New Behaviour

Filed Under (Adam, Autism and Learning, Behaviours, Inclusion, Sensory Differences, Sleep, Transitions) by Estee on 04-02-2011

We talk often in autism about a dissonance of skills and “uneven learning.” It’s an easy thing to notice or say, but it doesn’t seem that easy to accommodate. Not easy, because we still have the expectation that an autisitic person must respond typically.

Adam has had quite the transitional year. He has gone through parental separation, moved to a new home with me and started a new school where the expectation is that he sits at a desk. His sleep has worsened, and his avoidant behaviour in doing certain “tasks” has begun. And yet, my Adam is talking in full sentences more often, is telling me how he feels, and can play a mean “reciprocal” game of I Spy with me. He can draw well (if given the chance) with perspective that is more sophisticated than his same aged-peers, even if his motor planning, that is line, is not as sure and resolute.

I have to say that when someone talks to me about Adam’s “behaviour” I do think in the old-fashioned sense that he is not behaving “well,” as opposed to looking at what’s causing the behaviour. It still pops up from time to time, and I am concerned that implicating behaviour is a way to not only blame Adam, but put an expectation and onus on him that is not fair. That is but one legacy that ABA left behind, although I’m not commenting on some of the methods used by the practice as part of an overall pedagogy. I bribe him a lot to get things done.

Adam needs physicality, lots of movement, interesting content, and a chance to respond more by typing. He needs more preparation, I believe, to start his day, and a different kind of structure in it. What I mean is, by 2 p.m., the boy is tired. I am still trying to figure out what that structure should look like as I orchestrate new programs and activity in his life. Because, Adam is no longer a baby. He will be turning nine this April.

It seems to me that we are learning about how autistic children learn, or at least I’m learning everyday. My process of learning about Adam and trying to work with his team of teachers and supporters never ends. Sometimes, I sit and stare at the wall, I admit, and wonder why we still haven’t figured this out. Maybe I was secretly hoping we would have by now.

I’ve hit the books again. I’m watching Adam closely as he has trouble falling asleep at night. I watch my own responses to him when I feel tired and frustrated. And one thing that surprises me is that I still am not giving up. I don’t want to blame Adam for being autistic. I want so badly to support him and to have support. I am still trying to articulate what accommodation really means for him. I am constantly evolving my attitude, and behaviour, towards him.

Soon Adam will have an aide who will take him into the community, to help him be a part of it, make friends, take theatre classes and go skiing (he starts next week!). I hope to get him into Special Olympics and keep working with those who have helped us along the way. It is clear we don’t have all the answers yet. But if you have some success stories to share, we’d sure appreciate them.

About Control

Filed Under (Activism, Behaviours, Contributions to Society) by Estee on 26-01-2011

Yesterday, The Globe and Mail published, For A Child, It’s All About Control. The premise of the study, conducted by researchers in New Zealand followed 1,000 children for more than thirty years. The findings, published in the Proceedings of The National Academy of Sciences stated that “those children who demonstrated strong self control skills as early as age three were less likely to abuse drugs, and develop health problems, experience financial difficulties or be convicted of a crime.” The ability to control one’s own behaviour is an indication, therefore, of future success. I guess that makes most of us the doomed portion of the population.

I’m not just writing this because I felt like I was reading a paper in 1900, not 2011. I’m writing because I have an autistic child, where the controversy in his way of being is primarily described as behavioural — difficulties with attention, focus and impulse control. Children diagnosed with ADHD, ADD share similar impulse control “issues.”

It’s an odd time we live in. We diagnose every possible human way of being under the sun, while also being able to appreciate, paradoxcally, the creative contributions and potential of people with, as we say, “different kinds of minds.” Despite all our best efforts to use medications to control behavioural issues, the individuals we medicate are often incredibly able, talented, and have been, in fact, insanely successful. An official ADHD website proudly lists successful people with the disorder, the list including Albert Einstein. And this list. In keeping with funny little lists, here’s one that cites some successful autistic people. And another one.

Most of us have heard and read about Donald Treffert’s work in giftedness and autism, although not every autistic person possesses exeptional gifts (even though everyone is exceptional). The real issue seems not to be that the ability to exercise self-control makes us more successful, but in how we learn to work within the frameworks we’ve got. The most heralded people of our culture are the ones who are able to think out of the box; in other words, differently.

Another issue is one of pedagogy. The study insinuates, for me anyway, that all children should be alike: focussed, sitting at their desks and compliant with their teacher. A child like Adam is a sure candidate then, to be banned from schools that use these criteria as a series of prerequisites. Sure, we all have to learn the rules, but the rules also have to bend for the accommodation of individuals so that they can learn. One example is having children move throughout their day in order to think. As physical programming gets slashed and Canadians, in a recent CBC report, are getting fatter, it might be no wonder how children have difficulty concentrating. There are many different ways to learn. Most autistic chidlren need sensory stimulation throughout their day, similarly, to be able to focus.

“Self-control is a vital skill for scanning the horizon to be prepared for what might happen to you, for envisaging your own future possibilities, for planning ahead to get where you want to go, for controlling your temper when life frustrates you,” says Terrie Moffitt from Duke University, quoted in the article. Really? Can we truly plan ahead? I mean, a few years under my belt and I’ve been stimied over and over at the universal joke: that life never ends up the way we plan. Nevertheless, we’re all supposed to have a good one. While it’s not the entire point of my post here, some of the reasons cited as necessary for being in control of oneself in the study seem a little silly.

How many of us have had behavioural issues in our lifetime, or a real diagnosis effecting our ability to control our impulses? Have the researchers considered the contributions made to our society by individuals who have severe difficulties with it? How many of us might have to use many accommodations throughout our day in order to be “successful” — the very word raising many other questions on what success really means?

“You’re training people to think about long-term consequences of their behaviour,” Professor Piquero was quoted.

Indeed.

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Hummingbird

Filed Under (Acceptance, Autism and Learning, Behaviours) by Estee on 05-11-2010

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I’ve always called Adam my “little hummingbird.” The way he flaps his hands and can dart back and forth, particularly when he seems to me “revved up.”

So many speicies receive respect from us in the sense that while we do not fully understand their behaviour, we know there is purpose and meaning behind it.

As I continue to work with others regarding Adam, I proceed with caution. The goal in getting Adam to focus, still seems to hang on getting him to stop these behaviours. We believe that once he stops, say, hand-flapping, he can “stay on task.” It’s certainly a challenge if we expect Adam to do something in particular that other typical kids do.

I am not dismissive of this or maybe even some need for it. Except, as his parent who watches him day in and day out, who can see his anxiety on some days after certain events which then can increase this “over-arousal,” I am trying to encourage Adam’s team to engage in his activities. I find that when I hum like him, vocalize and turn it into song, Adam looks at me with a rapturous smile. Working with Adam, as with anyone, involves a total respect of him and his needs and behaviours as well as a compromise from both of us. As adults, it’s up to us to learn how to teach Adam, and kids like him, to be creative thinkers. I don’t believe that we teach autistic kids to do this. We teach them to repeat back to us what we want them to. While we may want them to be creative and critical thinkers in the long run, I have to ask as I hope all of you do too, how are we nurturing this?

I want to learn how to teach Adam to think and act creatively, as I recognize that most of his day is spent with people telling him what to do… and to “quiet” his precious hummingbird hands.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.