To recap the history of autism briefly:
The word as currently understood stems from the 1940's Leo Kanner being the first to make any widespread impact on the research community. From the very beginnings, the ‘disorder’ was enveloped in controversy with early psychodynamic attempts at explanation, culminating in Bettelheims famous (but subsequently proven to be erroneous) 'refrigerator mother theory' A whole book could be (and has been) devoted to Bettleheim’s ethical and scientific malpractice.
However this approach was successfully challenged in the 60's from an organic perspective. This int turn has given rise to a lot of misplaced theorizing, for example the vaccine causation controversy which still grips the public mind despite there being no objective evidence for it whatever.
The controversial aspect of autism’s history that brings me into the equation as a partisan commentator occurred a little later in the 1980’s with the recognition of a wider autistic spectrum due to the work of Lorna Wing, Uta Frith and others who uncovered and popularized Hans Asperger's account (which had hitherto received little coverage outside of Germany due to it’s never having been translated, and it’s unfortunate association with Nazi Germany as Asperger, unlike fellow Austrian Kanner continued to practice in the old country.
It is a mistake to assume that the notion of the 'high functioning.' autistic only came to be recognised after the discovery of Asperger’s work. From the very beginning Kanner assumed that his patients had intelligence, albeit somewhat inaccessible due to the apparent severity of its manifestation, and the once popular figure of 75% adduced to demonstrate that Autism is primarily associated with Mental Retardation, has been shown to be a ‘meme’ introduced into the literature from a single paper which never validated the claim, and propogated throughout the literature without being challenged. (peer review is not perfect because once a mistake slips in the citation process can keep it going a long time) Indeed I do not think it is irrelevant to state that some of Kanners original patients went on to become college graduates.
The problem comes when one considers the public climate of autism that has been consciously invoked by media misrespresentation of the research and the deliberate invocation of the tragedy model of fund raising to imply an autism epidemic, whose consequences to the planet are so severe one would almost expect that only Van Helsing has the solution. The appeal to the sympathy vote for people to dig deep into their pockets to fund the search for a magic bullet, has had severe repercussions for those who have the condition, and just want to get along with their lives with the help and intervention that science supports and not have to be considered like some zombie plague.
The call for Brain Tissue donation is very much predicated on the notion that only the heroic intervention of science will prevent this modern scourge which they portray as the worst thing that can happen to any family, worse than cancer because it leaves it’s victims alive as an emotionless uncommunicative parody of human existence whose only future is costly institutional care.
Of course Autism Speaks are not entirely to blame for this, they only fit within a bigger picture of charitable organizations, formed for the best of motives, but embodying the personal tragedy model which is counterproductive for those children when they grow up.
It is tactless in the very least to imply to anyone struggling with the disorder that they or there loved one leads a life that is so terrible and meaningless that it can only be redeemed by contributing (after death) to a research programme that will prevent their like ever being seen in the world again.
Tactless indeed when you consider that there are a population of socially aware adults with the disorder, nothwithstanding families who take a more positive attributional style to raising an autistic member when you consider that the brain tissue can only be harvested when the participants no longer have any use for it. Ie. When they are dead.
Inherent too in the notion that this brain harvest to be of maximum use for research needs ripe young brains, before the additional degradations of age and wear come to complicate the conclusions that can be drawn. This is in the nature of the requirements given autism's status as a developmental order, and implies that the most valuable donations can only come through personal tragedy, of dying young, in a situation (hospital perhaps) where an autopsy can remove the brain.
Now I sincerely hope that most families however they structure the attribution of the ‘disorder’, as tragedy or not, would rather have a living autistic member than have to deal with a life cut short by accident or disease with all the implication that the brain will not contribute in any way to the amelioration of any living subject, as an organ transplant might. The implication to me is very clear that the message is that the an autistic life is so not worth living that the most positive outcome of it can be to ensure that such a life never occurs again.
Is this programme unethical on the basis that it has negative repercussions on the target community in terms of self esteem and a more positive attribution?
No I cannot say so on that evidence alone, no matter how I feel about it, but I can consider it a contributory factor when coming to the other two issues - informed consent and scientific usefulness.
Stay tuned ………