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Autism: We've come a long way (or have we?)

From TODAYshow.com contributor and "Ask Kitty" columnist, Kitty Schindler -- It’s hard to believe that the debate about autism goes all the way back to 1943, when Leo Kanner of Johns Hopkins, a pioneer in child psychology, first observed a group of 11 youngsters whose parents had brought them to him for diagnoses. Kanner coined the term “infantile autism” at that time.

It was 27 years later that I first became acquainted with the writings of child psychologist Bruno Bettelheim. Bettelheim thought autism was caused by a mother's rejection of her infant; he believed the infant was socially withdrawn due to having been deprived of affection and a stimulating environment. Such mothers were referred to as “refrigerator moms.”

A few years later, when I was continuing my nursing education in a graduate program in special education, I had the opportunity to see Bettelheim lecture in person. He was expounding his theory on autism when several women in the audience raised their hands. When he acknowledged them, they began reading opinions by other professionals that contradicted his. Bettelheim became irate and refused to continue speaking until, to my shock, the women were escorted from the room.

Bettelheim’s “refrigerator mom” theory caused a lot of guilt and suffering among parents of autistic children before being largely discredited. Bettelheim himself committed suicide in 1990, after which his reputation declined as reports emerged that he had falsified some of his credentials and mistreated patients.

We have come a long way since those days, but the search for a definite cause of autism goes on. Research is being continued by such organizations as the Centers for Disease Control (CDC) and many local, national, international and private organizations. The most significant progress is being made in the areas of early diagnosis, intervention and education.

And I have seen that progress firsthand. In the 1970s I worked as a substitute teacher and volunteer in both public schools and private institutions for disabled students up 18 years old. In 1980, I began work as a nurse in a New York City public school for profoundly mentally challenged and physically disabled students. Here I observed a 9-year-old boy who was living in a group home and was assigned to an age-appropriate class. Let’s call him Boy A.

A very handsome child with no apparent physical disability, Boy A was nonverbal, self-stimulating, and self-abusive. He had not been diagnosed as falling within the autistic spectrum and not been placed in an autistic intervention program. To control his self-abusive behavior, his hands were tied with strips of cloth.

Contrast that treatment to today, when just recently I spoke with a relative about her 6-year-old son, whom I’ll call Boy B. He was diagnosed with autistic spectrum by age 2 and has been enrolled in a year-round autism intervention program ever since. Over the intervening four years he has shown continual improvement in social, emotional and physical abilities. He is affectionate and funny, swims, enjoys games and loves amusement parks.

Boy B has received all the resources available to children in the autistic spectrum. His school program is reinforced by his devoted parents and older sisters, who are dedicated to his progress. They also follow the current diet suggestions for autistic children. Although his speech is slowly improving, it is the area of weakest progress. It seems there are never enough speech therapists.

There has been tremendous progress in treating autism in the 30 years between Boy A and Boy B, but its cause remains a mystery – and an increasingly contentious one. A recent PBS documentary, “The Vaccine War,” spotlighted the controversy over whether the growing number of childhood vaccinations is at fault for the skyrocketing numbers of children being diagnosed as autistic spectrum since the 1980s. And Dr. Andrew Wakefield, who suggested a possible link between the MMR (measles, mumps and rubella) vaccine and autism, vowed on TODAY to keep fighting for his theory despite having his medical license revoked.

Even mothers of normal children are becoming afraid of vaccines; I have spoken with many such moms, and they do fear MMR most. And that is troubling, because many moms younger than my 86 years haven’t been around long enough to remember the havoc those diseases can cause – particularly the danger of rubella to pregnant mothers.

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