The Autism Question — Cedar Sanderson
The recent discovery of what may cause autism was first brought to my attention by Peter Grant’s blog. I’ve since seen it several times since then, posted by gleeful optimists, but my first reaction wasn’t sheer joy. You see, I have a little sister who is autistic. However, as Peter points out, many creative type folks – including many people I know, and perhaps even myself, also show signs of autism.
The problem is, what was once a nebulous diagnosis limited to those who were almost completely withdrawn from the world is now applied to anyone who displays social awkwardness. I’m not going to get into the subtle workings of the brain, in any depth, as I’m not the person to talk to about thingies in the brainies (although perhaps one of those worthies will drop by in comments).
I’ll start with the International Handbook of Autism and Pervasive Developmental Disorders. “Autistic spectrum disorders (ASDs) are characterized by impaired social interactions and communication, as well as restricted and repetitive behaviors and interests. Impairment in each of these dimensions can vary in severity, and symptomatologies among individuals with ASDs are often quite diverse. Over the past 20 years, there has been a marked increase in the diagnosis of individuals with ASDs. In 1966, Lotter undertook the first epidemiological study of autism, estimating the prevalence of autism disorder to be 4.5/10,000. Two decades later, the estimate rose to 10.1/10,000. Currently, the community prevalence of ASDs is estimated to be at least 36.4/10,000, with some estimates as high as 67/10,000. It has been suggested that this increase in the number of cases of ASDs is due, at least in part, to more inclusionary definitions of disorders within the autism spectrum. While more in-depth discussion of this increase in ASD prevalence can be found elsewhere, there is at least some suggestion that changes in prevalence may be due to changes in, and broadening of, the diagnostic conceptualization of ASD. “
However, while at one end of the diagnostic criteria lies my sister, who is a lovely person, mentally about four, physically around thirty, on the other is me. You all know me, some have met me in person. I’ve never been tested for autism, I refused to even consider it when it was suggested not too long ago. I’m a functional adult, and I don’t need that label hung on me. Because the ‘high functioning’ end of autism, which was recently (and still, I think) called Aspergers, is more a psychological diagnosis than a physical one.
While doing research for this essay, I came across an article that was published in the New York Times, entitled “I had Asperger Syndrome. Briefly.” which succinctly lays out my concerns with the over-diagnosis of people with autism. “I exhibited a “qualified impairment in social interaction,” specifically “failure to develop peer relationships appropriate to developmental level” (I had few friends) and a “lack of spontaneous seeking to share enjoyment, interests, or achievements with other people” (I spent a lot of time by myself in my room reading novels and listening to music, and when I did hang out with other kids I often tried to speak like an E. M. Forster narrator, annoying them). I exhibited an “encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus” (I memorized poems and spent a lot of time playing the guitar and writing terrible poems and novels).” Nugent goes on to explain that as he got older, and developed, his mother, who had diagnosed him and applied the label to him, realized that he was not on the autism spectrum.
While the Federal Education code lays out a much stricter criteria for diagnosis, we have already seen that parents and doctors adhere to no such standards. Which brings me back to the article and study published in the Daily Mail.
If, and it is a very big if, they have truly discovered the cause of autism and Aspergers, what do they propose to do with that? While perhaps such treatment could reveal my sister, as we glimpse her now through a veil, an engaging person with an impish sense of humor, a temper, and a distinct personality. Then the veil falls again and she is out of reach. I would go far for a treatment that would lift the veil forever. But what if it doesn’t work? And how will we know? Will they decide to use people like my sister, deeming them not contributors to society, as guinea pigs. Yes, I know that would be unethical and illegal with today’s laws… If a fetus capable of drawing breath for their first cry can be deemed a non-person, what protects my sister?
And that same treatment, the neural pruning, if applied to an adult, what would happen? Would we creatives lose our social awkwardness, that need to flee a crowd because it’s all just too much, the shying away from direct contact that overwhelms us? Or would we also lose our weirdness, that which makes us Odd and able to create? No-one knows. We simply don’t know what the brain does, internally, well enough to plunge into declaration of a ‘cure” much less implementing it.
I’m never one to seize on a ‘new discovery’ and this one has me taking a step back and hesi – no, I’ll admit, the first words out of my mouth on reading it were unladylike. I immediately saw where it could go, and folks, it ain’t pretty.
I’ll finish up with this: the history of eugenics and mental retardation. “ In this country, attempts to eradicate the population of individuals with mental retardation can be traced back to the emergence of eugenics in the latter half of the 19th century. Francis Galton’s theory of eugenics was aimed at improving the “inborn qualities of a race.” One of the objectives of proponents of this “science” was to colonize and sterilize all undesirable subgroups in the United States. Half of the states adopted laws that forbade marriage for individuals who had mental or emotional impairments. In the 20th century, sterilization was used as a means of controlled breeding. In 1911, the American Breeders Association was established to study the reduction of the mentally retarded population. By 1926, sterilization laws had been passed in 23 states that made sterilization mandatory for “mentally deficient” individuals when recommended by the courts (Rubin & Rosseler, 1994). These laws ultimately resulted in the involuntary sterilization of over 60,000 individuals with mental retardation and mental illness by the year 1960 (Reilly, 1991).” Later in that same article, “There are no national or even regional statistics reported in any publication on the incidence of elective abortion that follows a prenatal diagnosis of Down syndrome. The only information available is from those individual diagnostic or treatment facilities that maintain such records and permit disclosure. Although current statistics were not available, between 1984 and 1987, 88% of the women at Washington University Medical Center who were informed that they were carrying a fetus with Down syndrome elected to abort the fetus (H. Beaver, personal communication, February 24, 1993). Similarly, P. DaVee of Indianapolis University Hospital reported that of the 1,125 clients tested in 1993, 29 (2.6%) indicated abnormal fetuses (personal communication, December 13, 1993). Although statistics were not available, she reported that most of the abnormalities were Down syndrome. DaVee concurred that, based upon her experience, nearly all of the fetuses carrying Down syndrome were aborted. These findings appear to indicate that genetic testing as a logical extension of eugenics is indeed being used as a means to screen for and then prevent the birth of persons with Down syndrome.” (Ethical and legal issues regarding selective abortion of fetuses with Down syndrome By: Glover NM, Glover SJ, Mental Retardation, 00476765, Aug, 1996, Vol. 34, Issue 4)
I had a personal brush with this. While pregnant with my son, I had an ultrasound. That evening, we got a rather concerned-sounding voice mail from the doctor, telling us that the fetus had a marker for Down’s, and we needed to come in for an appointment to discuss options. My immediate reaction was again explosive, unladylike, unprintable, and boiled down to “he’s 27 weeks old. There is only one option, and that is we will love him.” For those wondering, short legs run in the family on his paternal side, and he inherited short femurs… but nothing else. He’s a bright, energetic, engaging young man now, at nine years of age.
Before we start looking at cures, we must look at the consequences. What happens without those neurons? If you treat very early in life, then the person will never miss them. But we might also miss out on what would have been. Do we risk the people we already have, to see a cure for those who are coming now? How much of the autism spectrum is real, and how much a convenient excuse for people with an agenda? And when will pregnant mothers start making decisions about their children based on some genetic test which might or might not be a reality?
I can’t begin to answer all the questions. Nor can the scientists who did the original study. Perhaps in time, we can be more certain. But not yet, and I wouldn’t be willing to risk my precious sister to it.