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A Psychiatrist's Journey from Parent to Founder of Research Advocacy Organization

A Psychiatrist's Journey from Parent to Founder of Research Advocacy Organization

In 1988 I was working as a general adult psychiatrist with a specialty in addictions. One day, a newly referred patient came to my office accompanied by his mother. Although he was well groomed, he was distinctly "nerdy." When I inquired about his chief complaint, his mother quickly explained that, although he had graduated from community college, he was unable to secure a job interview due to his obsessing on the details of his resume.

I noted that her son spoke in a bizarre manner, using many idioms incorrectly. His mother noted my apparent distress and stated matter-of-factly that her son was autistic-as if she had a long history of explaining his behaviors to professionals. This young man was being medicated with thioridazine (Mellaril), although she did not feel it was very helpful.
We concluded our meeting by scheduling an appointment some months in the future. Without a calendar, my patient immediately identified the day of the week of each proposed date. When they left my office, I felt disturbed and unsettled by my lack of knowledge regarding this patient's disorder. Nowhere in my medical training had I ever seen an individual within the autism spectrum. My image of an individual with autism-I suppose from some picture in a medical textbook-was limited to a three-year-old who did nothing but spin or rock.

Not long after this incident, my 22-month-old son was diagnosed as having autism, often referred to as pervasive developmental disorder. I increased my efforts to learn all that I could about autism and related disorders.

The medical and, specifically, the psychiatric literature was daunting. The words "hopeless" and "no known treatment" occurred over and over again. Psychiatric articles suggested that haloperidol (Haldol) was the most effective medication, but about one-third of the children on it evidenced tardive dyskinesia after one year. Other articles declared that no medications worked and that it was best not to medicate. Visits to teaching hospitals yielded confirmation of the diagnosis with no pretense of having anything else to offer.

We were referred to the educational system, where it was heartening to learn that at least there had been progress made by behavioral psychologists who had developed educational methodologies which can have a significant impact on many children's outcome. However, there were only a few groups across the country undertaking research into the causes, prevention, treatment and cure of autism. My trip to the 1989 American Psychiatric Association Annual Meeting uncovered only one or two poster sessions on autism. I found a similar dearth of information and research at the 1993 Society for Neurosciences annual meeting.

Clinically Neglected

For several years, I pondered why there was such a lack of scientific interest in this disorder. Clinically, autism is a far from trivial disorder. In fact, it is fair to say that it is every bit as devastating as the worst of the psychiatric diseases. It strikes children between the ages of 12 and 36 months-sometimes manifesting with a sudden and rapid disappearance of early language acquisition. It is a lifelong disorder in which cute-often beautiful-children grow into very impaired adults. A large segment of the autistic community never acquires (or loses) all functional language and, even for those that do develop language, it is often unusual and alienating.

Socials skills are significantly impaired even in the highest functioning individuals with autism. A rigidity or attachment to sameness creates compulsive behavior on a scale matched only by the severest cases of obses-sive-compulsive disorder. Stereotypic movements are common. Severe sensory integration problems are well described in books written by some of the highest functioning autistic individuals. Descriptions-such as "when it rains, the sound on the roof is deafening, it sounds like it's drumming on my head"-only begin to give us an idea of what the subjective life of an autistic individual must be like.

The most severe behavioral problems present routinely. Aggression towards others and self-abusive behaviors are common, as is compulsive "picking" to the point of bleeding. Almost all of the routine aspects of life, including eating, sleeping and fundamental social awareness, can never be taken for granted. Some families with autistic members become housebound because the affected family member's behaviors preclude going out together in public.

One of my teenage patients with autism would destroy the supermarket shelves if the "wrong" color foods were there. Even among higher functioning autistic individuals, the social problems are enormous. I know of several cases of teenage boys who, in attempting correct social behavior, expressed their sexual desires to teenage girls inappropriately, and were taken away by the police.

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