Autism: A Lifelong Challenge

by Guy McKhann, M.D.

October 12, 2010

Much of this month’s issue is filled by a long article from The Atlantic describing the first patient diagnosed with autism, Donald Triplett. Triplett was first examined at Johns Hopkins by the child psychiatrist Leo Kanner. In Kanner’s initial report of 11 subjects, entitled “Autistic Disturbances of Affective Contact,” he outlined detailed histories of the children’s behavioral development up to about ages nine to 11.

I was somewhat familiar with Dr. Kanner on a personal basis. I first came to Johns Hopkins as a pediatric resident in July of 1956. He was nearing the end of his career; I was starting to get interested in the brain, but wasn’t sure how to proceed when I heard Dr. Kanner lecture and asked if I could speak with him. He and his protégé, Dr. Leon Eisenberg, (who went on to a distinguished career at Johns Hopkins and Harvard), spent more than three hours with me, discussing their field of child psychiatry and its opportunities. I will always be grateful to these academic giants for their generosity with their time and interest.

What Kanner originally described as “autism” was considered uncommon (it took Kanner five years, from 1938 to 1943, to collect his first 11 cases). There is an interesting analogy between autism and Alzheimer’s disease in this regard. Both were considered quite rare: They were recognized as distinct entities that one might see just a few times in the extent of a career.

Alzheimer’s first case, described in 1906, was a woman in her 50s who was labeled as having “presenile dementia.” It was only in the 1950s that it was recognized that the dementia in older people, often called “senile dementia,” had essentially the same pathological hallmarks as those found in the presenile cases. Thus the common entity we know as Alzheimer’s disease was established, and terms such as “senile dementia” and “hardening of the arteries” have all but disappeared.

In the case of autism, there is such an increase in numbers that some even refer to it as an “epidemic.” The reasons for this apparent increase are not entirely clear. Some is related to increased awareness (more cases being reported); part is related to changing criteria, such that we now refer to an “autism spectrum” to include not only the classical cases Kanner described but also less involved children and also adults. Many children who previously were identified as “retarded” or “schizophrenic” are now included in this spectrum.

The article in The Atlantic by John Donvan and Caren Zucker is essentially an extended case report of Kanner’s first subject, referred to as “Donald T” 67 years ago. Their descriptions of these intervening years reflect not only the attempts of Donald’s parents to carve out some type of life for him, but also the changing attitudes toward mental disabilities in our society. While contemplating this article, it is worthwhile to go back and read Kanner’s original article.

Besides the description of the children and comments about the uniqueness of the syndrome he was describing, Kanner added several observations that have been the focus of controversy over the years. The first was that the parents were highly intelligent. This may have been a reflection of the type of parent who would, and could, come to Johns Hopkins for consultation at that time. The second was that there was “a great deal of obsessiveness in the family background. Donald T’s father sent a 33-page summary of Donald’s history before Dr. Kanner even saw him. The third, and the one that caused the most difficulty, was “there were very few really warm hearted fathers and mothers.” This last statement was elaborated on later by psychologist, Bruno Bettelheim, who greatly expanded this observation to develop a theory of autism based on the emotional frigidity of the parents, particularly the mothers. This thinking essentially shut off approaches to the biological factors, particularly genetics, associated with autism. In addition, many families subjected themselves to various forms of psychotherapy based on the “refrigerator” concept.

In a thoughtful article, Gerald Fischbach, the former director of the National Institute of Neurological Diseases and Stroke (NINDS) and now of the Simons Foundation, analyzes Kanner’s article from a more modern approach, emphasizing the search for genetic factors, interaction with environmental factors, and biomarkers such as changes seen on brain imaging scans.

If one wants to appreciate the vagaries of the human mind, read Kanner’s article, the Atlantic piece, and then contemplate Fischbach’s article. We have a long way to go, but the results will be more than worthwhile.