Action For Autism

Supporting Autistic People

Autism’s damaging delusion

The latest issue of Communication, the members magazine of the National Autistic Society contains a two page article by Dr. Mike Fitzpatrick, an edited excerpt from his forthcoming book, Defeating autism, a damaging delusion, which is due out in October. Dr Fitzpatrick’s son was diagnosed with autism in 1994. His earlier book, MMR and Autism, was a vigorous defence of the vaccine combined with a thorough reply to Andrew Wakefield and a sustained rebuke of the medical establishment whose own ham-fisted response enabled Wakefield and his supporters to dominate the media coverage.

The resulting drop in vaccination rates has allowed measles to become endemic in the United Kingdom once more. Meanwhile autism prevalence has continued to increase to the point were the NAS estimate of a prevalence rate of 1 in 112, which attracted so much criticism in the 1990s when it was first suggested, is now increasingly supported by data from epidemiological studies in the UK.

In MMR and Autism Dr Fitzpatrick briefly discusses what he calls “Alternative Autism,” (chapter 6 pp 77 -100) which roughly equates to the biomedical movement. In his latest book this alternative autism takes centre stage. I detected at least four themes in the excerpt in Comunication.

  1. These alternative therapies do not work.
  2. The science behind them is flawed.
  3. Some of these treatments are potentially dangerous.
  4. The real damage is in the way that the quest to “defeat autism” demonizes autism, and by extension, people with autism are similarly demonized.

I do not think that Dr Fitzpatrick is a recruit to the ranks of Neurodiversity just yet. But in the absence of the science based medical interventions to which he aspires, he is clear that

The most damaging aspect of the crusade to ‘defeat autism’ is the attitude it expresses towards children with autism, indeed towards people with autism more broadly. Parents who share the unorthodox biomedical outlook sometimes project a negative view of autism as a destructive disease process. They can portray their children as being ill, listing their physical symptoms in the most graphic terms to illustrate the extent of their disease and disability. Parents often describe their own predicament in terms of grief and loss and as one of unremitting  battle against the corrosive impact of autism on their child, their marriage and their wider family. This implicitly disparages and dehumanizes people with autism. It is not surprising that such a negative attitude towards autism is sometimes expressed in a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease. (Communication:Autumn 2008 p15)

I fully expect a number of parents to be outraged by this. They will take it to mean that Dr Fitzpatrick is suggesting they do not love their children. I take it to mean that, for some parents who adopt the unorthodox biomedical outlook, their love will be measured by the lengths they are willing to go to in order to provide these biomedical treatments. I have seen this expressed as “Love the child. Hate the autism.” And your love for your child is often presented as a function of how much you are willing to sacrifice in order to express your hate for autism.

Dr Fitzpatrick offers a more positive alternative.

My aim is to encourage parents to emphasise the positive in relation to their autistic children, to pursue interventions for which there is good evidence of benefit (and some guarantee of safety) and to avoid the diversions and dead ends offered by the perspective of ‘defeating autism.’ (Communication:Autumn 2008 p15)

This reminds me of another article in Communication by Rita Jordan last winter which argues for a distinction between autistic spectrum disorder and autistic spectrum condition. Professor Jordan’s argument is that if we use the term autistic spectrum for both the condition and the disorder, in the first case we should be arguing for accommodations to take account of a recognised difference, while in the second case we have a disorder that requires interventions. In reality most people on the autistic spectrum  probably require both accommodations and interventions. The balance will doubtless change during their lifespan. Professor Jordan asks

“So what would this mean for diagnosis? It would still be important to diagnose the disordered group and this could still be a medical category, but based not on differences from the norm (typical) but on the basis of disruption of development and functioning. Those who just have a different processing style would still need a way of having this identified to enable autism-friendly environments and approaches and to put them (and their parents) in touch with similar others. But this need not be a medical ‘diagnosis’ but a psychological assessment. Both groups need to have their common humanity respected and so, even with the best intentions, we should avoid characterising non-typical functioning children as ‘non-human.’

