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.
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Comment by Phil Schwarz | April 28th, 2008
I think the fundamental paradigm-shift required — of not just Dr. Tayloe, but of *all* of us — is to learn to separate autism /per se/ from the /handicaps/ concomitant with autism. The former is a set of differences; the latter, obstacles and barriers to be mitigated and overcome.
To those who say “love the child, hate the autism”, I say: learn to love the child /and/ the autism, because the two are inseparable — and focus on fighting the obstacles and barriers.
The *shortest* answer to Integral’s question? “Mu!” — as in the Zen koan about the disciple who asks the master Joshu if a dog has Buddha-nature…
Comment by laurentius-rex | April 28th, 2008
But does a nature buddha have a dog?
Whilst we are embodied beings we are everything that we are when we are, and when we are asleep, we are asleep, and when we are in pain we can be a pain, as I am sure anyone who troubles a bear with a sore head would know.
Did the Buddha never have toothache?
Comment by David Andrews M. Ed. (Distinction) | April 28th, 2008
“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.”
This goes about halfway to answering the issue, but there’s a thorny bit coming up: what about ‘mainstreamers’ letting us teach them strategies to understand us and make allowances for our behaviour?
Othrwise, we’d still be the ones doing the accommodating all the time, even if we didn’t have to ‘change’.
Comment by Harold L Doherty | April 28th, 2008
“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.”
You disregard your own caution about he folly of “quote mining” and then you prefer the quote from an anthropologist to that of a medical doctor when discussing a medical issue?
Keep up the good work Mike,
Comment by abfh | April 28th, 2008
Mike, I agree that this is a cultural issue, rather than a medical issue. Although doctors write the specifications for diseases and their treatment, it is the broader culture that decides whether to view a particular set of characteristics as a disease or as some other kind of difference. Cultures across the world have, and throughout history have had, widely varying opinions as to what constitutes a disease.
For example, in most European countries low blood pressure is regarded as a disease and is routinely treated with drugs. In the United States, however, low blood pressure is considered to be a beneficial condition because it protects against age-related illnesses, and a person who often becomes dizzy because of low blood pressure may simply be advised to eat more salt. This is not just a difference of medical opinion; it also reflects the different health concerns of the people in these particular cultures. Many Americans are very interested in alternative diets, staying young, et cetera. If American doctors tried to prescribe drugs to raise blood pressure, many patients would refuse them.
Comment by bev | April 28th, 2008
I saw no “appeal to authority” in the inclusion of Grinker’s quote. I saw it as an illustration of a different, broader, perspective. Even those who claim autism is a medical issue understand perfectly well that this is not the only way to view it. To pretend otherwise is just legalistic grandstanding.
This was a great post, Mike! Thank you.
Comment by Suzanne | April 28th, 2008
The word disease doesn’t seem appropriate (but that is simply my gut feeling). The word ‘disorder’ does well seem to describe ASD’s as a package of ‘clinically significant impairment’. Being someone who is un-diagnosable due to lack of impairment, i had to keep searching for an appropriate term to describe my autistic qualities. How does “phenotype” grab you?
Comment by abfh | April 28th, 2008
I’ll add that I disagree with Dr. Grinker’s statement, “Autism is thus both a disease and an illness, and it cannot be otherwise.” That is true only in the context of the prevailing culture at the time he wrote the book. If our society were to start looking upon autism as a natural and healthy difference, rather than as something wrong, unwanted, or negative, it would be neither a disease nor an illness.
Comment by David Andrews M. Ed. (Distinction) | April 28th, 2008
Harold Doherty: “…when discussing a medical issue”
Harold, can you prove beyond reasonable doubt that autism is actually a medical matter? I speciallised in this area for over ten years and - although I can find evidence of biological involvement (and, given my espousal of Lewinian theory, it would be stupid of me not to accept the idea of involvement at a biological level!)- I could not find any evidence to suggest that autism is actually a medical issue.
Bev: “Even those who claim autism is a medical issue understand perfectly well that this is not the only way to view it. To pretend otherwise is just legalistic grandstanding.”
Yes. Absolutely. There is more than one way to look at things, and the one to espouse (if one is to espouse a perspective) is the one that makes the most sense of all available data. This is how I arrived at the conclusion that autism is not actually medical in nature, no matter how the defining/diagnostic types of behaviour are mediated.
Comment by Chuck | April 28th, 2008
David,
Given that the CDC only researches medical disorders and has done research into causation of ASD, the US government has defined ASD as a medical issue.
