Therapies without Limit

NO LIMIT !

Image by REMY SAGLIER - DOUBLERAY via Flickr

Before I started blogging about autism, the most controversial therapies I’d come across were ABA and the GF/CF diet. I knew there must be therapies I hadn’t heard of yet, but I had no idea they were in the hundreds, or how shocking some of those therapies would be.

Sometimes I discover that what I thought was an interesting and harmless therapy, is actually quite destructive and largely disproven, such as Facilitated Communication. I’ve also stumbled across some therapies that look like more extreme versions of therapies we already use with success with our son, that make me wonder where the line gets drawn; such as the way we use deep pressure with our son, but find “packing” highly disturbing.

Every so often I hear of a therapy that makes me wonder just how desperate and gullible some parents are, such as fecal transplants. I thought I was a desperate parent, but I will not try anything and everything in the unfounded hope that it will “cure” my son’s autism. Fecal transplants might sound just silly and gross, but they’re also dangerous.

Speaking of dangerous, I hadn’t heard of giving an autistic child chelation before I started blogging either.

If you’re not shocked enough yet – and maybe you’re not – then how about electric shock treatment, which is still being used today: Shocking autistic people many times a day as a behavioural intervention. To really understand all the horrors and abusiveness of this treatment, you’ll need to read about it for yourself. If you have experience with, and understand, autistic people, you will find it even more disturbing.

And just when you think you’ve heard it all (though by this point in my post you should know better than to think that), there’s chemical castration.

By now I should be desensitized to writing all of those therapies down, but they still deeply upset me. That anyone would consider doing these things to my own son, endangering his life, or seriously damaging his long-term mental and physical health, takes my breath away.

And yet, I do understand what those parents are thinking. From a parenting perspective, autism is hell, it is exhausting, and it can feel like a prison you’re locked into for the rest of your life. Those feelings are particularly deep and strong in that first year as you adjust to the diagnosis. During that time the parent is also very unlikely to have done previous research into autism therapies, and will be vulnerable and open to suggestions about how they might reveal the child they’d hoped to have.

Add to all that, the fact that just about any idea can be made to sound rational with enough sciencey talk and confidence in its presentation. Perfectly rational human beings get sucked into what look like utterly irrational acts, whether that be hurting other people or hurting themselves. Which is why we have to be ever vigilant, with a healthy dose of skepticism. Especially when we have seemingly limitless power and control over the bodies and minds of such vulnerable people. There seems to be no limit to “therapies”, so it is up to us to set our own limits.

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11 Responses to Therapies without Limit

  1. SM69 says:

    Grouping GF/CF diet and ABA support with aversive electroshock and packing use seems somewhat extreme.

    Further, a few days ago you said, you argued that parents know best what is good for their kids, are you now suggesting that 80% of the parents who report a beneficial outcome to a GF/CF intervention are all misled and wrong?

    “Perfectly rational human beings get sucked into what look like utterly irrational acts..”

    What are you referring to- parents making judgements based on blogs perhaps? or unless it is because the therapies were tried and found not helpful in your case?

    Cochrane review: The results for the first study indicated that a combined gluten and casein free diet reduced autistic traits and the second study showed no significant difference in outcome measures between the diet group and the control group. This is an important area of investigation and large scale, good quality randomised control trials are needed. None of the studies reported on adverse outcomes or potential disbenefits.

    Nutr Neurosci. 2010 Apr;13(2):87-100.
    The ScanBrit randomised, controlled, single-blind study of a gluten- and casein-free dietary intervention for children with autism spectrum disorders.

