My Letter to The Times
About 10 or so years ago, the New York Times published an article about siblings of autistic children. Lacking in the article was the perspective of someone my age – one who grew up in the 1950s. I was fortunate in having my letter to the editor published.
Below is the essence of that letter, expanded beyond the 150-word limit:
Those growing up today may not know that as early as the late 1940s, the fact that a child was autistic was blamed on the parents, particularly the mother. So in addition to the feelings of anger, loneliness and frustration I experienced having an autistic brother, my parents had the added burden of guilt: not the every-day guilt that one would naturally feel but guilt imposed upon them by the scientific wisdom and the popular press of the time. The term “refrigerator mother” was coined to identify the one responsible for the “emotionally cold” environment that was the alleged cause of the child’s autistic behavior.
Thank goodness this is no longer the way of thinking.
My parents were wise enough to recognize the potential consequences of a severely brain-damaged child on my younger brother and me, and were able to help us. Even so, the road to acceptance is a long one and the prevailing feeling that I have now, at age [60], have toward my older brother is one of love. Michael has taught me a lot, even though he has never spoken and has never seemed to acknowledge me.
Very Brief History of the Term ‘Refrigerator Mother’
Leo Kanner was the first to describe autism in his 1943 paper[1]. This accomplishment opened the door to a different way of looking at a person affected by this disorder. No longer did they have to be squeezed into a category where they didn’t fit. Gerald D. Fischbach, in his review of Kanner’s 1943 paper stated:
“Kanner described a distinct syndrome instead of previous depictions of such children as feeble-minded, retarded, moronic, idiotic or schizoid. In the words of his contemporary Erwin Schrödinger, Kanner “thought what nobody has yet thought, about that which everybody sees.”[2] ”
With Kanner begins the study of autism as an entity. But whatever relief he provided to parents by naming the affliction of their children was neutralized in his 1949 paper[3] where he attributed the syndrome to a “genuine lack of maternal warmth”. When questioned about the fact that there are some families with both autistic and non-autistic children, Kanner said that this was due to the fact that the mothers just happen “to defrost enough to produce a child”.[4][5]
Bernard Rimland, founder of the Autism Research Institute, in his book Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior, (1964), questioned the premise that behavior of the parents was responsible for the autism of their child. It is heartening to know that Dr. Kanner helped to provide support for this view by writing the forward to Rimland’s seminal work. By doing this, he seemed to abandon the “refrigerator mother” etiology of autism and gave credibility to the thinking that autism has a biological basis. Pushback however came from Bruno Bettleheim, a psychologist, very popular in the 1950s and 1960s, who wrote The Empty Fortress: Infantile Autism and the Birth of the Self (1967). He attributed autism to neglect of emotional needs, comparing the autistic child’s world to the environment of Nazi concentration camps, with the parents as the guards.[6]
There is so much more to the story, but it is good to know that in today’s environment, there is much support for parents and siblings of autistic children and evidence for a biological basis of autism.
There is enough guilt to go around.
[1] (Kanner L. Autistic disturbances of affective contact. Nervous Child 2, 217-250 (1943))
[2] http://sfari.org/news-and-opinion/classic-paper-reviews/2007/leo-kanners-1943-paper-on-autism-commentary-by-gerald-fischbach
[3] Kanner L (1949). “Problems of nosology and psychodynamics in early childhood autism”. Am J Orthopsychiatry 19 (3): 416–26.
[4] “The child is father”, TIME (1960-07-25).
[5] As an aside, Kanner’s 1949 paper refers to problems of ‘nosology’. Nosology is the study of classification of diseases. In a previous post, I referred to the power of labels. Labels are helpful in negotiating the terrain of everyday life. A proper label will enable one to find fruit cocktail in a can labeled ‘fruit cocktail’, to avoid a suspiciously-acting character, and so on. Mislabeling can be harmful. For instance, a child who thinks a skull and crossbones label on a bottle under the sink means ‘pirate food’ is in real trouble. Labels are just as important in science. An oncologist treating one type of cancer with protocols for a different type; a person treated for one mental illness, while actually having a different one can be thought of as examples of failures of a classification system.
[6] http://ezinearticles.com/?Bettelheims-Theories-on-Autism-Under-Scrutiny&id=1451564
Life is big. We learn to fence it. And cross fence it. Everything in its own pasture and its own corral. And its own stall. A compartment for everything else. For some, the walls of the boxes are very thin. And for some, not at all. Thus it is overwhelming to stand out in the storm of phenomena, while everybody else has an inside to go. Everybody else can feel this happening, too. But it is not their fault. — The Healing Garden gardener
Thank you.
J