, matching my tone of voice to gestures and attitude has always been difficult for me, but I'm still trying. I can read social cues, more or less, but I can't match them. I stare too long (so people in random situations think I'm in love with them) or not long enough (so people think I'm rudely ignoring them or that I despise them). Sometimes if I tell a joke, people rally to try to help, and if I tell a story of a profound difficulty in my life, people laugh. It's something I've just gotten used to after years and years of looking for a solution. It occurred to me recently that this isn't something that I can get help with through therapies (which I've tried and tried), but instead I need acting lessons! In fact, it might not be a bad idea for some out of work drama teacher out there to set up a day camp to teach a course for people on the spectrum or anyone with weak social skills: Acting for Everyday Living. Matching tone and gesture to intention is a thing that I believe I can do, but I need explicit training, and maybe cameras set up around my house, to understand how my tone sounds compared to how it needs to sound to get the desired effect.

With technology, we could be developing a generation of people who don't make appropriate eye contact, who stare at their lap during class discussions, obsessively scrolling. And the reverse is also a problem: that some signs of social skill problems are masked by phone use. Kids are officially neurotypical, but their behaviours are undesirable and need to be re-trained. The upshot of this is that I think, like Grandin, that many behaviours can be trained, but it's much more difficult for some people than others, and that's always the case in any group of people.

The other argument made is similar, but with a slightly different focus around sympathy, that because this is harder for some, that needs to be recognized. There's a sense that people who are actually dysphoric or who are actually ASD are more deserving of our sympathy for their plight. They have a more difficult time of it, and that must be acknowledged.

I get it, but I have a hard time with this notion that some people are more deserving of compassion. My gut response is, It's not a contest! Pain is pain. We're all on journeys that are difficult for a host of different reasons, and we each have a different capacity for suffering. Someone with profound difficulties but phenomenal coping skills and social supports might be doing much better than someone with mild issues and no coping skills. We just can't compare our problems like that. If someone's having a hard time, for whatever reason, despite any official diagnosis, surely we can offer them compassion. Money for funding of programs is limited, but our compassion doesn't have to be.

Yup there are attention sucks out there who complain all the day about one thing or another. Maybe they need more compassion. Or, maybe they need to be directed to other ways to have conversations that's more of a two-way exchange. Or maybe they can read some stoicism to learn to compare themselves with people worse off. It's useful to know the various challenges people face just managing their day to day lives. In any case, though, if people need some attention because they're going through something they're not coping with very well, shouldn't we give it to them?

No comments: