5.14.2009

Not a Huge Fan: Autism and Biomedical Interventions

A mom from a local, general parenting egroup sent out an email about her new naturopath, and mentioned that "he treats autistic children, too." This doctor just happens to be Leo's former DAN! doctor, Dr. Prattle. Here was my response:

Dr. Prattle is an advocate of the scientifically unsubstantiated "biomedical" approach to treating autism, which involves dietary modification as well as enormous quantities of supplements, creams, injections, and sometimes chelation to remove heavy metals. It is an incredibly intensive and expensive endeavor.

He also makes recommendations for his autistic patients' sensitivities to be treated through a technique called Bioset, of which his wife is a practitioner, and to whom he refers patients -- a ethically questionable practice, but not one that families in shock from an autism diagnosis are likely to question.

The only proven methods for helping kids with autism gain skills are individualized 1:1 therapies, like Applied Behavioral Analysis, Floortime, or RDI. These are also intensive and expensive. Families with newly diagnosed autistic children might want to reserve their energies for methods proven to help their children, and explore biomedical interventions only if they have the extra resources.

Now, I personally know at least two families who swear that Dr. Prattle has made a difference for their children. I know many others who swear by the dietary modifications, such as the GFCF (wheat-free, dairy-free) diet. [Note: Dr. Prattle's testing revealed one of these children to be truly sensitive to wheat and dairy. The same testing showed no such sensitivities for Leo, but Dr. Prattle recommended that we pursue full-fledged biomed/dietary approaches anyhow "because some sensitivities just don't show up on tests."]

I also know that my son's ABA team, who have been working with severely autistic children for ten and even 20+ years, swear that they have never seen any any benefits from Biomedical interventions. [Note: This opinion was given to us six years ago, when we were starting Leo's home ABA program. His team knew that Biomed is mostly time-consuming rather than harmful, and trusted that we'd find our own way eventually.]

If you or anyone you know is reeling from a child's autism diagnosis, the best thing to do is start making connections in your new (and totally ass-kicking) special needs parenting community. Join local special needs parenting boards (e.g., http://groups.yahoo.com/group/peninsulaparentssnk/), join local parenting support groups (like our own SEPTAR, www.septar.org), and read the blogs of people in the autism community, especially those of parents who've been there before you and have made peace with -- and love -- the child they have, rather than the child they thought they would have.

Bubbly Leo
Most importantly: do not let fear override your gut when it comes to making the best decisions for your child.

Please feel free to contact me, or have your friends contact me, if you have any other questions. I mean that sincerely.

10 comments:

  1. I hope people *do* contact you! Yeah, even though we try to keep Nik as GFCF (mostly the dairy) as possible, it has nothing to do with autism...he gets painful gas and migraines, or so it appears! But, yeah, he's still the same autistic little guy no matter what. Just more comfortable.

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  2. Anonymous9:51 PM

    Boy in the Bubbles. (sorry, couldn't resist)

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  3. it's funny how some people imply "unsubstantiated" to mean "illegitimate". It's like a fancy way of saying that if "science" hasn't proven it yet in a double-blind, placebo study then the treatments must not work. Nobody's doing enough of the studies so how would they know that they don't work.

    This is the frustration of a mom who is forced to go off the beaten path.

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  4. @Teach-this: The MIND Institute is doing thorough studies of many biomedical approaches, and also on neurology/vaccines. I will be very interested to see the results.

    In the mean time, I am offering my opinion and personal experience.

    If you've done exhaustive research and are doing what you think is best for your own child, are willing to keep an open mind and learn from new developments in autism research, and are not promoting or making money by saying that your approach will cure *all* autistic children, then you have my respect.

    Some of my best friends are treating their kids biomedically. *rimshot* but very true. And I don't hang out with anyone who's not really, really smart (one of the reasons I love the Bay Area so much) I consider our different paths a matter of differing faiths.

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  5. ...But to be very, very clear, if anyone asks me in person what they should do if their child has autism, I will tell them exactly what I have said on this site in my two most recent autism/biomed posts.

