Many misconceptions about neurodiversity and the anti-cure position have come up in blogs recently, and I've found myself addressing them. Ballastexistenz also dealt with a similar issue in a recent post.
Some people wonder if the neurodiversity concept applies only to so-called "high functioning" autistics. Some non-autistic researchers seem to think so [ref]. Even a famous autistic, Temple Grandin, appears to have opinions consistent with this view [ref]. This view, nonetheless, is one I happen to be against. For one, no one seems to agree on how the boundary between low-functioning and high-functioning is established. This is an inherently subjective and error-prone boundary, as is the boundary between autism and "normalcy". But more importantly, it does not make sense to speak of the need to accept human diversity while at the same time denying the diversity of those who are more different than ourselves.
Others believe that the neurodiversity concept is inconsistent with any possible medical liabilities which are relatively more common in autistics. I have addressed this view before in a posting titled Do Co-Morbidities Prove Pathology?
Saying that autism cannot be cured is sometimes interpreted as a claim that autistic people cannot move outside of the diagnostic threshold. It is clear autistics develop throughout their lifes. It is not impossible for a small portion of autistics to appear to "grow out of it". As I have noted, autism diagnostic criteria has moved up the spectrum considerably in recent times, so it is not surprising to hear more and more anecdotes of "full recovery". There are those who argue that such children were never autistic to begin with, but this kind of claim is not verifiable considering there is no medical test for autism. I should caution that I am not saying this to give false hope to parents who would much rather have non-autistic children. I'm just pointing out something that needs to be recognized.
Anti-cure and anti-treatment are often confused with one another. I think it is important to spell out the meaning of cure in relation to autism. To cure autism (based on the generally accepted meaning of the term cure) would entail turning an autistic person into a neurotypical person, and not just helping the person work around some of the liabilities of autism. Because of this, autistics feel that being cured would entail being transformed into a different person, with different dreams, talents and interests. Being cured of autism is therefore akin to ceasing to exist.
When autistic advocates express their opposition to the latest autism treatment, it is often assumed that they do so because they are anti-cure. This is a misunderstanding. None of the autism treatments currently popular are anywhere near a cure as defined above, so being anti-cure has little or nothing to do with opposition to treatment. For example, Michelle Dawson has clearly explained her opposition to ABA on ethical grounds in her essay titled The Misbehavior of Behaviorists.
Treatments are generally opposed because of their unproven effectiveness and potential adverse effects. In their desperation to recover the normal child that they believe is hidden inside the autistic child, parents try many different kinds of treatments, one after the other. These treatments may or may not be harmful in the short- or long-term. They are relied upon based on "thousands of anecdotal accounts". These anecdotal accounts need to be taken with skepticism, as I've argued in a prior post titled Placebo Effects in Autism.
I can't make generalizations about which management approaches are approved or disapproved by autistic advocates. Some might like ABA and others might not, for example. In the table below I summarize what my personal opinion on some of the most popular treatments is.
|ABA||There is a semi-experimental result by Lovaas which supports its effectiveness. The study has been criticized on methodological grounds, as the control group was not randomized, and the evaluators were not blind to treatment. The study also relied on aversives, which are often said not to be in use today.||The Lovaas approach is a conditioning technique that is inherently coercive. There are some reports of PTSD following treatment. There are no follow-up studies into adulthood. The only follow-up study that exists was on the same Lovaas group, so the same methodological flaws apply.|
|Son-Rise||No clinical trials to determine its effectiveness have been conducted. The approach is a form of acceptance therapy.||Given it's non-coercive nature, it is unlikely to have any adverse effects on the child. Parents, however, might be affected due to the false hope this program appears to promote.|
|GFCF Diet||There is no effectiveness data on the GFCF diet as an autism treatment. To the extent that autistic people are more prone to allergies or to having Celiac Disease, it could be helpful, but it is doubtful that it treats autism itself.||It appears to have no adverse effects. Supplementation with calcium would seem to be warranted, however.|
|Multivitamins||There are some placebo-controlled double-blind studies which appear to show that multivitamins (particularly Vitamin B6 with Magnesium) result in certain improvements. Some studies seem to show that they don't. It is unclear if they only help a subset of children who suffer from malnutrition or a Vitamin B6 deficiency.||Natural is not necessarily the same as safe. Vitamins are drugs. In particular, high doses of Vitamin B6 can cause peripheral neuropathy.|
|L-Carnosine||There is one double-blind placebo-controlled study which seems to show it is effective, but this study has not been replicated. There are anecdotal accounts from adult autistics who have found it helpful.||There appears to be no data on adverse effects at this point. Some parents report increased hyperactivity. Again, because something is natural, this doesn't mean it is safe, particularly at high doses.|
|Chelation||There are no studies on the effectiveness of chelation therapy as a treatment for autism. Additionally, there are good reasons to believe that it is generally useless in that regard.||A chelating agent can chelate minerals and nutrients in addition to heavy metals. Deaths due to hypocalcemia induced by certain types of agents have been reported. Long-term effects might include kidney damage. There is little data on possible long-term effects particularly given that parents are often told to keep chelating indefinitely.|
A final issue I would like to address is that of the effect the pro-cure perspective might have on an autistic child. I believe this is a non-trivial issue. Suppose you are told that your personality is not really a personality, but instead the result of an injury, a virus or a poison. What kind of effect do you think this might have on your self-worth?