A very disturbing situation for parents of autistic children occurs when they feel they are blamed for their children's developmental problems. Parents of children with emotional disturbances may even seek "alternative" therapies because they feel that conventional psychotherapists act as if the child's difficulties are all "the parents' fault". Although few therapists today would really take that viewpoint, parents may be prepared for such an attitude, because it is common to meet people who declare "I blame the parents!" for all behavioral problems. Naturally, it is distressing to seek help and then feel that an attack occurs instead.
But where does this attitude of assigning blame come from? One part of it has to do with the long discussion of the roles of nature and of nurture, and our reasonable curiosity about why certain things happen. Another may have to do with the general assumption that when something bad occurs, it's right to punish any being whose actions were part of the cause of the outcome; in the Middle Ages, and even later, there were cases where people killed a horse or dog that had accidentally harmed someone. But these items don't seem to be enough to explain the strong role of blaming in discussions of autism. Parents may be blamed, or vaccines, doctors, and pharmaceutical companies may be blamed-- but it's definitely a matter of blaming, not of calculation of responsibility.
The Drexel University historian and public health expert, Michael Yudell, discussed the historical background of blame for autism in a presentation last week at the University of Pennsylvania School of Nursing. Yudell pointed out that many people have forgotten, or indeed never knew, the ways in which research on autism has changed in its basic perspectives over the years. Reviewing these changes allows us to consider how people have thought about autism, and thus perhaps to gain a more balanced viewpoint in our present thought.
It is likely that autism has always existed among human beings, but it was not described until the 20th century, when it was considered as possibly related to "feeble-mindedness" or "childhood psychosis". In the 1930s, Leo Kanner, a well-known child psychiatrist working at Johns Hopkins, described the syndrome and argued strongly for a hereditary cause. He even published a book, "In defense of mothers", contradicting the Freudian view that experiences of early caregiving caused disturbed emotional development.
In the 1940s, however, apparently at least in part out of a desire for professional advancement, Kanner published new descriptive work that emphasized the role of the "refrigerator mother", whose denial of emotional warmth caused her baby to turn away from other human beings and become autistic. This perspective was easily popularized at a time when there was a strong behaviorist influence (stressing the role of experience as the primary cause of development) as well as a concern about the role of women; following World War II, as men came back from the army and navy, women who had been working in factories were told to step aside, go home, and take up their domestic duties. "Blaming" seems to have come into the picture at this time, as women were popularly characterized as withholding nurture and causing their children's emotional disturbance.
Kanner later recanted the "refrigerator mother" position and spent much of his life trying to move considerations of autism back to brain mechanisms. However, this was difficult when Bruno Bettelheim, an enormously popular author who supported the psychogenic, experience-caused view of autism, continued to claim scientific support for the idea that parents were at fault in this childhood disorder.
In the 1960s, two events helped to shift blame from parents. The physician Jacques May, father of two autistic children, founded the League for Emotionally Disturbed Children, which funded autism research, and wrote material that rejected the "refrigerator" hypothesis. Bernard Rimland in 1964 published the book "Infantile Autism" in which he stressed biological causes of autism. He also publicly criticized Bruno Bettelheim. At this time, however, methods for examining neurological and genetic factors were still undeveloped compared to what we have today, and efforts to establish biological causes for autism were unlikely to be successful.
In Michael Yudell's lecture, he speculated that the original "refrigerator mother" hypothesis established a view of autism research as seeking someone or something to blame for autism. If mothers were not to blame, something else must be blamed. In the 1990s, a relative dearth of autism research created a vacuum of scientific expertise and made it difficult to blame scientists or doctors for autism. But Andrew Wakefield's recently-retracted research report, claiming that vaccines caused autism, opened the door to the fashionable though unsupported vaccine theory. As Yudell put it, mother blame was inverted to scientist blame.
Blame is no substitute for genuine understanding of the causes (no doubt more than one) of autism. However gratifying it may be to point the finger, such actions do not reveal solutions that can help children and families. We can hope for and work on improved communication to replace blaming, but it may be that if we don't understand the history of this problem, we will be condemned to repeat it.