Changing the Course of Autism--a 2007 Book--First Essay

New and fresh winds are blowing in the study, understanding and treatment of autism. Of all the books released on that subject in the last several years, I believe this 2007 book by the medical director and a board member of Thoughtful House in Austin, TX is destined to change the way that autism is perceived, treated and, we hope, funded. That such a book comes out of Thoughtful House is not unexpected. Chartered in 2005 as a joint effort of physicians, scientific researchers, educators and families with autistic children, Thoughtful House is especially interested in studying the biomedical basis of autism. This book, Changing the Course of Autism, is a first step in giving us a statement of what will, in my judgment, soon arise to a consensus in the field--that autism is a multi-faceted disease, and that the treatment regimens appropriate for one person might not be the same as another. But, in many, if not nearly all cases, those suffering from autism can be helped by an awareness of the biological, gastroenterological, toxicological, and immunological manifestations of the disease. This essay attempts to put Dr. Jepson's and Ms. Johnson's marvelous effort in the context of our developing understanding of autism; the next probes in more detail their interests in the book.

Coming to Grips With Autism's History

The term "autism" was only coined in the 1940s. In the sixty-five years since its coinage, the study of autism has gone through several distinct phases. As with most phenomena, the traces of earlier stages of research are with us still, both in positive and negative ways. At first autism was considered a psychological phenomenon, something whose etiology could be found either in inadequate or cold parenting. Children withdrew into "autistic aloneness" because they had subtly or not so subtly been pushed out of the family unit by over-achieving or cold parents. The term "refrigerator mother" to describe one half of the parental team adequately describes this approach. Because the first generation of autism researchers and treatment folk, led by Bruno Bettelheim at the University of Chigago, relied heavily on Freudian paradigms in describing the disorder, the natural assumption was to recognize autism as a dysfunction of the mind.

Even though that myth was largely dispelled by Bernard Rimland's pathbreaking 1964 book Infantile Autism, the psychological explanation continued, but in a different form. One of the ways that Bettelheim's general approach continues to dog the study of autism is in the conceptualizing it as a psychological or mental disorder. For example, in the third edition of the Diagnostic and Statistical Manual of Mental Disorders (1980), autism first made an appearance. Autism is not defined in its "essence" in this publication; rather it is described in its manifestations. The most recent DSM-IV (1994) talks about autism as a three-fold quantitative impairment: (1) in reciprocal social interaction; (2) in verbal and nonverbal communication; and (3) in restricted, repetitive and stereotyped patterns of behavior. Much water has passed under the autistic bridge since 1994, but when we realize that this definition appears in a manual of mental disorders, we see how the disorder/disease has continued to be Balkanized.

The two principal effects of this Balkanization are in the medical community and in "paying for" autism treatments. Since autism was on the "other" tree branch (i.e., the "mental" part, if we divide the treatment of people into physical and mental compartments), medical schools and physicians have therefore not been introduced to autism in their medical school training or, largely, in their practice. When this is the case, myths and ignorance persist, even if the ignorant statements are made by people with "M.D." after their names. Second, because autism appeared in the "mental manual," insurance companies could easily deny reimbursement to parents for services to their autistic children. Why? Because almost all medical insurance policies define "medical treatment" as treatment that is necessary to improve, ameliorate or, at least not worsen, physical conditions. Only with mental health parity laws in the late 1990s and early 2000s have some insurance companies grudgingly begun to pay for some treaments for those suffering from autism.

Thus, autism grew as it were in a field of weeds, where neglect of it hurt our understanding and old myths controlled our treatment. But four different strategies, pursued by different professionals, began to take root in the 1980s and 1990s, one of which strategies leads us to the consideration of Jepson's and Johnson's (let's just call them J & J's) book. First, some research psychologists, led by Dr. Ivar Lovaas, began to apply the results of behavior therapy, famously advocated by BF Skinner, to children with autism. Remaining agnostic as to the "cause" of autism, behavior therapists began to develop highly technical training mechanisms so that the person suffering from autism gradually would be able to learn how to do most things that "normal/neurotypical" people can do in managing their lives. Second, some education advocates, spurred on by the passage of the Individuals with Disabilities Act in 1975 and the potential for funding for services to disabled children, began to develp educational programs to train those with autism. Third, brain researchers began to apply their interests in the brain, which had been growing since the 1970s in the field of psychology, to the study of the "autistic" brain. Fourth, nutritionists and others began to look at the way that changing the diet of those afflicted with autism, through more generous dosages of B6 or B12 or other vitamins, might begin to affect behavior and ameliorate some of the distressing symptoms of the disorder/disease. Changing the Course of Autism is a book in the last category, but has, as will be shown in the next essay, raised the debate to such a high level that no one can really ignore the implications of its work.

A Few "Inexplicable" Facts

Before turning to the heart of J & J's book, I want to deal briefly with one or two more issues. Everyone agrees that the incidence of autism has increased dramatically in the last generation, with a huge spike especially noted in the 1990s and the 2000s. There have been, in general, two approaches to this spike. One approach denies that there is an autism "epidemic" or dramatic increase in actual cases; it attributes the increase in numbers to broader diagnostic criteria as well as greater physician awareness of the phenomenon. What might once have been lumped under the category of "mental retardation" is now largely put under "autism," according to this approach. But the other approach, which actually seems to be dominant in the field now, is that there really has been an explosion in the number of cases. A second "fact" follows closely in the wake of the first. Since there is no such thing as a genetic "epidemic," then one of the primary causes of the increase in documented cases of autism has to be environmental--something in the way we live or the way our bodies are put together as it confronts our environment may be the major culprit for the increase in autism.

But the explanation is not a simplistic one, as if one could point to one environmental problem as the "cause" of an autism "explosion." Much more likely, as J & J argue, is that there is a kind of autistic susceptibility in many people, which condition is then triggered by coming into contact with a complex cocktail of factors in our world. This is necessarily broad at this point because we are still in our knowledge-infancy in learning about autism. But it is the key observation that unlocks the method that informs the book. They will be trying to understand the way that various bodily systems are compromised by autism, as well as the way that some of those compromises might be removed or reversed through various kinds of biomedical, dietary, neurological or detoxification treatments.

With this as background, then, let's turn to their aims in the book.

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