Thinking autism

July 15, 2012

I was reading Ragga’s post Why Parents of Autistic Kids Get Judged and What to Do About It and I had some thoughts. I’ve not blogged in over 12 months, but I’m really getting into studying sensory integration disorders and Melanie and I are writing a book chapter on autistic semiotics.

In response to her post, I said the following:

I’m a verbal autistic adult, with out children. The general problem of parents’ expectations of having a normal child, and to further normalize a child’s behaviour is the issue. Parents of autistic children may resort to normalizing therapies, and often see the successes of those therapies as a victory. I’m sure that my parents find it something of a victory that I can pass as neurotypical at a glance, and have been able to hold down some employment. Obviously parents of children on the spectrum are more understanding of the child when they act inappropriately, but I wonder how many parents are comfortable not hoping for neurotypical behaviour. I would say that the expectations are ubiquitous, and need to be challenged or accepted. But I don’t find it shocking that an adult who is not aware of the difference the child has would look at the parent as being at fault.

I would like to wear a tshirt saying “I’m autistic… what’s your problem?” or “Fight Neurotypicality” though with a smile. I’m not angry, but I am NOT shocked at how parents normalize and have normalizing expectations. That’s what a parent is all about.

BTW, your kids look cute. I have pictures of myself with those same, to me, autistic questioning look.

to which she responded

Thank you Jason. Your points are very insightful. …perhaps as to be expected given that you have autism yourself and already been through what many autistic kids are going through right now. I am very thankful for your input as I believe that we parents of autistic kids should listen to autistic adults the most as you know exactly what you are talking about. Sure, every individual with autism is different and autism comes out in many different ways but… there are still some common denominators and you have the insight that others can never achieve – as much as we try.

I have never thought of the angle that you suggest; that we (parents of kids with ASD) are simply too expectant ourselves. Like you say, we do not have the same expectations towards our kids as maybe parents of neurotypical children but perhaps our expectations are still too high despite of that. I have to admit that I do indeed hope that my boys manage to learn the things that people are expected to learn, both through school and in society. …it’s just, you somehow always imagine that everyone want’s to be as normal as possible, including your children, or in other words (as normal sounds kind of negative in this context) that they would themselves want to fit in. Perhaps I’m wrong…?

To which I then said:

Normal is not only a socially constructed fiction that is most convenient for market driven cultures of the post industrial revolution era, but it is unnatural and in the end bad for the species.

I’m not normal. I have 4 degrees, a PhD, teach at a university and run a well funded research lab. I think lots of people would like to be non-normal like me. I also am a high school drop out who didn’t learn to write properly until his 30s, and never had a full time job until his 40s. Some people would not like to be that kind of non-normal.

“Overall the average American, age 25 or older, made roughly $32,000 per year, does not have a college degree, has been, is, or will be married as well as divorced at least once during his or her lifetime, lives in his or her own home in a suburban setting, and holds a white-collar office job”

Parents are deluding themselves if that is their ‘goal’ for their children.

The notion “I just want my kids to be normal” seems to me to be a hope that children won’t be singled out, bullied or marginalized by their peers. Wishful thinking if you look at the statistics relating to bullying and abuse.

Feminist thinking broke the mould in terms of what we thought was ‘normal’ in the workplace and the professions a century ago. The queer community has broken the mould in the civilized world for what is accepted as a meaningful relationship, etc. That means we don’t see the world from a black/white perspective that puts the white, protestant christian, university educated male as the model of what is good and normal. We see the world as a continuum, from left to right, male/female, the whole queer continuum from the hetro-normative male father of the family of the religious right to the same-sex two-spirited parents brining up children in a community context. And somewhere there is a trajectory/continuum for the autistic on an arc that intersects these continuum at some point.

I am NOT an expert on autism. I have read much of the literature and thought about it a lot over the past years, and incorporated it with my lived experience. I look at autism as from the social disability model, meaning that we are disabled by a society that is not inclusive to people who are different, and expects medical model normalcy. I have no time for normal (as described above) nor the economic model is supports.

I’m starting to work from the model that we have to engage children who are autistic in finding out the strategies to reduce their stress and discomfort, and frustrations with themselves and their environments. We’re trying to develop tools for sensory play to help autistics and people who are interested how and why to explore sensory information as a way to reduce stress in the autistic individual. In the end, autism IS a sensory integration disorder. I think that solving the problem with how we engage with and share sensory information will go a long way to finding our place on the continuum of human experience, which in the end is what we want for ourselves and others.

All the people I know on the spectrum are particularly sensitive to disruption, and when they lack the freedom and autonomy to deal with disruption in the way they prefer, overloads are inevitable. And I feel that dealing with the issue of sensory integration is beyond all other things both the direction to allow an individual to engage with others most fully and the key to happiness.

To which she replied:

Wow, you should write your own blog – seriously – I think a lot of people would like to read what you have to say. So many great points. Thank you.

I embarrassedly acknowledged that I have a blog, and this one goes back to 2001. I lost the earlier stuff. I should be obviously doing what she suggest, and blogging more. I think I’ll blog more on… autism.

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