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.
- These alternative therapies do not work.
- The science behind them is flawed.
- Some of these treatments are potentially dangerous.
- 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.
Comment by mayfly | August 29th, 2008
Dr. Jordan’s comments in Communication will undercut whatever is presented in his book. Are parents of children who cannot communicate, are not toilet-trained, have no interest in social activities, cannot cross the street alone at teenagers supposed to think their children are all right?
No, they know their children need help. Unfortunately this leads many to pursue unproven treatments. The doctor would be better off hot attacking those pursuing the treatments, but understanding it is the love for their children which drives them to it. Dr. Jordan has not walked an inch in their shoes. yet chooses to malign them.
I’d love to recommend the book to some I know who are pursuing DAN treatments, but his attacks on these people render that idea fruitless.
Low-functioning autism is a horrendous condition. Those who suffer it are very human and very much negatively impacted by it. Curing it would not be evil nor dehumanizing. The problem is the unproven hope offered by Dan doctors many of whom truly believe in what they offer.
Comment by mayfly | August 29th, 2008
I meant to say Dr. Fitzpatrick
Comment by mayfly | August 29th, 2008
Here is Dr Offit talking about his new book whicch seems to cover the same subject in part. No he does not attack those pursuing alternative medical cures. Strangely, this effective talk is linked from Hating Autism.
Comment by Kev | August 29th, 2008
Mike - do you mean the upcoming issue of Communication or the one current now? I can’t find it
Comment by Mike | August 29th, 2008
Kev
mine arrived yesterday. I guess yours must be still upcoming
Comment by RAJ | August 29th, 2008
Is this the same MIchael Fitzgerald who wrote a book on ‘autism’ genius and where his ideas (foolish ones) that was discussed in the following article published in the BRitish tabloids:
http://www.telegraph.co.uk/earth/main.jhtml?xml=/earth/2008/02/21/sciaut121.xml
Comment by abfh | August 29th, 2008
Professor Jordan’s argument reminds me of a similar distinction that was made in 1973 as to homosexuality, when gay activists in the United States succeeded in their effort to get the medical disorder label taken out of the DSM. For a while, there was still a category for “ego-dystonic homosexuality,” which referred to people who felt uncomfortable with being gay and who thought of themselves as disordered. That category was later removed.
Comment by Mike | August 29th, 2008
Mayfly,
can you point to anything in what I have written or quoted that supports your criticism of Dr Fitzpatrick?
If you read his book MMR and Autism you will know that his son was developing normally until he was 18 months old and then began to regress. Dr Fitzpatrick is very frank about his own “state of shock, grief, anxiety and anger” in the months that followed.
He does not deny that these children need help. Neither does he malign parents for seeking to help their children. He is critical of the consequences of embracing the DAN! perspective on autism and subjecting children to quack cures. And I agree with him.
Comment by mayfly | August 29th, 2008
“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.”
Is derisive. He is chiding the parents as melodramatic. These parents are concerned for the welfare of their children. My daughter’s pediatrician after hearing about her loss of language and arrested mental development told us to wait and see what happens. Foolishly, for months, we took his advice. Perhaps that’s why I have little patience for someone who belittles parents’ testimonies about their children.
I too am critical about embracing DAN, but do not see those who do as any more than loving parents. I find Dr Offit’s talking about the vulnerability of parents which autistic children a much better approach than Dr. Fitzpatrick.
In any argument hating the other side does little good. Speak from the strength of the science. There is no need to attack the parents seeking help.
Perhaps in his books Dr. Fitzpatrick does that. In the first quoted passage he does not.
The second quote is very good
“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.’”
Parents need to tell the good and the bad about their children.
Comment by laurentius-rex | August 29th, 2008
Rita Jordan does not have much grasp of the issues and she has missed the point entirely.I was surprised to see that rubbish in Communication given the different gloss on disability that comes from the social model, she is still well within the old medical model paradigm even if she is being apologetic for it’s worst aspects. What is more I doubt if Rita would have been writing any of that if it were not for the pressure and influence coming from us, that has changed her thinking.
Comment by laurentius-rex | August 29th, 2008
Rita Jordan’s article was in the last issue My latest communication has an article by SBC reviewing that latter day Levi Strauss (Claude not the jeans fellow) Murray’s book on representation and autism.
