Thursday, March 10, 2011

The Developmental Disabilities of Developmental Scientists

I've generally been too burnt out by the simple fact that most people like the world the way it is to do much serious writing. My burn out has been increased by the fact that part of me is comfortable with the status quo and fears real change just like everyone else.I've tinkered with fiction and I've dabbled in some paying work (all in the area of boxing writing)but that's it. The little serious writing I've done has been about philosophy, theology, and morality in the hopes of shifting the focus of this blog from political symptoms to the underlying intellectual, spiritual, and moral condition.

My discovery of The Autism Crisis has compelled me to try to turn my hand to something semi-political, though my real concerns are the moral and intellectual motivations behind the politics. The blog's theme is the science of ethics of autism research in an environment where said science is solely driven by advocates of specific autism-related agendas not necessarily terribly concerned with autistic individuals. The degree to which the issue seamlessly fits into my view of modern sociopolitical philosophy got my fingertips itching.

My personal interest in autism science and advocacy started with an entirely selfish interest in ADD/ADHD science and advocacy. My childhood academic experience was about as pleasant as someone who has seen me characterize the US system of education as "sadomasochistic" might expect. Some of the problems came from my attitude toward school and teachers and some of them came from the attitude of schools and teachers toward me. The degree to which the US school system and I came to loathe each other eventually required my parents to try find a home schooling program that would be compatible with my desire to learn rather than to perform busywork for the justification of the system. Ultimately I was fortunate to live in a state (California) that gives a high school diploma to anyone able to pass a test that proves they learned what they were supposed to learn in high school.

The merits of the educational system and the value of a standardized test are issues for another time. Suffice it to say that I passed and it was the only way out of what I perceived to be a Hellish experience. My interest in ADD, ADHD, and Ritalin were driven by a desire to acquire a "normal" tolerance for the useless busywork that life too often demands we perform and to be willing to settle for doing a job as I was told to do it instead of doing it in such a manner that it was finished and finished correctly. I wanted to know if I was suffering from ADD or ADHD and I wanted to know if Ritalin would help me. To this day I do not know what my actual "diagnosis" would be, were I to seek one out, because my investigation led me to the conclusion that all of the science on the topic was fundamentally flawed.

The following is quoted from the ADHD entry on PubMed Health,a website for which ultimate responsibility lies with the National Institutes for Health. If the NIH espouses a different definition, it is not on their website, so I will take this quotation to define the condition as the NIH sees it:

ADHD is a problem with inattentiveness, over-activity, impulsivity, or a combination. For these problems to be diagnosed as ADHD, they must be out of the normal range for a child's age and development.

The words "the normal range for a child's age and development" are important. They imply an authoritative baseline to judge the presence of a developmental disability that requires treatment by means of a powerful mind-altering drug.

ADD/ADHD science is based on a pair of serious epistemological errors that Bertrand Russell or John Dewey would easily be able to point out to the scientists involved. The first of these errors, and perhaps the most severe, is the conclusion that the use of the word "normal" involves an objective intellectual judgment rather than a subjective intellectual judgment. The second of these errors, which would be a horrendous mistake even if the judgment process behind the word "normal" were properly understood, is to equate the process of judging what is "normal" by the mathematical study of averages. Thus "normal" is defined as "average."

The problem is that an "average" is not a discrete thing. It is an abstract mathematical construct. It does provide a baseline for comparison but it does not provide any sort of guidance in judging the validity of the comparison. The "average child" on whom ADD/ADHD science depends does not exist. They are merely an imaginary construct whose only purpose is comparison with the individual. The matter is complicated by the fact that any child psychologist not on mind-altering drugs themselves will tell you that "inattentiveness, over-activity, impulsivity, or a combination" are in fact normal symptoms of a condition called "childhood." So we have a situation where evidence of normal childhood behavior is justification for a diagnosis of mental abnormality based on an arbitrary prejudice regarding "desirable" behavior combined with an imaginary baseline construct telling us how much "normal" is too "normal."

This flawed diagnostic system is broken entirely by the fact that behavior symptomatic of ADHD can also be a specific response to specific stimulus under specific conditions. The child who does not do his assigned homework because they believe the classroom exercises sufficient and who, instead, reads ahead in their textbook for the following day's lesson and then goes to basketball practice is making a rational decision. When such a child has prepared for the next day's lesson and expects to work on that lesson but instead finds the class bogged down in the review of the previous day's lesson in the form of homework analysis, it would be terribly abnormal if they were attentive. When said child also gets an "A" on all class tests it could further be considered normal for the child to receive a "D" in the subject they have clearly learned so well. All of this a natural consequence of a classroom environment created by valuing social promotion over the gradation of learned skills and the completion of assignments over actual learning.

None of us should be surprised that forced medication of students is preferable to school districts over the trouble and expense of giving individual children attention based on their individual educational needs and accomplishments. The parents' health insurance foots the bill rather than the school district. What should surprise us is that the majority of ADD/ADHD "science" is undertaken in support of educators with the purpose of controlling children they do not know how to teach. Many parents of kids diagnosed with ADD have been fighting this tooth and nail. They see the effects that mind-altering drugs have on their children outside the classroom. The "scientists" don't care.

My personal view, that ADD and ADHD do not exist at all but are merely convenient labels to allow school systems to drug students that resist sadomasochistic institutionalization, is not necessarily widely shared. However the parallels with icepick lobotomies in mental institutions in the 1950s and 1960s are worthy of consideration. Both "treatments" consist of the destruction of individuality to suit the needs of the institutionalizing system.

It is the issue of questioning the motivations behind the science that brings me back to Michelle Dawson's blog and this article. The subject of the article is a study advancing a specific thesis about autistic understanding of spatial relations. Their findings were not pleasant:

The press release starts by declaring that autistic children "lack visual skills required for independence" and does not exaggerate the claims in the paper, which merit a lot of scrutiny. So bear with me, this is not going to be short. First what they did (and didn't do), then what they found, then what it means.

The statement Ms. Dawson quotes from the press release encapsulates the high-minded science of the study quite succinctly. The study minimizes some of the real learning advantages studies have found autistic individuals to possess by dismissive their usefulness in "the real world." Rather than design a "real world" test of "visual skill", however, the actual study constructed an elaborate simulation that did not even directly test visual skills!

This attitude can best be described as a belief in the virtues of conformance, submission to authority, and the abdication of individual responsibility to expert opinion as recognized by the institutions that expert opinion serves. Teachers unduly burdened by students with ADD/ADHD are not able to properly teach the rest of the class, we are told. Parents burdened by autistic children are handicapped in every other area of life. In neither case is the individual diagnosed with a disability the victim of said disability: instead, through their disability, they are the means of someone else's victimization.

Something whose combination of symptoms we choose to label "autism" clearly exists. It is not so easy to argue that the symptoms of autism are as "normal" as the symptoms of ADD/ADHD. Even if ADD/ADHD does exist, however, teachers aren't its victims. The kids are the ones suffering from the school system's INability, as well as their own DISability. They deserve better. How much more insidious and dangerous is the scientific attitude that autistics are not the victims of autism but, rather, society and government are the victims of autistics?

I've talked more about the specific issue of ADD than I intended and less about autism, but the real point in all this is not either specific issue. It is a culture of institutionalization in which elaborate systems are developed for every stage and facet of life and people are deemed worthy or unworthy based on their ability to fit into those institutions. Science must serve fact and not institutional values.