There are a number of stock phrases that appear in media reports on autism with annoying regularity, phrases like:
- autism epidemic;
- this devastating disorder;
- the fastest growing developmental disorder.
They annoy me because they express ideas about autism that are either disputed or unproven. But their constant repetition leads them to be accepted as statements of fact. There are no epidemiological studies that demonstrate the existence of an epidemic. Indeed, there are good reasons not to believe in an autism epidemic. It only appears to be growing so fast if you include all the “mildly affected” (another annoying phrase) people who would not have been diagnosed 25 years ago when autism was considered a narrow disorder rather than today’s broad syndrome.
And who is devastated by autism? Is it the parents or their autistic children? And why are they devastated? Could it be the lack of services or the exclusion clauses in their health insurance that put those services out of reach? Some of us are devastated by the time, effort and money expended on debunking myths about vaccine induced epidemics and their corollary, the efforts to counter environmental theories of causation by finding genetic causes for autism. We would prefer the money to be spent providing those services that have proven beneficial. For example
How many speech therapists could you buy with the £15 million of public money spent on the abortive anti-MMR litigation in the UK or the millions of dollars expended on the Omnibus autism proceedings in the USA? These proceedings are also on the brink of collapse unless the litigants can find three typical cases to come forward from the 4,500 at their disposal. Their prospects of success appear to be diminishing.
Californian politician Rick Rollens is a fervent advocate for the link between vaccines and autism. He is also responsible for one of the most annoying media catch-all phrases, “full syndrome autism.” He means autistic disorder. But “full syndrome autism” deliberately suggests “worst case autism.” Rollens invites us to take all the negative aspects of autism and imagine them in a single child. He goes on to suggest that the year on year increases in the autistic caseload of the California Department of Developmental Services (CDDS) represents an epidemic of this worst case autism that is devastating the lives of children.
Autism Diva sat across a table from Rick Rollens last year as Rollens accused a reputable scientist of being on the take, because that scientist had written things that tended to discount Rollens’ (dead) pet hypothesis of THE EPIDEMIC OF AUTISM. The scientist in question was not in the room and so couldn’t defend him or herself.
Whether he is wilfully ignorant and rude or just plain stupid, Rollen’s invention of full syndrome autism is now part of the language. An additional annoyance for me is that his kind of misinformation and pandering to prejudice always seem to lend itself to simplistic language that registers in the popular imagination, while rational rebuttals and refutations of this sort of nonsense appear counter-intuitive and long-winded. To paraphrase William Booth, “Why should the devil have all the best slogans?”
So imagine my delight when I came across the slogan, Full Spectrum Resistance.
I really like the idea of countering “Full Syndrome Autism” with “Full Spectrum Resistance.” I found that slogan in a brochure for Marxism 2007, A Festival of Resistance. Marxism is an annual event in London that provides a platform for left wing thinkers and activists from round the world.
In the past Marxism has featured one of my favourite neuroscientists, Steven Rose. He will not be speaking this year. But his ideas about evolution, genes and human nature have had a persuasive influence on me. One of the few benefits of long distance air travel is that it gives you time to read. On a recent round trip to New Zealand I devoured two of Rose’s books, Lifelines and The 21st Century Brain. In Lifelines he argues against the overly deterministic theories encapsulated by Dawkin’s The Selfish Gene. His answer is to place the organism at the centre and explore the complexity of life. Genes play their part but do not determine the outcome. The subtitle Life Beyond Genes is an apposite summary of the book
The 21st Century Brain is equally good at tackling the reductionist tendencies in neuroscience and reasserting the conscious self as an active agent in the world against a vision which sees,
Human agency … reduced to an alphabet soup of As, Cs, Gs and Ts in sequences patterned by the selective force of evolution. whilst consciousness becomes some sort of dimmer switch controllng the flickering lights of neuronal activity. Humans are simply somewhat more complex thermostats fashioned out of carbon chemistry. [page 297]
This book is subtitled Explaining, Mending and Manipulating the Mind, which seems to summarize the aim of a lot of autism research. Unfortunately most of it follows the reductionist trend which Rose ascribes to the fact that many of those working in the biological sciences aspire to the mathematical precision and predictability of physics. He, on te other hand. positively revels in the “fuzzy way of thinking” or more formally the “epistomological pluralism ” that he deems essential if we are to embrace the complexities of life.