Problems Ahead

Estee has just posted an excellent piece on The Economy of Pity. I was particularly struck by her reference to Dr Buxbaum and the possibility of a prenatal genetic test for autism. There is more on this in her earlier piece, Autism and Paradox.

If advances in genetic understanding do see off the biomedical curebies this creates a new set of problems. The curebies have already created a situation in which autism is seen as a devastating disorder. Severe expression of autistic difficulties in childhood is presented as the norm for all autistics of whatever age. Early intervention in the form of ABA/IBI is being trumpeted as a medical necessity.To judge from media reports this picture is becoming the popular view. Prenatal testing will inevitably raise the question of abortion. If autism is so horrible why bring autistic children into the world?

By coincidence I received a newsletter from the Human Genetics Commission this week. I am a member of their Consultative Panel and they have just asked for my views on

  • Whether there should be a law to prevent genetic discrimination (for example, like there currently is for sex discrimination) ?
  • Whether you feel that such a law should exist, what should be included in the legislation and how could ‘genetic discrimination’ be captured?
  • Whether you can suggest other ways in which genetic discrimination could be tackled?

The government is also creating an electronic database of health care records. The Human Genetics Commision has asked me how I feel about genetic information being included in such records. They are concerned about access to this information by healthcare professionals, in particular “who [...] should be able to access it and in what circumstances?” There is also the question of family history being included perhaps in a genogram and thus other family members’ medical history being available to healthcare professionals who look up an individual’s records.

Also this week I read an email on an autism list from a parent who was told by an educational psychologist that their son would never achieve his full potential because of his Asperger Syndrome!

I apologize that this is not a particularly coherent or polished entry. But I just felt the need to raise concerns about the impact of advances in genetic research coupled with persistent negative images of autism.

6 thoughts on “Problems Ahead

  1. I worry about this sort of thing. I really don’t want to live in a world where it becomes commonplace to terminate pregnancies simply because the genes aren’t “normal”.

    I know my parents wouldn’t have aborted me, but I’m pretty sure that a genetic test would have shown me to be “abnormal”.

    I highly recommend the recent post on prejudice over at Ballastexistenz. Check out all the links.

  2. Thanks Jannalou.

    With autism especially I am concerned because environmental factors play such an important part. I am not talking about environmental triggers for genetic predispositions to autism. I am talking about “full syndrome autism” becoming a disability because of environmment you live in and the alternative – where you alter the environment – so someone is stiil autistic but is not disabled in that specific environment.

  3. Interesting. I was just talking about that idea with some people at church this morning – that is, the idea that disability is a social construct. They seemed to understand what I was talking about.

    The other day when I was grocery shopping, I saw a man doing his shopping who had no legs. His chair was designed such that he was lying on his front. When I saw him, he had his list on the floor in front of him and was writing on it. He finished with it, put it away, and maneouvered himself so fluidly that I knew the only trouble he might have while shopping would be if he needed something that was too high for him to reach from where he was. And really, anyone shorter than I might have that same problem while shopping anywhere. (I’m 5’9″, so on the tall side.) Is he disabled? Probably in many ways. But with the appropriate supports (a chair that he is able to maneouver easily), he can do his own grocery shopping.

    I, of course, have an “invisible” disability – made all the more invisible because I wasn’t even diagnosed with this “developmental” disability until I was 28 years old. (I call ADHD a “developmental” disability because part of the diagnostic criteria is that the symptoms begin prior to age seven.) But since I started medication, I’ve been able to follow through on making changes discussed in counselling sessions. I’ve begun to really take charge of my finances. I’ve become more able to keep a tidy home (it’s not there yet, but it’s well on its way, and that’s a minor miracle in and of itself). I’ve finally gotten a job that I enjoy and that provides me with a steady income. I’m no longer living in a constant state of anxiety, and I’m no longer working 50+ hours per week and just scraping by. Nothing about me – who I am, how I think, what I enjoy – has really changed with the introduction of medication into my system, but I am learning to develop the supports and structure that I require in order to function. Okay, well, I have changed in some ways, but I think anyone who experiences dramatic change in circumstances will naturally change as a result.

    Basically, on meds, I still have ADHD, but I am less disabled than I was off meds. (I’m still disabled in some ways, but learning more all the time about how to make my life work better for me.)

  4. I don’t think I meant that there is no such thing as real disability. Heck, I just managed to drain my car battery by leaving the headlights on for the second time in 9 days. I feel utterly stupid. And it happens a lot more than it would if I had a normal brain.

    There really isn’t much about this particular aspect of my ADHD that can be written off as a “socially constructed disability”.

  5. Kristina,

    I think that there needs to be more emphasis on the important distinction between *handicap* and *impairment*. That distinction allows us to examine — and mitigate — that part of disability that is socially constructed, via change in the society, while not losing count of the part of disability that is physical and intrinsic. On the contrary, keeping the distinction between handicap and impairment in mind allows us to better identify and mitigate impairment that is truly intrinsic and truly impairment, as such.

    – Phil

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