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Lovaas Institute and Social Security office: A bitter irony

an article by Jonathan Mitchell

I now feel I am at the point where my autism spectrum disorder prevents me from engaging in “substantial and gainful employment.” I have decided to apply for social security disability insurance. I enter the social security office. I submit to a metal detector search by the large, intimidating guard. I wait an hour before my number is called and I submit my application and paperwork to the unsmiling bureaucrat .

Recently my independent contract medical transcription job of 9-1/2 years ended when a computerized system the hospital obtained cut our workload in half. I tried to obtain another job but I was fired from two different jobs. I have now been fired from approximately 20 jobs. I have difficulty concentrating on work and often make careless errors. Medical transcription is a demanding field where you have to try to transcribe physicians dictation that is often, unintelligible and sometimes garbled by foreign physicians.

I am awestruck by the irony that located on the same floor as the social security administration office’s branch near my house in West L.A. on Olympic Blvd is the office for the Lovaas Institute for Early Intervention which claims to save autistic children from life on the dole, the same fate which has befallen me! Ivar Lovaas is the renowned psychologist who was the pioneer in treating autistic children with behavioral therapy in order to teach them normal skills of daily living and to control their autistic behaviors.

In 1987, Lovaas published a well-known study in which 38 autistic children participated . 19 of the children were placed in the experimental group and received 40 hours a week of the behavioral therapy that Lovaas developed. The 19 other children were placed in a control group which received only 10 hours of the treatment. Nine of the nineteen children in the experimental group achieved normal intellectual functioning as measured by IQ test and were able to complete a normal first grade class in a regular education school. Only one of the nineteen controls received this result. This study has been used to claim that early intervention with autistic children will enable them to have productive working lives rather than facing life on the dole. Under current special education law parents have the right to a “free and appropriate” education for their disabled children. If the school districts do not pay for these treatments the parents have the right to litigate to obtain them. Lovaas’ study is used as evidence in court of the efficacy of this treatment and the parents right to obtain this costly treatment at taxpayer expense. A variety of books have been written by parents of autistic children claiming efficacy of this and other treatments and how their children have largely recovered from their autism.

However, the authors of these cliche-ridden accounts end their stories prematurely. At the end of the story, their child is no older than about 8 years old. What sort of adults and adolescents will these children grow up to be? Will they be able to have friends, romantic relationships? Will they be able to go to college? Will they be able to become doctors, lawyers, engineers, etc? We still don’t know the answer to these questions.

Similarly, even though the children that participated in the Lovaas’ studies are now in their late 30s and early 40s, Lovaas has never published any adult outcomes of his subjects. We don’t know what kind of adults they grew up to be and whether they would be considered “normal functioning” as adults.

I think of the old James Barry story of Peter Pan, the boy who never grew up. Autistics in the media are not dissimilar to Peter Pans as we rarely hear about them as adults. The autistics for whom salvation is claimed are not Peter Pans. Someday they will grow up into adults and face all of the challenges of adulthood that I discussed above which are moot while they are still children.

Though I can’t claim “normal functioning” I can claim partial recovery from my autism. At the age of 2-1/2, I was severely autistic unable to talk, throwing temper tantrums and smearing feces on walls. I obtained speech before the age of 5, I managed to attend mainstream education from age 14 and on and graduated college. I worked sporadically off and on for more than 20 years though with great difficulty. The intervention of choice for persons like myself in the late 1950s was psychoanalysis. I saw a psychoanalyst on a regular basis and my father and mother went through the refrigerator parents routine and were made to feel guilty when they were blamed for my autism. However, they were delighted by my partial recovery not knowing what the future bode for me as an adult. Psychoanalysis has now been completely discredited as a legitimate autism treatment.

In addition to my problems in the workplace, I have never had a girlfriend, have had few friends and do self-stimulatory behaviors. I have bad perceptual motor problems and inability to perform most goal-related tasks.

I can’t help being angered and embittered by all of the pollyanna stories of autistics recovering while being aware of what parents may encounter when their offspring grow up to be adults.

I wonder how the Lovaas Institute ended up on the same floor in the same building as the social security administration. Is it fate? Maybe there really is a God and either he has a sense of humor or he is trying to tell the parents of autistic children something.

The End

Copyright 2002, Jonathan Mitchell - All Rights Reserved.