Comment by Chuck | April 28th, 2008
David,
Further support:
Many states are now either requiring medical health insurance to cover ASD treatment or are in the process of legislating it. Psychological disorders are not covered by medical insurance.
Comment by Sarah | April 28th, 2008
And the US government also defined ketchup as a vegetable way back when.
Comment by abfh | April 28th, 2008
Chuck, both of your statements refer to political actions, not scientific proof.
Comment by Mike | April 28th, 2008
Phil,
do you think that all the obstacles/barriers are concomitant with autism? I remain open to the possibility that some may be inherent. I am planning another post on how useful it is to distinguish between autism as a condition and autism as a disorder. Your thoughts will help in shaping my thoughts.
Comment by Mike | April 28th, 2008
Larry,
I do not know if Buddha ever had toothache but the legend of Buddha’s tooth, if true, seems to have caused a lot of heartache.
Comment by Mike | April 28th, 2008
David, you said
“This goes about halfway to answering the issue, but there’s a thorny bit coming up: what about ‘mainstreamers’ letting us teach them strategies to understand us and make allowances for our behaviour?
Othrwise, we’d still be the ones doing the accommodating all the time, even if we didn’t have to ‘change’.”
I agree. We should continue to campaign for accommodations for autistics in parallel with equipping autistics to cope when they inevitably meet with a lack of accommodation.
Comment by Mike | April 28th, 2008
Bev
I think you are right. Harold is grandstanding. My point about quote mining was precisely that you could find near identical quotes that actually mean different things to the speakers and that all quotes should be discussed in context.
This links in to David’s remarks about whether or not autism is a medical condition and Chuck’s objections. I think you can have a condition that is not a disease as such but that does have medical ramifications.
And Sarah, thank you! Ketchup is a vegetable … made from a fruit? I do not think that any government should be the arbiter of scientific truth.
Comment by Mike | April 28th, 2008
Suzanne,
are you familiar with the broader autism phenotype and the concept of shadow syndromes?
Comment by Chuck | April 28th, 2008
abfh,
Then why waste taxpayer money for ASD individuals on the CDC and for legislation for medical insurance if the scientific community has no proof for any medical treatments that would assist ASD individuals?
Comment by andrea | April 28th, 2008
Although both ASD and AD/HD are sometimes coded as “medical” conditions with regards to insurance coverage or other forms of bureaucracy (e.g. scholastic), that is a matter of accounting rather than of medicine. (ADHD is considered to be an “other health impairment” in the realm of the US IDEA.)
Now, I’ll preface this next part by stating that I’m not a doctor, but I’ve had some pathology in my college coursework, and pathology definitions can be found defined in a number of places. To put it simply:
A disease is something that interrupts the normal functioning of an organism. It has a set of defined signs (objective evidence) and symptoms (subjective evidence that the patient gives — non-human animal diseases therefore have only signs, not symptoms*). The causal agents may be environmental, infectious, and/or some kind of physical defect (including genetic). The etiology, pathology, and/or prognosis is often known, but not always.
In contrast, a syndrome is a cluster of defined signs and symptoms, without a defined etiology, pathology, and/or prognosis.
Although ASD is sometimes described as a “disease”, the term “syndrome” is more frequently accurate, as there is not a definite etiology, pathology, and/or prognosis.
Furthermore, diagnostics (DSM, ICD, and others) are descriptive, not prescriptive. Although we have generally accepted treatment plans for addressing the causes and effects of most diseases, the same does not exist for ASD (ABA and other claims notwithstanding). Autistics are not in need of medical care for autism any more than Deaf people are are in need of medical care for deafness.
I think that “syndrome” is also a more useful word because it tends to remove some of the broken-needs-medical-intervention assumptions. Frequently people with autism or Asperger’s need different approaches for parenting, education, employment and such.
andrea
* For reasons I cannot fathom, in plant pathology, the symptoms are the objective evidence of the disease in the plant, and the signs are the objective evidence of the pathogen or pest.
Comment by Mike | April 28th, 2008
ABFH, this is well put.
“Mike, I agree that this is a cultural issue, rather than a medical issue. Although doctors write the specifications for diseases and their treatment, it is the broader culture that decides whether to view a particular set of characteristics as a disease or as some other kind of difference. Cultures across the world have, and throughout history have had, widely varying opinions as to what constitutes a disease.”