‘Defeating autism’ would then seem absurd: no-one would want to reduce the diversity of human nature and so deny the contribution of so many unique individuals.”  (Communication: Winter 2007 p12)

Dr Fitzpatrick and Professor Jordan are tackling this question from different perspectives and their positions are quite different. But in contrast to the “unorthodox biomedical outlook” I can find common ground with both their positions and can envisage a time when we all three might be in broad agreement. I see no such prospect with proponents of the “unorthodox biomedical outlook.”

That seems the most important point to me. Some of us want to know and others think they know already. I would like to think that Dr Fitzpatrick, Professor Jordan and myself are all open to persuasion. And part of that openness has to include the possibility that we are wrong and the biomedders are right. I see little evidence to suggest a similar attitude in the biomed camp.

August 29th, 2008 Posted by Mike | Communication, DAN!, Uncategorized, biomedical interventions, science | 15 comments

Communication, Respect and Autism

 Thoughtful Debate

The latest issue of Communication, the quarterly members magazine of the National Autistic Society continues to provide provocative and thoughtful contributions to the debates that feature so often in the autism movement.

We have Pat Howlin on the question of whether we need to differentiate between the condition of being autistic, which requires respect and understanding, and autistic spectrum disorders which require interventions. And she argues that these are not mutually exclusive categories. Lorna Wing discusses the need for a well thought out ethical framework within which genetic research can be conducted. Given that genetic research into causes and possible cures is going to continue anyway she wants it to happen within an ethical framework that respects the human rights of autistic people.

There are also features on siblings, home education and the experience of classroom assistants supporting autistic pupils in the mainstream.

Larry Arnold writes about his experience as the first ever autistic person to be elected to the NAS board of trustees. He writes about the need for the NAS to continue “to be an organization for the entire spectrum of autism” and reminds us that “newer organizations formed under the umbrella of neurodiversity and ‘aspie freedom’ … also need to be inclusive and work to include people who are not as intellectually advanced as they are.” And , as if to underline the point, there is also a feature on challenging behaviours. These are by no means the exclusive domain of so called ‘low functioning’ autistics. But for many families they define the experience of autism and seem to mark their children as different from the higher functioning autistics whose concern for acceptance and understanding is sometimes mistaken as indifference to the real suffering that can come with autism. This takes us back to Pat Howlin’s article on reframing our attitude both to autism and to autistic people. All in all a very stimulating issue which will provide me with plenty of material for future blog posts.

This shows that a national autism charity can make a serious attempt to embrace diversity and continue to address the problems that arise across the autistic spectrum. It will not always be plain sailing. With such a diverse constituency there are bound to be times when some groups will feel neglected or misrepresented. The current “Think Differently” campaign created a small storm amongst some parents that received extensive coverage in the Independent.

Some autistic adults were also put out when the same campaign referred to the “devastating effect on individuals and families” if the right support was not forthcoming. They feel that most people will miss the subtle distinction between this and the routine references to autism as “this devastating condition” by the epidemic mongers.  

Thoughtless and debasing

What is certain is that nobody could miss the subtle message of this ad campaign, because there is none. Having just watched The Golden Compass I am reminded of the Gobblers who kidnap children in order to steal their souls.

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This is not the latest offerng from Safe Minds or Generation Rescue. This is the New York University Child Care Center. And they do a similar job on ADHD, Asperger Syndrome and Bulimia. Whose Planet is it Anyway? and Autism Vox have both written thoughtful blogs about this campaign. The NAS takes respect for autistic people as its starting point. It will make mistakes. But it is unlikely to stoop to the level of misinformation and abuse that is apparently acceptable to New York University.

December 7th, 2007 Posted by Mike | Autism, Communication, National Autistic Society, Neurodiversity, aspergers, parents | 8 comments