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  6. Well, I'm sure surprised at your vigor in disagreeing with the biomedical approach to autism. I know you didn't think it made a difference for Leelo.

    But I have to speak up for both the biomedical approach and "Dr. Prattle." first, "scientifically unsubstantiated" sounds kind of final. There are plenty of individual studies encouraging the use of this or that supplement/medecine...are these only worth acknowledging if they are the psychiatric medications some doctors recommend for controlling autistic behaviors?

    It's certainly a method in it's infancy, which could be said for every approach other than Lovaas, actually. Nothing else has been around for decades. Of course, the autism explosion is fairly new too.

    Anyway, "Dr. Prattle" does make use of the Bioset methodology - which I no longer use or believe has been very helpful for our child - but he was very clear with us that there were two practitioners he knew to be good, and that we should know one was indeed his wife. He wanted us to know that upfront so as to be clear we should go to the other practitioner if we felt there was any issue. So I don't think there's any questionable ethics there. Most doctors and professional I know feel free to recommend friends' and close colleagues' services, and if there were any "kickbacks" there'd be no way for me to tell. A spouse is a closer relationship - certainly financially - but again, he was clear to point that out.

    And plenty, plenty of people have found various diets to be helpful for their particular child. I tried one and "got proof" - she was better within 3 days. not recovered, of course, but noticeably better.

    there's plenty of stuff out there that I'm not trying -or have tried and decided didn't work for us - but I'm trying to be real careful not to make blanket judgements over how those therapies would work for anyone else. I do try to warn folks that the current biomedical approaches are expensive in both cost and effort - but then again, after ABA everything looks cheaper in comparison.it's just easier to get funding for ABA than for biomedical treatments.

    I just really, really wish we already understood the cause, and the best treatment, for the autism in our kids. Right now it seems we're all flailing around as best we can, trying to keep our little lifeboats afloat in the stormy sea of autism.

    mb

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  7. @mb Thanks, always, for putting your perspectives out there, and for being respectful rather than judgmental.

    I always felt vaguely ooky about Dr. Prattle but no one else was giving us the kind of hope we were desperately craved. The fact that he continued to push biomed even after my son (unlike your child) tested negative for the primary markers was the first wedge.

    And, to us, he never disclosed that the practitioner was his wife and in fact they were both very cagey about it with us -- I finally noticed that they both had the same baby pictures on their desks and asked him outright.

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  8. I just stumbled across your blog while doing research for my own blog. I have just started my blog to try and help overwhelmed moms navigate the crazy world of special needs in Vancouver BC. I am intrigued by your posts and comments and will be a happy watcher of your blog! I understand that you folks in the US have a more complicated situation on your hands because you have to navigate a privatized medical system, which can often lead to self serving medical practitioners. On the plus side you have more doctors doing the work to get to the bottom of this autism puzzle. Hopefully, down the road, we will have a clear picture of what is really going on because of the pioneering work they are doing. In the mean time keep up the great work on educating parents to be savvy and aware.
    I have an autistic son. We put him on a gluten free diet and saw a significant difference. He is not 'cured' but he is better.

    Thanks
    Buffy Ramm

    buffyramm.blogspot.com

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  9. @Buffy, say hi to my mom. She's a native of your town and is staying with her sister just south of downtown, for the month of October.

    I'm glad your son is better, and I'd love to know details. Most people I know whose children have improved with a GFCF diet had comorbid dietary intolerance, allergy, or GI issues, with resulting discomfort that was exacerbating behaviors and/or withdrawal. Sort of how my son's behaviors improved measurably (we have data) once we put him on Claritin -- turned out he had seasonal allergies. But it was the allergies we were treating, not his autism -- improved behaviors were merely a very welcome side effect.

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  10. This is a thought-provoking post. There seems to very much be an us vs. them school of thought when it comes to autism treatment. It's very similar in a person's belief in mainstream vs. integrative and alternative medicine approaches. It seems that the people that who are less concrete thinkers are more open to alternative approaches. For others, if it is not scientifically proven, they want no part of it. For me, it boils down to beliefs and values...the only right intervention or strategy is the one that works!!

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Respectful disagreement encouraged.