And I think it addresses your own criticism of Dr. Grinker. As an anthropologist he tries to study different cultures and their attitudes to the entities that they characterize as diseases in a non-judgmental manner. It is not his place to decide whether a socety is right or wrong in its characterization of disease, or of autism as a disease. He examines the issue dispassionately without taking sides.
On the other hand it is reasonable to ask if anthropologists ought to be judgemental about the cultures they study, especially when studying their own culture, and even more so when they have a personal interest in the study as the parent of an autistic child. That would be an interesting question for Dr Grinker to answer.
Comment by abfh | April 29th, 2008
Chuck: I’d prefer to see those funds reallocated to educational and employment programs and community services, without the use of medical terminology.
Mike: Perhaps I was reading the phrase “it cannot be otherwise” more broadly than Dr. Grinker intended it.
Comment by David Andrews M. Ed. (Distinction) | April 29th, 2008
abfh: “Chuck, both of your statements refer to political actions, not scientific proof.”
Yes. Moreover, the medicalisation of many things comes from what is basically a pathological over-emphasis on medicine as the arbiter discipline in ’science’. This happens despite psychologists knowing more about psychology, and cell biologists understanding cell biology better, and medical physicists understanding nuclear technology and radiation physics better; and it stems for the old days when there were no real qualifications in medicine (i. e., pre-Royal Colleges days in the UK… there are other parallel developments in other countries, I’m sure), and the person who called himself ‘doctor’ was paid in attention, credibility and - naturally - money, regardless of the efficacy of what he was selling!
(This is a likely historical/cultural reason why - even with legitimate practitioners - many today will still refer to the GP as ‘the quack’, regardless of the basis of his/her diagnostic and treatment decisions being a period of training at an authorised school of medicine!)
Comment by David Andrews M. Ed. (Distinction) | April 29th, 2008
“We should continue to campaign for accommodations for autistics in parallel with equipping autistics to cope when they inevitably meet with a lack of accommodation.”
Basically, then, advocating for an interactionist and developmentalist approach.
This is how educational psychologists used to be trained in the UK, when I started my training (which I did by following the BPS diploma syllabus).
Comment by Suzanne | April 29th, 2008
Yes Mike, thank you. I am familiar with Broader Autism Phenotype, and am quite happy with that “self-dx”. I look forward to your follow-up RE autism as a condition and autism as a disorder.
Comment by Suzanne | April 29th, 2008
Thanks for that link on shadow syndromes. I had not been there before. “In order to take a closer look at normal craziness,” we can learn from the kinds of “craziness” that are not so normal.” I felt so at home there.
Comment by Joseph | May 1st, 2008
Darn, I missed your analysis earlier and most of the discussion. Thanks for linking, Mike.
What Chuck says is interesting in that we are often on the same side as the CDC, but in some sense they are ‘the enemy’ if you will. They clearly see autism as a disease that needs to be eradicated. Again, this is not a scientific determination, but more of a philosophical opinion.
Things have been seen in the past as pathologies and no longer are. Left-handedness, even though it might be associated with other things considered pathologies, is not itself considered a pathology anymore.
Why should autism be seen as a pathology? There’s really no good reason or precedent.
Some might argue that it is to improve outcomes. I’d counter that pathologizing autism is a major cause of poor adult outcomes in autism (through institutionalization primarily).
Comment by David Andrews M. Ed. (Distinction) | May 1st, 2008
“I’d counter that pathologizing autism is a major cause of poor adult outcomes in autism (through institutionalization primarily).”
Spot on, Joseph.
Medicalisation causes more problems than it solves: it is based on less-than-exact science. Education, on the other hand (in its more literal interpretation), has the potential to create opportunities for development (even though it too is based on less-than-exact science). What’s the difference?
Medicalisation of something sees it purely in terms of deficiency, whereas education (properly done) has to investigate strengths, reinterpret ‘weaknesses’ as developmental opportunities, and interact with the target person - in a manner that is compatible with that person - in order to promote development.
Comment by Phil Gluyas | May 8th, 2008
It’s not. Pure and simple.
Off topic - Mike, I need to talk to you privately. Could you email me on the addy I’ve given? Thanks.
Comment by Chris | May 26th, 2008
No, weasel words aren’t words that “often have to bear the weight of the user’s political and ideological baggage”. They’re words like “appropriate” in the phrase “We will act on this important issue at the first possible appropriate opportunity”; words, as Theodore Roosevelt said, suck out meaning from a phrase the way a weasel would suck the meat out of an egg.