Contrapuntal, I regret my lack of diplomacy in refusing to verify personal details about Amanda. I don’t generally run background checks on my friends, and the friend in question has endured more than her fair share of investigation into her personal history. To generally address your concerns about the apparent incompatibility between certain autistic people’s impairments and their abilities, achievements and aspirations, I recommend Leo Kanner’s article, “How Far Can Autistic Children Go In Matters of Social Adaptation?” (Neurodiversity in Business). It’s a long-range follow-up study of the cohort of children originally described in his 1943 paper, “Autistic Disturbances of Affective Contact” (Neurodiversity in Business), and offers some telling illustrations of the ability of autistic individuals to develop over time.
tomndebb, my apologies if my first post seemed like a personal attack. It’s a challenge to express deeply felt offense in an impersonal manner; I sought to criticize conclusions, statements and convictions, rather than personally condemn the people who expressed them. My “disclosure” was intended as just that; I meant to disclose the subtext underlying part of the interaction – subtext of which your regular readers were probably unaware – offer a cite regarding my own part in creating that subtext, and move on to substantive matters.
EJsGirl, congratulations on your son’s progress; it sounds like you’ve provided him with the support he’s needed, when he’s needed it. ConcernedParent, I hope your son is doing well and getting the educational and social support he needs. I hope that he has benefited from some of the treatments and therapies that you have tried, and hope that he has not been harmed by those that have not lived up to their promise. I wish your family all the best.
DSeid, thanks for acknowledging that my website links to sites that reflect perspectives with which I might not agree. My “point” in this endeavor is to enable access to a wide range of information and opinions, including those with which others might vehemently disagree.
I don’t think it’s appropriate or productive to pathologize a person’s concern for the ultimate use of information collected through genetic research by likening that concern to a “paranoid delusion.” The ethics of genetic testing and selective abortion (aka “primary prevention”) are the subject of extensive, justifiable debate among medical ethicists and disability rights activists. (See http://www.virginia.edu/uvanewsmakers/newsmakers/caplan.html, Utilitarian and http://www.ragged-edge-mag.com/0799/b799ps.htm for a taste.) With respect to the original subject of this thread, the GTTO site does not delve into the subject of genetic testing at any great length, although other writers certainly do. I have found only one instance of the word “genocide” (at Getting the Truth Out) – “Meanwhile, worldwide, like many other disabled people, we are devalued, abused, denied communication systems, starved, neglected, underemployed, forcibly drugged, wrongly incarcerated, murdered, tortured, and subject to genocide.” I do not regard this as inflammatory, but as an accurate characterization of the systematic extermination of 80,000 physically and cognitively disabled people in 1930’s and 1940’s Germany. (See Mark Mostert’s Useless Eaters: Disability as Genocidal Marker in Nazi Germany [School of Education | Regent University] for more background on this.) Amanda’s essay, “Just Look At Them And You’ll Understand” (ameliabaggs.com — Domain default page) discusses genetic screening from the perspective of a member of a class of people who might be the target of such screening. It’s certainly a perspective worth considering; in the essay, that perspective is expressed in a pointed yet civilized manner.
I do not presume to be a “representative of the neurodiversity movement.” I own the domain name, but not the meme. Each person for whom that meme has significance will have their own take on its meaning and their own perspective on many different issues. My own opinions are all over my weblog and in numerous letters to editors and others that I have written over the years. These opinions do not include wholesale opposition to early education or other effective “treatments and therapies,” allowing autistic children to “run amok,” passively accepting violent or self-destructive behavior, withholding effective means of enabling development of communication skills, or advocacy for indiscriminate provision of public benefits to those who do not really need them. These opinions do include a general opposition to the misrepresentation of scientific evidence in the marketing of various “treatments and therapies,” some of them promoted as cures for autism; these include overpriced nutritional supplements and regimens, chelation, and off-label administration of other pharmaceuticals such as Lupron and Actos.
To concur with another of DSeid’s statements: “Adults with moderate to severe autism cannot get by independently. They need services and a structured predictable environment. Providing that requires money. That is the truth… “Cure” is not an option, but helping them manage so as to be disabled as little as possible, that is possible.” Physical and cognitive difference and disability are part of the human condition. Human interdependence is part of the human condition. If disability is a consequence of harm, of course the source of harm should be identified and removed. One example where this was accomplished: the MMR vaccine, which made a very real difference in reducing the incidence of rubella, which consequently helped to reduce the incidence of cognitive impairment caused by rubella. At the same time that researchers are conducting their research into the causes of autism, and seeking to minimize harm, autistic people need to be enabled to make the best of their lives. That’s why I focus on supporting research and services aimed at improving quality of life for autistic people.
If it matters, I do have a Ph.D. and am currently in clinical practice. The two guys you cited also have Ph.D.s, so I don’t have the faintest idea what their higher education involves.