The cheek of it all anyway, I notice Murray used photographer Jane Bown’s picture from the 1966 Observer article (that one on my web site) for his cover picture.
Well that’s not the worst of it there is an article from Autism Speaks which implies that the only good autist is a dead one, they want our brains, sadly not while they are still in our bodies.
S’funny you have an eye for seeing what pleases you in any publication I have an unerring eye for what annoys me
Comment by Mike | August 30th, 2008
RAJ
I am referring to Michael Fitzpatrick, a doctor in general practise in London; not Michael Fitzgerald, the professor of psychiatry at Trinity College Dublin.
Comment by laurentius-rex | August 30th, 2008
Well just as well you were not referring to Fitzcarraldo eh, a movie by one of my favourite directors, Werner Herzog who undoubtedly has the traits of a media eccentric if nothing else,
Hey Mickey boy the Irish Fellow from Trinity, gonna have a bash at him, Kinski might do as well, you’ll be on safer territory there at least he is dead.
Comment by Mike | September 1st, 2008
Mayfly
you quote this to prove your point,
“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 do this. They include it in their sig files. It is as if they define their child purely in terms of his real (and illusory) disabilities. The illusory disabilities are those that depend on arcane analysis of blood, hair and urine samples emanating from “laboratories” that make their money by always testing positive for the toxins that meet the nostrums of DAN! doctors and “other” practitioners.
And if you think that Dr Fitzpatrick is being too harsh with parents of autistic children, bear in mind that he is also a parent of an autistic child and has been much maligned on a number of biomedical forums.
Comment by Another Voice | September 3rd, 2008
This is another nicely done post, thank you for the time and effort spent doing things properly. You close on a very interesting note;
“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.”
I would suggest that this attitude does not exist in either camp. The debate, if we can call it that, has taken on all of the trimmings of a holy war. There are clearly folks in each camp who simply love to fight. There is no longer even lip service being paid to trying to resolve differences.
I have spent a couple of years in each camp; my travels have not significantly increased my knowledge of autism but I have witnessed an enormous number of ways to say “they” are wrong.
I think that the best course of action would be to start a camp for those who are willing to focus on those things we can agree upon. Parents are faced with challenges, a good school program is not different depending upon what causes autism. Can’t we all agree on that and work toward achievement. We are doing next to nothing for adults who are autistic. (Please don’t jump all over my wording,) Why can’t people sink there teeth into bettering or in most cases creating those programs.
If the big issues that impact the lives of the people in the autism community were already under control and being serviced by very good programs; I would say debate, argue and amuse yourself. We are not even close. We need to get over the beliefs portion of autism and start helping each other.
Comment by Swordplay-Focused Autistic | November 4th, 2008
Perhaps some positive growth could possibly come from observing the autistics who seek to help each other, and often succeed in ways the “NT” community does not appear to understand.
Lower functioning autistics can become slightly higher functioning with the assistance of a higher functioning autistic acting as a translator, so to speak. I have witnessed this.
It appears to me, and I am not the only autistic who thinks this way, (look for us, we exist!) that we are more different than disabled. It appears to some of us that much of the difficulty inflicted upon all but the lowest-functioning autistics tends to come from how we are treated or miss-treated for our differences. Telling us how different rather than disabled we are can be as negatively impacting. Autism acknowledges reality as best it can, the attempts to soften reality for the protection of our egos can cause debilitating confusion. The over-focus on the positive sides can cause similar confusion when the autistic mind experiences negative feedback, leaving the autistic unable to cope. Autism is certainly fact-centric, pragmatic, and grounded in immediate experience. Tricks to “protect” or “fix” us, whatever the angle, can be harmful.
Note: the word “can” was used, rather than “always”
Intensely analytical minds can easily be overwhelmed by the confused stimuli that the “NT” community seems to operate by. Perhaps this middle ground between curing and championing Autism can be found in attempting to understand and make the social mess understandable to Autistic minds.
Just another attempt to get all these “waring factions” to listen to those that they are warring over. Good luck in your campaigns both for and against autism, the very act of taking sides on the behalf of autistics render your good intentions nearly moot.
Pingback by blog-thing : The Wrongs and Rights of Reply | December 1st, 2008
[...] contains a “Right of Reply” to Mike Fitzpatrick’s excellent article, “Defeating autism - a damaging delusion” that appears in the previous issue, by Stephen M Edelson, who has inherited Bernard Rimland’s [...]