Is autism a disease?
A QUESTION
Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.
Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?
thanks………I wouldn’t know where to start looking.
The Integral
SOME ANSWERS
Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.
KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?
TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.
KING: You call it disease?
TAYLOE: Yes.
Doctor Grinker in Unstrange Minds wrote:
“In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]
Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development.
In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.
This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)
Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.
Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?
The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology? The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.
I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:
It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.
DISCUSSION
My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept.
But that just mirrors our opponent, who has their own agenda and their own equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.
Some examples:
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“What do you mean by disease?”
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“What do you mean when you characterize autism as a disease?”
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“By your definition is Down’s Syndrome a disease?”
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“Why is it important to you that autism is not a disease?”
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“What would it take to prove you wrong?”
In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.
Some more examples:
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If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?
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If autism is a disease of course we ought to try and cure it.
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Investigating the causes of autism is the same as wanting to get rid of all autistics.
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Saying I have a disease is like saying I am a disease.
Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.
The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy!
A CONCLUSION
I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?
I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease. All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.
It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.
A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,“I’m sorry, Dad. I wish I could have been the boy you never had.”
Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.
