Leo Kanner described autism in 1943
(Author: M. O’Callaghan)
What causes autism, the neuropsychiatric disorder that manifests itself in social and communication difficulties? It depends who you ask, and in some instances, when you ask. This week, New York based charity, Autism Speaks, announced the publication in the journal, Paediatrics, of research that suggests, more strongly than ever, the genetic basis for the condition. According to the study, conducted by University of California – Davis, children who have one or more older sibling with an autistic spectrum disorder (ASD) are much more likely than previously thought to be diagnosed themselves with an ASD than those who do not. A month or so ago, the same charity was hailing a breakthrough a study, conducted at Stanford University, purporting to show that autism is triggered by environmental factors.
Debate over the aetiology of this condition has raged since it was first recognised in the 1940s. The dominant hypothesis that persisted until the mid 60′s was that of the “refrigerator mother.” Espoused by Bruno Bettelheim, the idea came from Leo Kanner, who was first in describing autism, separating it from mental retardation and childhood schizophrenia. In 1949, he wrote that autism is caused by “genuine lack of maternal warmth.” Bettelheim, Kanner and proponents of “refrigerator mother” nonsense failed, in their hypothesis, to account for the fact that many of the children they studied had non-autistic siblings. In truth, their chain of causality was rather awry. They observed that mothers of the autistic subjects did not interact with their children with gregarious, physical affection. This made the child retreat into “autistic aloneness.” However, one of the first signals that may indicate to a parent or professional that a child is likely to have autism is that the infant cannot bear to be held. Being the case, naturally, a mother, not wishing to cause her child anxiety or suffering restrains her physical demonstrations of love. Kanner described some parents as “cold, bookish … detached and highly – even excessively – rational and objective.” Obviously, he didn’t realise it, but these observations are the first hints of a genetic basis for autism. He may have even been describing individuals who, these days, might be diagnosed with Asperger’s syndrome, a high functioning ASD. At the very least, these parents displayed the broader autistic phenotype (BAP).
Work carried out by psychologist and father to an autistic child, Bernard Rimland, all but destroyed Kanner’s causation theory. In one last ditch attempt to rescue the hypothesis he’d built his reputation and career on, Bettelheim penned the book, The Empty Fortress. In it, he likens autistic children to inmates of a concentration camp with their parents as the guards. Sadly, for some children abandonment of the “refrigerator mother” idea came too late. A “therapy” based on the notion that autistic children could be “thawed” came into being and has never entirely gone away. Holding/attachment therapy, as the name suggests, has children held very tightly by parents or therapists, restraining them however hard they struggle. There have been numerous cases of holder and holdee being badly injured during therapy. Worse, children have died of suffocation. Advocates for Children in Therapy holds the tragic details of recent cases.
The next big controversy came when autism was fallaciously linked to vaccines. First the combined measles, mumps and rubella vaccine (MMR) was the culprit, along with vaccines with mercury containing preservative thimerosal in their ingredient list. Despite the fact that the MMR link was shown to be fraudulent and thimerosal has been removed from all but a very few vaccines, the debate thunders on. In my article on the new measles outbreak, there is much more detail about the effects of the anti-vaccination movement on public health and the perception of individuals with autism. No one, however, has, I believe, described the pernicious influence of the anti-vaccination movement better than Kathryn Bjornstad of Illinois. She is autistic and her frustration with the anti-vaccination agenda spilled out on the Jenny McCarthy Body Count Facebook page. She fiercely objects to the use of autism, her condition, by McCarthy and the like to “frighten people out of their health and into buying [their] craptastic books.” More damning yet, she asserts, the movement has “made the world a worse place to be autistic.”
Another recent twist to the “what causes autism?” debate came not from a disgraced doctor, not from anti-vaccination propagandists or alternative medicine practitioners with supplements to sell but from the high priestess of neuroscience herself, Baroness Susan Greenfield. Her insinuations that Internet use may be linked to the increased incidence of ASDs naturally sparked controversy. They also sparked an eloquent repost from Oxford colleague, professor of developmental neuropsychology, Dorothy Bishop. Her open letter to the Baroness, whose particular field of expertise is neurodegenerative disease, begins gently enough and progresses into a scathing and brilliant critique of Greenfield’s abuse of her public profile in pontificating on matters of which she is not expert. Bishop bemoans the fact that “in recent years your speculations have wandered onto my turf and it’s starting to get irritating.” Her assertions, says Bishop, are “illogical garbage.” In response, Greenfield has claimed her comments have been misrepresented, going on to contradict herself almost instantly that, “I point to the increase in autism and I point to internet use. That’s all.” The number of people diagnosed with an ASD began to rise in the 1990s. I point to the increase in autism and I point to the Teletubbies.
The proliferation of studies seeking the cause of autism leads to inevitable confusion. Good studies and plausible hypotheses often receive far less attention than the more “out there” notions. Often the most grounded ideas can be the ones most difficult to explain to non-scientists, such as the role of genes in the condition. What makes the Davis sibling study so compelling is its methodology. The subjects, second, third, even fourth of children within families with a child already diagnosed with an ASD were followed beyond their own diagnosis. Their subsequent younger siblings were also included in the data. However, when very powerful charities like Autism Speaks and the National Autistic Society fund research into hypotheses that have been systematically debunked, they help keep the old debates alive and derprive funding from people who could really add to the understanding of this fascinating condition and services that could improve the quality of life for all those touched by autism.