Mar 2, 2016

Diary 2016 (March 3rd)- Notes on recent reading: Neurotribes

One step forward, half a step backwards. That’s the tortuous history of understanding autism, which Steve Silberman attempts to chart in Neurotribes.

The photograph on the left shows an autistic girl being shocked, whenever she drifts and doesn’t follow instructions. The strips on the floor are metallic and two electrodes have been placed on her back. It is taken from a 1965 photo-essay in Life magazine, titled Screams, slaps and love, about research in Applied Behavior Analysis (ABA), conducted by Ole Ivar Lovaas at UCLA. Other innovative techniques for discouraging ‘garbage behavior’ included food and water deprivation, subjecting them to very loud sounds and striking them. Lovaas stressed on science over sentimentalism. His objective was to eliminate self-injury, self-stimulation and echolalia, so that the autistic children would no longer be isolated or trouble and embarrass their parents. ABA continues to be used today, as a means of teaching children on the autistic spectrum basic day-to-day routines and simple ways of expression. But the aversives favored by Lovaas have been almost entirely replaced by positive reinforcement.

Lovaas played a crucial role in refuting the psychoanalytical ‘refrigerator mother’ theories in vogue since the late 40s, which blamed the coldness of the parents, especially the mother, for autism in children. Bruno Bettelheim, one of the primary proponents of the theory, claimed that the children would be best served by parentectomy (separation from parents)and being placed in suitable institutions. Lovaas also challenged the existing wisdom that autistic children could not learn, though his definition of learning was severely restricted. But he decided on focus on aversive incentives and ‘curing’ autism.

Another major character, Bernard Rimland helped stop the parent-blaming with his book and built up one of the first parent networks, getting much-needed support and information to them. But in the later phase of his career, he began to tout the benefits of unproven alternative medicines, such as vitamin treatments and blamed vaccines for causing autism.

Among the major scientific and medical establishment figures, Silberman preserves most of his praise for Hans Asperger. He studied over 200 children, with symptoms which would place them on the autism spectrum, in Vienna during the 1930s and early 40s. His clinic was destroyed by bombing during World War 2 and most of his work lost. It was rediscovered only during the 1980s. Asperger appears to have recognized a wide variety of underlying conditions, ranging from genius to barely functioning, which could be grouped together under autism. He also wrote about the positives and negatives arising from the same source and the importance of enabling the children to cope with their challenges through special strategies.

Almost simultaneously, Leo Kanner published his account of autism in the US, which set the standard for autism definitions for the next 35–40 years. Earlier, there was no word for what those children were going through. Now, there was one. But Silberman criticizes Kanner’s definition as being too monolithic (articles on the web say the dichotomy between Kanner and Silberman was not as obvious as Silberman says) and narrow, in terms of behavioral and age of onset criteria. The term used was Early infantile autism, limiting it to an affliction of the early childhood. In fact, the autism in adults continued to be called ‘residual autism’ till the 80s, implying that autism could somehow be cured or it would vanish by adulthood. To further confuse things, autism was enfolded into a vague, all-encompassing category of childhood schizophrenia.

A similar inevitable but mixed advance was the expansion of the definition of autism in DSM III-R (DSM stands for Diagnostic and Statistical Manual of Mental Disorders) in 1987, based on the work of British psychiatrist, Lorna Wing, led to a massive spike in the diagnoses of autism. A new category of sub-threshold autism was added for individuals who did not satisfy all the criteria (PDD-NOS).

Wing’s intention was noble, to expand the access to families of support services. But its inadvertent effect was a public panic, paranoid media reports of an epidemic. Autism was blamed on all sorts of environmental factors without any basis in research. The nadir was the anti-vaccine movement, which continues to do incalculable harm.

While their actions must be criticized in no uncertain terms, it would help to understand the motivations of parents choosing not to get their children vaccinated or subjecting their autistic children to severely restrictive diets, humongous doses of dubious supplements and potentially deadly treatments such as chelation. When they see their child regressing, when he/she refuses to talk, to respond, acts out, they feel like their child has been stolen and replaced by an alien. They demand explanations, ‘hunting for elusive threads of causation in a dense web of correlations’. They need someone or something to blame. Mainstream medicine doesn’t offer any reassurances or any firm, clear course of action. The alternative biomed community offers ‘dozens of next steps you could take.’ It is understandable if parents feel that not exploring those options would be admitting defeat, not doing everything you could for your child.

Silberman concludes with the Neurodiversity movement, which has taken root within the autistic community during the last decade or so. The advocates propose to view autism as ‘a valuable part of humanity’s genetic legacy while ameliorating the aspects of autism that can be profoundly disabling without adequate forms of support’, instead of treating it as a disease to be cured. It has parallels with the feminist and gay rights movements and also with the deaf culture (which can veer over into dogma at times). It appears to be the best and most humane path forward in the current scenario, where we are very far from understanding autism.

A bit of browsing reveals that Neurodiversity has led to a fissure in the autism-advocacy community. Between some parents of autistic children and high-functioning autistic adults themselves. Here are three examples:

The sometimes rancorous debate is about lobbying, funding and the direction of activism. Should the limited resources be devoted to finding a cure, or should they focus on improving and securing services required by autistic adults to function in the world.

On one hand, till now the search for a cure does not seem to have thrown up anything substantial. Funds have been wasted fighting the anti-vaxxers. Quack biomed companies have thrived, taking advantage of parents’ desperation. No ‘cure’ seems to be on the horizon. We are barely able to define autism.

On the other hand, parents say that low-functioning, non-verbal, self-injurious, aggressive autistic children need a cure. They blame Hollywood and media for creating a romanticized ideal of the idiot savant. I am not sure whether they are seeking a cure for autism or only its more egregious effects. I do not think there is anything wrong with the latter, though neurodiversity supporters say behavior modification in order to be socially acceptable should be minimized. Their strengths and ‘weaknesses’ are considered to be part of a harmonious whole. You cannot just excise the negatives out. Which might well be true for people with Asperger’s.

The other problem is the blurred line between the different categories. Those boundaries are heavily smudged within the spectrum and on its edges. Silberman himself, who is firmly on the side of neurodiversity, mentions that the high and low functioning are not fixed labels. They can change through life and also from day to day. Also, a spectrum makes it sound like everyone can be placed on a precise point. But it seems no two autistic individuals exhibit the exact same behaviors.

Silberman has his biases. He has the irritating tendency of identifying potential Asperger’s candidates from history. There’s an entertaining but weird digression in the form of a chapter on radio communities, the birth of science-fiction and its fandom and virtual social networks. He implies that many of the pioneers might have been on the spectrum. But his research is broad and nuanced enough to provide a good introduction to autism for a layperson.