    Abstract
    There is increasing interest in the use of gluten- and casein-free diets for children with autism spectrum disorders (ASDs). We report results from a two-stage, 24-month, randomised, controlled trial incorporating an adaptive ‘catch-up’ design and interim analysis. Stage 1 of the trial saw 72 Danish children (aged 4 years to 10 years 11 months) assigned to diet (A) or non-diet (B) groups by stratified randomisation. Autism Diagnostic Observation Schedule (ADOS) and the Gilliam Autism Rating Scale (GARS) were used to assess core autism behaviours, Vineland Adaptive Behaviour Scales (VABS) to ascertain developmental level, and Attention-Deficit Hyperactivity Disorder – IV scale (ADHD-IV) to determine inattention and hyperactivity. Participants were tested at baseline, 8, and 12 months. Based on per protocol repeated measures analysis, data for 26 diet children and 29 controls were available at 12 months. At this point, there was a significant improvement to mean diet group scores (time*treatment interaction) on sub-domains of ADOS, GARS and ADHD-IV measures. Surpassing of predefined statistical thresholds as evidence of improvement in group A at 12 months sanctioned the re-assignment of group B participants to active dietary treatment. Stage 2 data for 18 group A and 17 group B participants were available at 24 months. Multiple scenario analysis based on inter- and intra-group comparisons showed some evidence of sustained clinical group improvements although possibly indicative of a plateau effect for intervention. Our results suggest that dietary intervention may positively affect developmental outcome for some children diagnosed with ASD. In the absence of a placebo condition to the current investigation, we are, however, unable to disqualify potential effects derived from intervention outside of dietary changes. Further studies are required to ascertain potential best- and non-responders to intervention. The study was registered with ClincialTrials.gov, number NCT00614198.

    ABA- what ABA are you talking about, the Lovaas ABA of the 70s? or more recently developments, such as good ABA (it exists), VB, natural environment teaching, all based on the principles of ABA.
    Meta-Analysis of Early Intensive Behavioral Intervention for Children With Autism.

    Journal of Clinical Child & Adolescent Psychology, May 2009
    by Richard P. Hastings, Svein Eikeseth, Erik Jahr, Sigmund Eldevik, Scott Cross, J. Carl Hughes

    Summary:
    A systematic literature search for studies reporting effects of Early Intensive Behavioral Intervention identified 34 studies, 9 of which were controlled designs having either a comparison or a control group. We completed a meta-analysis yielding a standardized mean difference effect size for two available outcome measures: change in full-scale intelligence and/or adaptive behavior composite. Effect sizes were computed using Hedges’s g. The average effect size was 1.10 for change in full-scale intelligence (95% confidence interval = .87, 1.34) and .66 (95% confidence interval = .41, .90) for change in adaptive behavior composite. These effect sizes are generally considered to be large and moderate, respectively. Our results support the clinical implication that at present, and in the absence of other interventions with established efficacy, Early Intensive Behavioral Intervention should be an intervention of choice for children with autism.ABSTRACT FROM AUTHORCopyright of Journal of Clinical Child & Adolescent Psychology is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder’s express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.

    OK- now that you have grouped all interventions into the same bag labeled as bad- what do you actually propose to help children with autism? Write a blog perhaps?

    • Gosh, you really do have a bee in your bonnet don’t you!

      Might I suggest you re-read my post, and actually read what I said, not what you decided I must have meant.

      I did not group all those therapies together as bad as each other – you did. The point of my post was very clearly talking from personal experience about what I have discovered since I’ve started blogging. I wrote about how I’ve discovered some therapies are actually controversial, some are dangerous, and some I’ve never thought of or come across before.

      You have also treated my example links as if they are the only data I have encountered about these therapies. They are – of necessity – an example of the data I have encountered. At no point did I purport to be presenting all possible data or studies on these therapies, just examples of the controversies that exist out there.

      Might I add that if you’d actually read any of my other blog posts, you’d have seen that I did ABA therapy with my son, and have said that I found it very effective.

      Oh and, if you had actually clicked on other provided links and not just the ones you decided were good fodder for a pointless attack, you’d have seen that one of my very first links goes through to the hundreds of therapies available, and the fact that other therapies (such as speech therapy) are well recognised and widely used, and backed by plenty of quality evidence. Again, if you had actually read my other blog posts, you’d have come across the many times I have talked about other (useful and proven) therapies.

      Here is an example of such a post, where I directly mention ABA. It wasn’t hard to find – I use plenty of tags and categories in my blog.

      Please read more carefully before going off on an irrelevant tirade in the future. Thanks.

    • Oh and, in regards to your issues with thinking GF/CF diets are actually effective, the studies I have seen (as usual, there are multiple studies around), that have controlled for placebo effect, show that the “improvements” are either minimal or none. In order to understand the huge and measurable impact that placebo has on parental claims of improvement, I recommend that you read Ben Goldacre’s “Bad Science”. You also need to take into account variables such as whether children in the study had proven food intolerances – in which case the improvements you see in behaviour are essentially the same improvements you’d see in the behaviour of any child having an allergen removed from their diet. Not all autistic people have food intolerances.

