Full Spectrum Resistance

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

In cases of severe autism, for example, Attwood says: “When I started in the area 30 years ago, only 50 per cent acquired speech. Today, only 15 per cent don’t acquire speech.”

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.

Jonathon has provided a consistent critique of Rollens’ use and abuse of CDDS statistics. Autism Diva has cast light on his bullying tactics.

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.

 Full Spectrum

 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.

About these ads

9 thoughts on “Full Spectrum Resistance

  1. Hi Tom,
    More like the barbarian at the gates.
    [edit] Tom’s posts have been deleted. He is the barbarian at the gates. John, if you are going to advertize your blog, use your own name.

  2. Hi Kristina
    I do believe that, in addition to the important quackbusting that is beginning to nail the vaccine myth, we have to engage with mainstream scientists and sometimes challenge the assumptions that underpin their work. We cannot expect them to automatically accept ideas like autism acceptance and neurodiversity if these are presented in opposition to science. We need the humanistic philosophy of science that people like Rose are developing and we have to apply it to the science of autism. As you say, a lot of work ahead.

  3. Whether he is wilfully ignorant and rude or just plain stupid, Rollen’s invention of full syndrome autism is now part of the language.

    Decide for yourself

    He’s probably wrong about CDDS representation of what he calls “full syndrome” autism too. The CDDS autism numbers are clearly two fold ahead of the descriptive epidemiology for the 3-5 y/o caseload cohort (which indicates that they are very likely to include PDD-NOS, but rightfully in need of services).

  4. Can I expect to see you at Marxism, then Mike? Pat Stack is giving a talk on the politics of disability this year.

  5. He’s (Rollens) wrong about “full syndrome autism” and he completely knows he’s wrong. Why he’s trying to spin this is another matter, but I can tell you that the Calif. Regional Centers have plenty of kids who are PDD, NOS and Aspies. What is it with those who make-up diagnositic terms and try to edit the DSM to fit their needs?

    I really, really like the idea of “Full Spectrum Resistance” … a lot. Thanks Mike for blogging this; I really appreciate it.

  6. Hi rocobley,
    I will not be able to attend this year. But give my regards to Pat.

    dyslexic_angeleno,
    Rollens remains personally convinced about the autism/vaccine connection and has made himself nationally known as such. I do not think he can back away from this now. He is twisting the data to fit his preconceptions.

  7. We really need to start our own campaign against disinformation. Its rough when we have juggernaut obstacles such as Autism Speaks, but we really ought to get organized and start getting the word out. Or at least a more truthful spin on the facts.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s