Friday, March 31, 2006

On Tolerance, Cures and Neurodiversity

Tolerance is not about letting kids do whatever they want. Being anti-cure is not the same as being someone who does not want children to be helped. Neurodiversity is not an ideology that fails to recognize the liabilities of different neurological wiring.

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.

TreatmentEffectivenessAdverse Effects
ABAThere 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-RiseNo 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 DietThere 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.
MultivitaminsThere 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-CarnosineThere 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.
ChelationThere 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?

19 comments:

  1. Joseph,
    In the short time that you've been blogging you've written some wonderful things. This is one of your best. Thanks

    ReplyDelete
  2. You would feel really bad about yourself. At least I would. I wouldn't feel like me anymore.

    Thank you for the great evaluation of all the treatments we know about.

    ReplyDelete
  3. Nice job.

    One correction type thing...L-carnosine can increase seizure activity.

    L-carnitine, on the other hand, can REDUCE seizure activity if there is a relative or non relative carnitine deficiency. This one is especially popular in the Rett Syndrome treatments...and in mitochondrial disorders (which can cause autism plus).

    Overall, wow. Nice. Impressive. I like charts.

    ReplyDelete
  4. Hi, Joseph, I've been enjoying your new blog, too.

    Re the various therapies, you forgot Occupational Therapy, Speech Therapy, Sensory Integration Therapy, Relationship Development Intervention, Auditory Integration Therapy, Music Therapy, Lego Therapy, Jigsaw Puzzle Therapy, the Peanut Butter Sandwich Intervention, and much more!

    And you didn't even touch on B.A.T. (Bainian Acceptance Therapy -- thank you jypsy!)

    Great blog, though.

    Anne

    ReplyDelete
  5. Great information. I really enjoy reading it.

    Take care,

    Michael Boll
    host
    www.autismpodcast.org

    ReplyDelete
  6. I just looked at Michael Boll's site, and there's another one you forgot, Joseph -- Compliance Training!!

    The idea of Compliance Training makes me think of Amanda's zometool analogy.

    Maybe there's a Zometool intervention, too!

    ReplyDelete
  7. You claim you can't turn an autistic person into a neurotypical person. You ignore that fact that virtually all autistics were born normal and did not become autistic until they were poisoned with mercury. So, in curing autism, you would not be changing the person, but merely giving the person back the normalcy that was taken from them.

    ReplyDelete
  8. One correction type thing...L-carnosine can increase seizure activity.

    Isn't it supposed to act as an anti-convulstant? Although perhaps the increased seizure activity has to do with the reports of hyperactivity.

    ReplyDelete
  9. Re the various therapies, you forgot Occupational Therapy, Speech Therapy, Sensory Integration Therapy, Relationship Development Intervention, Auditory Integration Therapy, Music Therapy, Lego Therapy, Jigsaw Puzzle Therapy, the Peanut Butter Sandwich Intervention, and much more!

    And you didn't even touch on B.A.T. (Bainian Acceptance Therapy -- thank you jypsy!)


    Yes, of course. There are just so many. It would make for a huge table.

    ReplyDelete
  10. You claim you can't turn an autistic person into a neurotypical person. You ignore that fact that virtually all autistics were born normal and did not become autistic until they were poisoned with mercury. So, in curing autism, you would not be changing the person, but merely giving the person back the normalcy that was taken from them.


    John, maybe you'll find an audience who will believe your nonsense at the EOHarm list.

    ReplyDelete
  11. Joseph,

    Perhaps you can be interested on the Wade´s last post
    http://www.injectingsense.blogspot.com/
    and the commments we share there. I do not want to repeat myself and we explore several ideas there related to autism and treatments meaning.

    bronwyng
    I understand how you can feel. Expressed this way for me is wrong. But there are other forms to see the overall picture than these expressions present. Please let me know if you are interested on my view. I do not want to disturb you anyway if you are not interested.
    Thank you in advance.
    María Luján

    ReplyDelete
  12. John is PNG @ EOH

    I can't say I'm surprised.

    ReplyDelete
  13. hey joseph,

    im so glad to discover your blog that speaks about autism... im a sped teacher and just new in this field. i will learn more because of your blog. keep writing!

    ReplyDelete
  14. Thanks Debra. You can find a bunch of other active blogs about autism, with a positive message, over at Autism Hub.

    ReplyDelete
  15. Andrew Lehman8/23/2008 7:37 PM

    I would suggest that autism and other conditions characterized by maturational delay have evolutionary origins.

    See cause of autism #1 http://www.neoteny.org/?p=83, cause of autism http://www.neoteny.org/?p=84, cause of autism #3 http://www.neoteny.org/?p=85.

    For an overview click here http://www.neoteny.org/?cat=7.

    ReplyDelete
  16. Hi, Interesting blog.
    This my first view of your blog. Very interesting.

    As a father of two children 10 months apart (one child has ASD),
    i agree with your thoughts on anedotal accounts by parents.

    Unfortunately, the parent's records are not being treated seriously. As far as i'm aware there is no serious researh into parents observations.

    I have an open mind about my childs Autism: I learn, understand and accept his autism.

    There is a lot of product distraction out in the market place. As Autism numbers rise, so do available types of unproven therapies, products and systems. leading to parents gambling on their child's future.

    ReplyDelete
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