Wednesday, March 07, 2007

Great Parenting makes a great difference

While the Refrigerator Mother hypothesis has been discredited as a cause of autism, it was seemingly never addressed as a symptom of a reaction to an autistic child. Bluntly, while "refrigerator parents" do not cause autism, they do cause tremendous disability and damage that persists for a lifetime.

In one critical respect, autistic children are no different than other children; we are keenly aware of our parents and how they feel about us.

For good or ill.

The video here is a record of advocacy from a 9 year old autistic young man who uses a keyboard to do most of his verbal communication. He is identified as "D" here.

He was part of a panel hosted by an autism organization. The audience submitted written questions to all the panel members, some of whom were diagnosed with Asperger's syndrome and some with autistic disorder (Kanner autism, core autism, whatever folks are calling it this week).

D's answers were intriguing, at times puckish and inciting as well as insightful. (Autism Diva is trying to follow in D's charming footsteps and use more erudite and scintillating parlance.) D's answers are recorded here on this video made by D.

We are certainly aware if we are felt to be a cross to bear instead of a treasure and a joy. We are also keenly aware when love is conditional upon behaving as if we were not ourselves, conditional on telling them what they wish to hear rather than what is true and real for us. We especially learn that our perceptions of how others treat us is unwelcome. Wait, perhaps that was just me. But when I came home, crying and bleeding with various injuries - the first thing I was always asked was what I had done to deserve it.

I have no idea what my diagnosis as a child was - my parents were very secretive about that - but I'm sure there were several. Probably one was "childhood schizophrenia," given the era. But I do know that I had my head candled many, many times and the results were always, obviously and clearly, my fault.

This is absurd, of course, and even then I was reasonably well aware that my parents were neither reasonable nor rational on the subject that was me. But the net result was that my parents completely overlooked everything about me that was potentially valuable while focusing intently on all my manifold "flaws," which were always related to being insufficiently like the other children they kept trying to force upon me - at any price.

Meanwhile, they went to great lengths to sabotage my interests and to interrupt my perseverations; communicating to me that if I was interested, it was therefore inherently valueless. Had a "normal" child shown the same abilities and interests as I, they would have been turning handsprings. Moreover, I showed no tendency whatsoever to engage in "normal" adolescent stupidities, such as drinking, compulsive risk-taking or engaging in pointless athletic mating display contests. (That was my perspective at the time. Now I rather regret missing a small portion of my share of the above; I do wish someone had bothered to explain the point to it all.)

While this gave them much less to worry about in a real sense, my mother at least found a great deal to fuss about in the realms of the unreal and untrue, while managing to overlook almost everything she could have usefully addressed, such as abuse - mental and physical - by schoolmates and teachers that has left me with permanent and surely apparent emotional scars.

I was frequently told that what happened to me was my fault for "not fitting in," the delusion compounded by the assumption that I would have been allowed to fit in under any circumstance. Alas, when a child (or adult) is identified as a legitimate target, nothing that person can do to change their status within that social matrix. They must either escape that matrix, or be destroyed by it.

It is not surprising that adolescents with AS spectrum issues suicide at a rate that has been cited as being as high as thirty percent. It has nothing to do with autism, per se; it has to do with abuse, rejection, humiliation and depression resulting from repeated failures to fit in with the antinomy of being told by everything around them that they would be loved, accepted and valued if they did fit in.

The tragedy is that the autistic mind is adapted to function best apart from and outside of a social dominance hierarchy. So much of the "best advice" is 180 degrees incorrect, starting with the presumpton that a lack of a broad social network is the result of, or the cause of, emotional deficits and damage.

In fact, autistics need a small number of intensely dependable and deep relationships; those outside of that circle will tend to be activity-based relationships rather than emotional ones.

It's a profound difference, one that seems very difficult for Neurotypicals to understand - but it is nonetheless true of AS spectrum people to a broad degree, to the point that it seems fall within the range of "autistic-normal."

I've often wondered what I'd be like had I been raised by sane parents, or, frankly, even wolves.

D's example; a nine-year old boy who is valued for what he is, rather than devalued for what he is not tells me that's all the "cure" that we autistics require.

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