WORLD OF LEARNING: MY REVIEW OF "UNSTRANGE MINDS"

UNSTRANGE MINDS: REMAPPING THE WORLD OF AUTISM: A FATHER, A DAUGHTER, AND A SEARCH FOR NEW ANSWERS. By Roy Richard Grinker. Basic Books, 2007. 301 pages.

The subtitle on the cover of Richard Grinker’s Unstrange Minds: A Father, a Daughter, and a Search for New Answers might give you the idea that his book is a memoir. And in part, it is. The struggles and rewards Grinker and his family go through as they raise, and grow with, their autistic member, the unforgettable Isabel, are touchingly told.

Unstrange Minds is much more than that, though. Grinker is an anthropologist, and he knowledgeably writes about how the definition and treatment of autism differs in relation to culture. He recounts his journeys to South Korea, South Africa and India, where he interviews the parents and educators of autistic children. He investigates the way different societies and governments deal with developmental and mental disorders.

It was interesting to learn that people with such disorders are more likely to be become participating members of their community in rural areas than they are in cities. It was also encouraging to find out that even though we still stigmatize and have a long way to go, America is probably one of the better places to be if you are autistic.

The first half of Unstrange Minds, however, is neither memoir nor anthropological treatise. It is an excellent, and invaluable, primer on the history of the diagnosis of autism, the study of its causes, and the treatment of its symptoms. Looking at that history, Grinker questions whether the increasing recognition of autism is the sign of an epidemic, or the result of more sophisticated diagnostic tools. He comes down on the side of the latter.

The history of autism as a diagnosis is quite a recent one, starting with the work of Leo Kanner and Hans Aspberger in the 1940s, and moving into the infamous work of Bruno Bettelheim in the 50s and 60s. Bettelheim, who was neither an MD or a psychiatrist, whose clinical studies were without scientific merit, was a superb self-promoter. On the basis of a popular book, The Empty Fortress, he became an "expert" pursued by media—an expert who blamed autism on bad mothers.

Diagnosing diseases of the mind through subjectivity and moral judgment is, of course, nothing new. Grinker points out that the DSM (the Diagnostic and Statistical Manual of Mental Disorders)—what people in psychiatry, psychology, medicine and health insurance use for diagnoses—didn’t exist until the 1950s, when it included homosexuality as a mental disorder. Autism and ADHD—not even mentioned.

Homosexuality was not downgraded to normal human behavior by the psychiatric establishment until the 70s. It took until the 1980s and 1990s for autism and ADHD diagnostic criteria to be listed. These changes are the reason you see DSM-II, DSM-III and DSM-IV, and taking it further, editions with an R added, for further revision. DSM-V is on the way, with more, and major, changes.

Clinicians who make use of these diagnostic criteria have a lot of latitude in their interpretation. It's never going to be completely objective because evaluating behavior like "lack of social or emotional reciprocity" is by nature subjective, and because clinicians often diagnose to the category that gets resources from insurance companies, school districts, etc., etc. The DSM hedges its bets even further with the "NOS" qualifier, as in PDD-NOS (pervasive developmental disorder, not otherwise specified), used for diagnoses close to autism that don't present the complete range of symptoms. All of this, Grinker points out, is heavily influenced by changing social views toward mental and learning disorders. An obvious example is our attitude toward the word "retarded."

The benefit in realizing the labeling is confused at best is that it means doctors and clinicians are working toward more objective analysis and categorization. That’s progress. Grinker is hopeful because the medical establishment is paying more and more attention to an identifiable set of symptoms, rather than beginning with causes. How can we know what causes something until we really know what it is? More importantly, how can we treat it?

The problem with the confusion for American parents with autistic kids, and for that matter any kids with learning differences, is the great difficulty they face in having our society and its educational system recognize, and do something about, the differences. All children should have the opportunity to measure up to their potential.

The Individuals with Disabilities Education Act (IDEA), Grinker notes, "wasn’t set up with the expectation that parents would be involved in extensive litigation, or that pit-bull attorneys would try to reduce witnesses to tears over the correct placement of a child with special needs." It often seems we are spending more to keep kids from moving forward than we are on helping them to do so.

Grinker takes the reader through his own frustrating trials to give Isabel the best possible chance of success, and the disillusionment it causes him. In the end, he still believes that "things have improved since autism became a more popular diagnosis."

And he finds solace in looking for light instead of darkness in the love he has for his wonderful daughter. Isabel has helped Grinker realize "there is no pure, natural, or singularly correct way of seeing," and "to think more creatively about the kinds of meaningful relationships that are possible, and beneficial." Besides that, she is a pretty good cellist (with perfect pitch!) and an accomplished amateur zoologist.

Grinker has combined the personal and the professional parts of his life to produce an extremely well-written introduction to autism.