We might be doing this all wrong

I’ve been doing a lot of thinking/reading/talking about autism and happiness. I think it’s an area that is sadly neglected in our rush to help kids learn important skills (which still matters, but maybe we are doing it wrong). I’ve been noticing just how much correcting we do of people with disabilities and how, even if we mean well, we are sending the overall message of, “you’re not good enough”.

Even when we say something that is supposed to be positive and affirming such as, “I want you to achieve your potential”, the underlying message is “you’re not good enough right now“. I don’t even think most of us could define what we really mean by “achieving potential”, but if someone brings up my potential, I can be pretty sure they don’t think I’m achieving it currently.

Teacher correcting student. (Second grade girl (African-American) and teacher go over problems on a math test. Yates Arts-in-Education Magnet School (urban school) in Schenectady, NY.)

Would you allow this to happen to you?

When I really start thinking about it, it is kind of shocking how far we’ve taken our belief that we are justified in trotting out people’s deficits in annual meetings without their permission. I mean, how many of us would willingly be subjected to an IEP meeting or an annual team meeting where a group of people (many of whom you didn’t choose, all of whom have some version of power over you) get to openly discuss your flaws and plan ways for you to improve on them? Who would agree to that?! I don’t even like people to point out one thing that I’m kind of bad at, much less take it upon themselves to make me practice to improve on it, on some kind of schedule that they pick. No way.

But what about independence?

And it would be one thing if we could say to ourselves, “Well, I’m going to make this kid feel bad for a short period of time, in order to help them be independent/employed/happier later in life”. In fact, this is how we usually justify working on goals. However, we do not have a great data that this is actually true. Adults with disabilities, statistically speaking, are unemployed, and often suffer from loneliness and depression. So, even though I do believe in teaching useful skills, I don’t think we can feel super confident that we are justified in the way we teach those skills right now.

I have never seen a formal happiness goal on anyone’s paperwork, in my decade-plus in human services. Maybe this is because we aren’t good at measuring or practicing happiness as neuro-typicals either. We should get better at happiness! According to our meager research in this area, happy people are more confident, more able to learn, and more able to weather the unpredictable nature of life. Plus, it seems fun to work on.

Let’s make sure we’re justified

So, my whole thinking about autism intervention is making a shift. I still really believe in teaching skills, but I also think that we should make sure that we are justified in ‘intervening’ in anyone’s life (by good data-driven outcomes in adulthood) before we go around squashing people’s self-esteem in the name of some future independence that we can’t even deliver on.

When I face my ‘deficits’
The days where I can bear to deal with the things I’m bad at are days when I’ve been happy, done things that made me happy, felt supported and accepted and gotten to choose some aspect (like the time or place or audience)of the way I deal with the flaw.

***Additional note: Globally, we’ve got some big problems and our precious neurotypical thinking is not panning out well in the solution department. Instead of cultivating and encouraging people to think differently, we are systematically convincing all the people who naturally think differently that they will only be worthy people when they are a little more like us. Who would offer up a potential new idea after a lifetime of being corrected for thinking differently? Not me.

3 Comments

  1. I14ng March 26, 2014 12:02 pm  Reply

    I think a big part of this is to ask the question, why is it so much more stigmatizing and demoralizing to be behind on social skills, than it is to be behind on reading and math? Why does one have to be Diagnosed with Autism (some scary-sounding stuff) before having a *chance* (if often not a meaningful reality) of getting some extra tutoring in the social area? Why is a social delay a “deficit to correct,” rather than a skill to teach?

    Kids who really struggle with reading or math feel some stigma and low self esteem as well, but perhaps it feels less like a judgment of the whole person. Dyslexia isn’t normally viewed as a disease to be treated, but as a learning difference. And for our son that’s exactly what autism is about, just the flip side of his learning strengths (which are in reading and math!).

    For other people of course autism is different, since autism is a vague heterogeneous category of people who have some kind of social difficulty for some kind of reason. Sometimes the social delay is a small part of a much more difficult overall picture. I get that.

    The IEP process arises because schools are broken. They focus on narrow domains (reading and math) instead of the many other ways people can be talented or can need development. They are bound by rules and practices that forbid meaningful individualization – at least without elaborate paperwork and stigmatizing labels. They are overly standardized, so schools can’t innovate and parents have no real choices (in Asheville, we have a choice of 5 public schools… which all have the same basic schedule, curriculum, even lunch food).

    I suspect these broken schools make many kids miserable, not just autistic kids.

    In deciding how to help our son I look back a lot on my own childhood. At that time it occurred to almost nobody to use the “autism” word for verbal more-or-less functional kids. And my parents were relentlessly positive about me and I had good self-esteem. But wow, it was hard not to have any friends, and just not understand what was happening. My parents were firmly in the “if people don’t like your individuality, ignore them, they are terrible” camp. But while that’s admirable, it’s a very hard path for school-age kids to walk, I can tell you from personal experience.

    For our son, I’d definitely temper the “let your freak flag fly” advice with some “and here are the tradeoffs” / “is this particular battle really worth fighting” – but he’s not old enough yet. For now in preschool we’re intensively working on skills because I think a lot of the trouble when older is feedback loop (if you don’t play with kids as a preschooler, you never practice interacting, and you get more and more behind with less and less practice).

    As he gets older I suspect we need to shift focus away from managing weakness and toward building on strengths. Nobody becomes a happy adult by managing their weaknesses.

    Even when managing weakness the focus should be on teaching a skill not preventing a behavior. The point isn’t to stop tantrums, the point is to teach a better way to get needs met (and to teach that some ways of interacting aren’t OK because they aren’t considerate of others).

    So it is wonderful that we know how to give kids a little skills boost these days.

    But it sure sucks that we can’t just individualize for ALL kids and help ALL kids manage their weaknesses and thrive on their strengths. Modern educational and insurance institutions just can’t cope with that.

    One thing I think we can all do is to avoid talking about autism *itself* as a disease or a unitary condition. Avoid talking about “treatment” and instead talk about “teaching.”

    If a person has a disease condition – perhaps even one that results in autistic traits – then fine, talk about that as such. But that condition isn’t “autism,” it’s a condition which involves autism as one trait.

    Disease talk leads to some of the wrong ways of thinking that mean we forget happiness and forget strengths and forget that ALL kids are individuals and need an individualized education and need to be happy. It lets us put kids into these horrible “broken” and “not broken” imaginary buckets that simply shouldn’t have the power that they do.

    All kids would benefit from the stuff our son gets because of the autism label. The IEP, the 1-on-1 skills tutoring, all of it would help any kid, if done well. The yes-or-no diagnostic question where some kids get the whole pile of help and some none, is too crude a line to draw.

    Sorry for the many tangents… I love your post.

    I guess I see the problem as one of framing and how we think about autism (as correcting a deficit / treating a disease). The framing leads to forgetting that we’re dealing with a person, forgetting about strengths, forgetting that all kids are individuals, etc.

  2. Priscilla Brackett March 28, 2014 11:57 am  Reply

    Thank you. This post brought tears of happiness to my autistic eyes and a little bit of healing to my heart. Thank you for understanding that all humans, including those of us who are autistic, have an intense need for respect and understanding.

  3. Aleph April 9, 2014 3:12 pm  Reply

    Right! Or not? As we know we humans are a “social being”… Really?! Yes, and we have to be all equal. Are we?

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