Whose Planet Is It Anyway?

Monday, September 18, 2006

But You Use Therapies

One of the Autism Hub bloggers, Soapbox Mom, wrote about an argument she got into on a biomed parents' forum. After she posted about acceptance, some of the parents on the forum called her a hypocrite because she took her son to speech therapy. If she could love and accept her autistic child while using this therapy to improve his speech, they argued, then how could she criticize parents who were using biomed treatments with the hope that their kids' speech would improve? After all, they were trying to change their autistic kids in the same way, weren't they?

Soapbox Mom got frustrated because she couldn't think of a good, quick answer to that argument. And to be frank, there isn't one. Acceptance is about love, understanding, and positive attitudes, not about the use or avoidance of particular therapies or diets or supplements or drugs. There is no list of Good Therapies with a Neurodiversity Seal of Approval. It all depends on the reasons for making the decision.

Like anything else, it is possible to choose speech therapy for the wrong reasons. Most parents who take a child to speech therapy want to help the child to communicate more effectively and to feel less frustrated. Certainly that is a good thing, but there are some scenarios where it might not be a respectful and accepting choice.

What if a minimally verbal autistic teen has been in speech therapy for many years, has made very little progress in learning to speak, finds the therapy pointless and depressing, and is much happier communicating in sign language or with a keyboard?

Or what if a child has no trouble speaking clearly enough to be understood, but the parents insist on speech therapy anyway because they are embarrassed about having an autistic child and want to get rid of all traces of his natural monotone voice and make him indistinguishable from his peers?

In the Deaf community, speech therapy is a hugely controversial issue. For many years, hearing parents were advised to teach their children to speak as clearly as possible, rather than teaching sign language. The goal was to help their children fit into mainstream society. Deaf activists contended that this choice showed a lack of respect and acceptance.

Can a parent who uses biomed treatments be a loving and accepting parent? I believe that this also depends on the family's particular circumstances and the reasons for that choice. There is a subculture of alternative medicine enthusiasts who take dietary supplements with every meal, chelate themselves periodically, and undergo other detoxification regimens to cleanse themselves of the pollution in the modern environment. If an autistic child happens to be born into such a family, he's going to get all sorts of biomed treatments, but that doesn't necessarily mean that his parents hate his autism, are cruel or uncaring, or lack respect for him. To the contrary, some of these families are crystal-gazing New Agers who brag about what a wonderfully spiritual and enlightened Indigo Child they have. If their child weren't autistic, they would still give him a gazillion supplements with every meal and treat every skinned knee with alternative therapies. That's just part of their culture.

Another point to consider is that many of the biomed parents are autistic themselves (heredity being what it is) or have significant autistic traits. So when they respond to arguments for acceptance by yammering on about the biomed wonder of the week, maybe that's just a perseveration speaking, rather than a rejection of the idea of acceptance. Such parents may be misguided, but they're not necessarily our enemies, and we should not assume (as to those who haven't said anything hateful) that they don't care about their children's feelings.

To be clear, I am not in any way suggesting that those who peddle bogus treatments should be given the benefit of the doubt. Quacks who prey on vulnerable parents by spewing horror stories about autism are liars, thieves, cheats, frauds, and total scum, and they deserve to be kicked around without mercy. But they are most effectively targeted by pointing out their lack of professional qualifications and their lack of sound science—not by questioning the motives of the parents who have been taken in by their slick schemes. We don't always know the parents' motives. (Unlike the quacks, whose motives are greed, greed, and more greed.) Ultimately, the best way to end autism quackery is to demonstrate that the horror stories are false and that there are large numbers of happy and thriving autistic children and adults.

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9 Comments:

  • Hi abfh-
    Thanks for this post. You have summed it up quite nicely. Now I'm going to spend the rest of the day cleaning my purple house and muttering to myself, "Why didn't I think of that?"
    Also, thank you for your kind words on my last blogpost. It means a lot, really. All of the commenters made some good arguments to continue blogging (with the exception of one well-known nimrod). I'm still mulling it over as I clean.

    By Blogger Soapbox mom, at 11:36 AM  

  • What if it was called 'speech school' instead of 'speech therapy' ?

    There's nothing wrong with teaching autistic kids with the goal that they become the best autistic adults they can be.

    Children are sent to school because people recognize education is important, not to defeat childhood.

    The debate over whether certain teaching methods are appropriate (ABA being the most controversial one) is another matter altogether.

    I think Amanda wrote about that. Let's see... What not changing us means.

    By Blogger Joseph, at 12:05 PM  

  • Nothing wrong with teaching autistic kids with the goal that they be the best autistic adults they can be, true, but so often "best" means "most neurotypical-like".

    I would prefer, "communication school," or even "communication education" (because schools can be icky in general to). Rather than specifically speech. There's so much emphasis on speech that people forget about the best way a person can communicate.

    By Blogger ballastexistenz, at 12:20 PM  

  • "It all depends on the reasons for making the decision."

    exactly right

    By Blogger jypsy, at 2:30 PM  

  • This was a very well balanced essay. Thank you. I hadn't thought about the crystal gazers having a culture, but you are right. I was a sort of biomed parent, trying to cure colds, etc, with stuff from the healthfood store. To some degree, I still do a little of it. But now I'm backing off of the gram of vitamin C powder drink since there's some evidence that huge doses of antioxidants might not be that great for us.

    I hadn't thought about speech therapy at some point possibly being over the top. Dr. Gernsbacher's son absolutely could not make some sounds when he was young, might still be like that... she didn't keep pushing because he could communicate quite clearly with a keyboard that he couldn't do it, even though he tried and he wanted to.

    By Anonymous Camille, at 4:09 PM  

  • Great, great, great! I have been brainstorming a post on this very topic. What I have found interesting--our daughter's neurologist has always encouraged us to seek out any form or communication for our dd. Her speech therapist was pretty against the use of sign or picture cards. We saw how much help the alternative communication was, so we use that. She still has ST, more for oral motor function (not necessarily ASD related). Anyway, we've had the benefit of a great doc, not everyone does.

    I encourage ALL parents to seek any form of communication that their child is comfortable wiht. Once again, great post!

    By Blogger S.L., at 4:21 PM  

  • SBM: "All of the commenters made some good arguments to continue blogging (with the exception of one well-known nimrod)"

    Can we have three guesses who you mean?

    I don't think he likes me at all....

    David N. Andrews MEd (Dec2006)
    Applied Educational Psychologist
    Kotka, Finland

    By Anonymous Anonymous, at 5:27 PM  

  • David-
    Do you really need three guesses?
    No, he doesn't like you at all, but then again, who would want his endorsements? I don't think he likes me very much either, so I think I'm in good company. ;)

    By Blogger Soapbox mom, at 10:36 AM  

  • SBM: "Do you really need three guesses?"

    Heh... do I chuff as like! :P

    "No, he doesn't like you at all, but then again, who would want his endorsements?"

    Couldnae gie a rat's airse for his endorsement, really. That man hates me and others who are autistic but can do stuff because we fuck up his chances of making money out of his kid, basically.

    "I don't think he likes me very much either, so I think I'm in good company. ;)"

    I'll go with that :D

    By Anonymous Anonymous, at 9:44 PM  

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