A good friend, Keith Marcum, just wrote the following essay/letter to somebody at Brown University and someone else at the NIMH. He’ll be putting together a more technical version of it seeking publication in a professional journal, but the letter below is entirely readable and relevant to today’s frequently hysterical and all too often pre-analytical world. By the way, the 8-year-old who is mentioned stayed in my home for a little over two years. Yes, life can contain real, “true” meaning—at least once in a while—for anyone who looks for it. Keith’s background includes cognitive/behavioral psychology and neuro-anatomy.
The Epidemic of Autism is a myth created by circumstances that must be addressed realistically. I dismiss the C.D.C.’s notion that these factors have already been taken into account when examining the current epidemic. Although neurological anomalies seem to be on the rise, the disorder known as autism is not.
In the 1960s, no major reports could be found on television, radio, or in the news media regarding autism. Most doctors and teachers knew nothing about the subject. Even in the New York metropolitan area, no more than a dozen doctors knew much about autism, including pediatricians. They barely knew who to refer families to for workup and diagnosis.
A diagnosis of autism came from experts, usually psychiatrists. In the ’60s, ’70s and into the ’80s, the diagnosis of autism was the kiss of death. Many people with autism went undiagnosed and were hidden away, removed from public view. During my career throughout those decades, I saw many people who would today be labeled autistic but who were then labeled mentally retarded.
Forty years ago a child had to demonstrate most if not all of the symptoms to a level that was seriously disabling in achieving normal daily functioning in order to be labeled as autistic. In most cases, other diagnoses were employed instead.
We must remember our own history here. The condition of autism was considered to be the result of parental behaviors akin to abuse. We cannot ignore the notion at the time that “Refrigerator Moms” were causing their children to become autistic. Bruno Bettelheim misinformed the world about autism. Many psychiatrists were convinced that children with autism actually suffered from childhood schizophrenia and voluntary mutism. Let us not forget about Dibs, In Search of Self and other similar books.
After the release of the films “Rain Man,” “What’s Eating Gilbert Grape,” and the TV series “St. Elsewhere” with a supposedly autistic boy in the story line, the diagnosis of autism exploded. It was no longer an evil. World opinion began to change.
Popular media such as magazines, TV, newspapers and the Internet are now reporting about autism on a daily basis. Public awareness has grown to a level of hysteria and panic. Celebrities have spoken out on TV and to popular magazines with full spreads on their “autistic” children. The Internet is abuzz with parent support groups convincing other parents that if they want good services to get their child labeled “autistic.” Parents are now far more aware than they once were. They’re well informed, self-empowered and can utilize such tools as the Internet to inform one another about how to get an autism diagnosis and an increase of services and treatments for their children.
Services are now available that previously did not exist. Parents realize that an autism diagnosis allows access to these services, such as a small classroom, and one-on-one teaching assistance. I recently had a conversation with a boy and mother who had decided that he had autism because he got A’s in all subjects except English where he got a D, so it just had to be a cognition and language deficit, and thus “autism.” They were hunting for a professional so he could get one-on-one tutoring.
Diagnostic irresponsibility can tend to reverberate unpredictably and in unfortunate ways. About three years ago, I came across an 8-year-old child with a false diagnosis of autism. Sure, he displayed hand flapping at times, severe hyperactivity and difficulty forming lasting relationships, but he was not by any stretch of the imagination actually autistic. Out of desperation, the child’s mother had somehow managed to convince local diagnostic professionals otherwise several years prior to my entering the picture. Due to his autism diagnosis, extra services such as one-to-one teaching assistants and tutoring were in place, yet he was still failing desperately. As a result of his disruptive nature, his teachers refused even to allow him to participate in their classrooms, and at age eight, he was virtually uneducated and unsocialized. His mother found out-of-home residential placement, as she felt she had no choice. The primary problem for this child was that he’d been misdiagnosed. Once teachers and therapists became aware of what his actual nature was like, they approached him much more productively. After two years, the improvement was dramatic and he was reunited with his mother.
Let me reiterate what I said in the beginning. Medical awareness, knowledge, acceptance and willingness to use the term “autism” has gone through nothing short of a revolution.
The childhood mental health treatment industry has increased in size in the past three decades by an extraordinary amount. A staggering number of professionals now have credentials that did not even exist forty years ago. There simply are far more trained people everywhere. Today most mental health professionals consider themselves sufficiently knowledgeable about autism to make at least a tentative diagnosis without hesitation.
We have broadened the diagnostic criteria limits of the definition of autism and by doing so have committed an error of inclusion. With less stringent adherence to very narrow criteria, the diagnostic net is including many children who were previously undiagnosed. Once, a person had to have all the symptoms to a level of severity that would profoundly impact daily functioning. Today the “spectrum” covers anyone who is different, peculiar or has unusual behaviors. The inclusion of Asperger’s syndrome within the spectrum was a decision based more upon popular opinion than on clinical judgment.
Generalized developmental delays occur in many people but every time we see a developmental delay it is not necessarily autism. I liked Bryna Seigel’s term of Pervasive Developmental Disorder. It is a more accurate and useful diagnosis than the misused term “autistic.”
The ratio of the diagnosis of mental retardation to that of autism has not, in my opinion, remained the same. If the rate of the diagnosis of mental retardation had kept pace with the rate of the diagnosis of autism, then one in every fifty children would be labeled abnormal. The number of children labeled as mentally retarded has clearly dropped in relation to the number of children labeled as autistic. The term “mental retardation” has now become the “bad” label.
Autism can’t be an epidemic because it is not a disease. We will never cure autism. The reason for this is that autism is nothing but a syndrome, a collection of symptoms—nothing more. There is no disease called autism.
There is a very serious increase in brain disorders; what many wise specialists call global developmental disorders. But these are a variety of brain diseases caused by several different pathological conditions with vastly dissimilar treatments and prognoses. To label them all as “autism” does a great disservice to the parents of and children with autism.
We may someday look back at the hysteria of the “epidemic of autism” with much shame. Only a calm approach to providing a differential diagnosis to each of these diseases will help solve this dilemma. Using all the variant types of PET/CT, fMRI, SPECT, ELISA and the many diagnostic tools we now have available, we will identify what each of these separate and distinct diseases are and how best to treat them. We should work together to diagnose and name these neuro-developmental disorders in an appropriate manner in the near future.