      As for “lack of disbenefit” from the diet, this is too broad a claim. There are disbenefits in the form of potential nutritional deficiencies resulting from the diet, and the costs and time involved, for what is little or no improvement in autism.

      In general, I find this is a good and objective overview of the diet, and has good links to further studies, including separating out the CF from the GF aspect: http://autism.healingthresholds.com/therapy/gluten-free-casein-free-gfcf

  2. SM69 says:

    I actually did read your post- perhaps you are not aware of the message you convey- let me explain it:
    ABA GF/CF controversial.
    Is there more?
    Yes hundreds more: Facilitated communication, packing, deep pressure, electric shock, chemical castration, packing, fecal transplant, chelation.

    Then you said:

    Limitless power and control over the bodies and minds of such vulnerable people.

    And:
    During that time the parent is also very unlikely to have done previous research into autism therapies, and will be vulnerable and open to suggestions about how they might reveal the child they’d hoped to have.

    What do you think this mean? Therapies are bad-

    If to understand your post require reading your entire blog to know you have done ABA and are pleased with it- well, perhaps rethinking the writing, because it is certainly not clear. I suggest you get a high school student to make a summary of your blog and see what he/she comes up with- the bottom message is intervention are bad- children are vulnerable, parents are misled especially in the early day after a diagnosis.

    I am afraid, if you want to learn from blogs, you will have to go a little deeper than this or read blogs that all combined cover more accurately the pro and cons of an intervention. Ideally, go to the papers too, and especially the DATA, not the discussion.

    Good reference to Ben Goldacre- It just proves my point.

    I have to apologize though, I did not want to reply to the above post, as I knew I was going to hit a brick wall. A waste of time, no point to try to discuss other sources of information. I have much better things to do. But I will leave you with another recent published work in the Lancet- this time with regard to ADHD (which you will know from your personal blogging experience and the one of a mother is also very common in autism). Well, ADHD is helped by removing food the child is intolerant to from the diet, not a big surprise, we have know this a long time ago, but good to have it published.

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62227-1/abstract.

    Why didn’t you mention the excessive use of Ritalin-like drugs in kids when simple, mostly not even explored interventions have been proven effective, like the diet modification the Lancet present.

    “Children as young as four are being given Ritalin-style medication for behavioural problems in breach of NHS guidelines, the Guardian has discovered, prompting the leading psychological society to call for a national review.”

    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(10)62227-1/abstract

  3. SM69 says:

    Last link incorrectly pasted:

    http://www.guardian.co.uk/society/2011/mar/18/behaviour-drugs-four-year-olds.

    I suggest you get a high school student to make a summary of your blog- I meant post.

  4. SM69. It is my paid job, to convey information clearly. I have been teaching, and marking essays and exams -at university level – since I was 19. I am now 32. My husband is a full time lecturer. Again, his job is to convey and read for clear meaning. He does it very well, and I get him to proof-read almost every post I do to pick up on any issues that require clarification or expansion. He saw no flaws in my post either. Yet both of us – university academics who teach and mark essays for a living – saw deep and obvious flaws in your own writing. Perhaps it is you who requires a “high school” student to read what you write before you publish. I am guessing English is your second language, or you left school early, and though these are not things to be ashamed of in the slightest, they may explain why you are having such difficulty with reading comprehension (and with expressing yourself clearly). I wish you all the best with furthering your education.

  5. Melissa says:

    No, actually I was referring to the fact that I read the post. I came back to it, just to give it another read and saw all the drama (forgive the lack of a better term). If I had thought you were being too harsh, or if I’d misunderstood, I’d have commented when I originally read it… but frankly, BOTH times I read it, I think I took it as you’d originally intended it.

    Personally, and this is just me, I’ll tell you if I don’t agree with you… and have a conversation with you. But having an argument about it? Not really my style.

    On this, I happen to agree with you.

  6. Kev says:

    SM69 is Lorene Amet, who works for http://www.autismtrust.org.uk/ in the UK. I’m not surprised she was offended by this post. ATT pushes (amongst other things) chelation for kids. You can read more about Lorene Amet and the industry she is part of here.

    • Thank you for that Kev. I’ve read through the linked piece, and I better understand her.. “passion” now. (Though it seems better called “fanaticism.”) When someone is making a money off parents, with unproven and largely anecdotal treatments, they’ve got a lot to lose when people start doing their research and looking into the consequences of those treatments.

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