Autism was named by a Swiss psychiatrist, Eugen Bleuler, when he was looking at symptoms of schizophrenia in 1910. In 1938, Austrian psychiatrist Hans Asperger adopted the term in his study of child psychology. His work eventually led to a separate definition of Asperger syndrome.
It was Leo Kanner, a doctor at Johns Hopkins Hospital, who published a paper in 1943, “Autistic Disturbances of Affective Contact,” that solidified our modern definition, after his study of 11 children characterized by “aloneness” and “insistence on sameness.”
But that paper and a subsequent 1949 paper laid the blame at the feet of mothers with a “genuine lack of maternal warmth.”
This led psychiatrists to blame the mother for a child’s autism, in a syndrome called “refrigerator mother,” a term coined in the 1950s. Cold, unfeeling mothers, unresponsive to their children, were supposedly causing children to turn away from social contact.
Fathers didn’t escape either. They were blamed for not playing with their children. Both parents were blamed for attending to material needs only, not warm, social interaction.
That is, if babies were having trouble relating to others, it was because their mothers and fathers were cold and indifferent to the babies. As late as 1960, in an interview, Kanner said that parents of autistic children were “just happening to defrost enough to produce a child.”
Kanner was joined in this opinion by University of Chicago professor Bruno Bettelheim, who said autism was caused by mothers who were cold and distant, so infants could not “bond properly.”
To be fair, Kanner said it wasn’t only the parents, “The children’s aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relations with our patients.”
But, Bettelheim likened it to his experience in the concentration camp at Dachau, “The difference between the plight of prisoners in a concentration camp and the conditions which lead to autism and schizophrenia in children is, of course, that the child has never had a previous chance to develop much of a personality.”
This is what I thought in the 1960s, because that is the myth psychiatrists were promoting.
The psychiatric profession didn’t change until one of their own, research psychologist Bernard Rimland, wrote a book in 1964 challenging professional wisdom because of his experiences with his own autistic son, “Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior.” Kanner wrote an introduction.
I didn’t change until I met a mother first and her son only much later, and came to realize something the psychology establishment eventually did as well, that autism had to be independent of the way mothers were treating their babies.
In the late 1970s, I had a friend at work who, though she normally didn’t talk about such personal things, eventually allowed me to know something about her life.
She was a software engineer, as I was. The profession, in general, is noted for the poor social skills of its practitioners. It was a low bar to be considered socially adept as a software engineer, necessary to advance in management, but not required to be a good software engineer.
But, this woman was warm and friendly.
The first thing I heard about her personal life was in a casual conversation about pacemakers. Her husband had been 19 when, walking past the George Washington University hospital in Washington, DC, he collapsed on the sidewalk.
His doctor subsequently wrote up in medical journals his experience in implanting a heart pacemaker in the youngest patient ever. Had he not collapsed in front of a hospital, he wouldn’t have made it.
Skip ahead 10 years or so. My friend and her husband were both working and had children by now.
She told the story as though it were about someone else. Her husband had been awake during an operation to install a second pacemaker because the doctor needed to ask him questions during surgery.
At one point, my friend’s husband said to the surgeon, “My pacemaker has stopped.” He meant the first one, not the one they were in the process of installing. The doctor looked at the monitor and saw that his patient’s heart was still beating.
“Don’t be silly. Everything’s fine.”
“I’m telling you. I can tell. It has stopped.”
All of a sudden, the monitor reflected what his patient had been telling him.
“Oh, s***. Gordon, shut up. Nurse, put him under.”
He woke up with two pacemakers successfully installed and made medical history for a second time.
But, that was not why my friend told me the story. She told me as context for hers and her husband’s planning to make sure their son, who was autistic, would be cared for if anything happened to his parents while he still needed them.
She explained that they had ignored the advice they got early on that there was nothing you could do to help an autistic child. She and her husband had spent hours working with him to teach him language and social skills.
Of course, they did not know what would have happened had they not done this. It just felt right to them. As far as they could tell, their son just needed extra help. It wouldn’t have mattered if it had been a mental disability or a learning disability. They just knew he needed extra help and they provided it.
Only several years later were they told that their instincts were exactly right.
Today, that is the recommendation for children diagnosed with autism, for which there is no cure. The program is called Early intensive behavioral intervention (EIBI).
It was developed by a psychology professor, Dr. Ivar Lovass at the University of California at Los Angeles (UCLA) and is named for him. It uses the principles of Applied behavior analysis, known formerly as behavior modification, now as ABA.
College students who took Psychology 101 may remember the behavior modification techniques of B. F. Skinner, a scientist who taught rats to run a maze in the 1930s with a combination of shocks and rewards. ABA now focuses on positive rewards of socially interactive behavior, modeling and providing alternatives to socially-isolating behavior.
Parents usually start to notice the signs of autism in their children about the age of two. It occurs in boys four to five times more often than girls. Research claims that with up to 40 hours of therapy for from two to six years, starting at three, nearly half of autistic children can be mainstreamed into regular classrooms.
Autism Speaks, the patient and parent advocacy group, is hosting their Seventh Annual Celebrity Chef Autism Awareness Gala on October 21, 2013 in New York City.
No more refrigerator Moms.
Carol Covin, Granny-Guru