By Anne Dachel
How could doctors have gotten it SO WRONG FOR SO LONG? Recently I heard about a PBS Point of View program called Refrigerator Mothers, produced in 2002. The segments I found showed how autism was viewed going back to the 1950s, when cold, unaffectionate mothers were blamed for causing autism.
Most interesting was the commentary by the filmmaker, J.J. Hanley, the mother of an autistic son. She recounted that in 1996, when her son was three years old, she was also told by his doctor that she caused him to be autistic.
1996? (Definitely a doctor of the old school.) It’s important to note that 1996 wasn’t that long ago.
Four years later, in 2000, when my son was diagnosed with Asperger’s Syndrome, the doctor (one of the top pediatric developmental specialists in the area) told my husband and me that we were genetically mismatched and that’s why John had autism. I wanted to know why no one else had autism among our relatives. The doctor asked about any people in our families who acted eccentric or seemed withdrawn. He said that they were probably autistic too.
The medical establishment, which has never been alarmed over autism, has taken credit for the explosion in the numbers, trivialized its devastating effects on a child, and pretended that somehow this epidemic is the result of defective genes. It’s clear that doctors have failed to understand autism FROM THE BEGINNING.
Only recently has testimony in a U.S. Senate hearing acknowledged the obvious: Autism is increasing among our children and it’s linked to environmental toxins. The American Academy of Pediatrics and the Centers for Disease Control and Prevention don’t seem to have been informed about the experts who testified in Washington. They remain baffled about a disorder affecting one percent of our children. Neither has ever officially called autism A CRISIS.
While I can’t include a link to all of Refrigerator Mothers, (I haven’t seen the whole broadcast myself) I’ve found some interesting segments.: HERE#
David E. Simpson (film maker): “Refrigerator Mothers is a portrait of seven women who represent thousands like them who during the 1950s, 60s, and early 70s, were blamed by the medical establishment and by society at large for causing the autism in their children. It’s about the role of the expert in society and the often unequal relationship between the medical professional, the psychological professional, and the people they treat.”
J. J. Hanley (filmmaker and mother of an autistic son) speaking in 2002:
“My son Timothy, who is nine years old, has autism spectrum disorder. He was born in 1993 and by the time he was three years old, we knew there was something wrong with him.
“When I took him to our pediatrician for help, to find out what was wrong with my son, the pediatrician told me what was wrong with my son was me.
“In making this film, I want to honor this generation of women who went before me, who faced extreme isolation, who faced their child’s disorder alone, and who were shunned by their communities and who did not in the end receive the kind of support that I and my son have received, which, in essence, has saved his life.”
Here’s how POV promoted Refrigerators Mothers:
“A mid-century medical nightmare is revealed in Refrigerator Mothers. Autism is one of today's fastest growing disorders, affecting 1 in 500 . A mid-century medical nightmare is revealed in Refrigerator Mothers. It is now known to be a neurological condition, but from the 1950s through the 1970s the medical establishment mistakenly believed it had found the root cause of the disorder: poor mothering. Doctors presumed that the often obsessive behaviors of autistic children — rigid rituals, speech difficulty, self-isolation — stemmed from their mothers' emotional frigidity. Refrigerator Mothers explores the traumatic legacy of blame, guilt and self-doubt suffered by a generation of women who were branded ‘refrigerator mothers.’"
And I discovered that there was even a racist element to the diagnosis of autism in the past:
Whites only: Racism and Autism. REFRIGERATOR MOTHERS
Black mother Dorothy Groomer: "I asked …if Steven had autism and it was more than one doctor. At that time it was a team of them over at the University of Illinois. And they said, no. It may be an emotional disturbance, but it was not autism. We did not fit the mold. We did not fit the classic mold for autism—which is white, upper middle class, and very, very bright.”
POV then showed us an old black and white film featuring autistic children:
“Jimmy (shown rocking back and forth) is an autistic child, 11 years old. His father is a specialist in nuclear power plants.
“Joseph is 7 years old. Both of his parents are college graduates. His father is a college professor.”
Dorothy Groomer continued: “It was really not a negotiable issue. According to my doctors, my son could not be autistic. I was not white and it was assumed that I was not educated. Therefore, he was labeled emotionally disturbed. Here your child has a disability that you recognize and they said no, you can't be that. You can't even be a refrigerator mother. The irony of it all."
POV told us that as far as doctors were concerned, “The general knowledge out there was that mothers were responsible for making their children autistic.”
After viewing these parts, all I can say is that I’m sick and tired of doctors never being right about autism. We’ve suffered through decades of false claims. Autism isn’t a puzzling curiosity they can guess at. It’s human suffering on an unbelievable scale. They told us that emotionally cold mothers made their children autistic. This was followed by endless theories on the possible cause: older fathers, older mothers, autism genes, and TV watching.
Doctors should be embarrassed about their record with autism. It’s on a parallel with TV commercials showing us a busy doctor and announcing that more doctors smoke Camels than any other cigarette.
Anne Dachel is Media Editor of Age of Autism.