The USAAA conference, Treating Autism as a Medical Disorder; Bringing Biomedical Treatments and Behavioral & Developmental Therapies Together, starts today in Boulder Colorado. When I first commented on the conference and the press release announcing that a major autism study would be disclosed I received a comment from a Neurodiversity blogger who asked whether I was now embracing "quackery". For the record, I have never accepted, to date, the evidence of a vaccine/thimerosal link. In my home province here in New Brunswick I have received criticism in the past for commenting on the shortfalls in the vaccine theories and for speaking against "conferences" at which unproven biomedical products are sold. My son does not receive any biomedical treatment, no medication, no dietary supplement. He does not receive HBOT (Hyperbaric Oxygen Treatment) or stem cell treatment. Conor receives Applied Behavior Analysis, ABA, intervention because, despite the fervent ideological opposition of the Neurodiversity movement, there are hundreds of studies demonstrating gains for autistic children receiving ABA intervention.I have not embraced, to use the term offered by the ND blogger, biomedical treatments for my son's autism disorder. That does not prevent me though from keeping an open mind about biomedical, or any other autism interventions, if further studies provide evidence of their effectiveness. By open mind I do not mean an unquestioning, accepting, approach. I will try to take an open minded but disciplined approach to new studies and new evidence concerning autism treatments and interventions. If new studies and evidence are presented showing that interventions are effective then I will be prepared to examine the evidence, with the assistance of professionals in the field, and I will be prepared to change my personal assessment of a particular autism intervention.
Two interventions which have shown some promise as autism interventions are stem cell therapy and HBOT (Hyperbaric Oxygen Treatment). There is also anecdotal evidence of parents who swear by chelation as an effective autism treatment. None of the evidence of these interventions rises to the level, in my mind, of evidence based effective interventions for autism - to date. I do not know what intervention will be the subject of the study to be announced today. My guess was that the report will focus on HBOT but if you know my record on predicting the outcome of sporting events (I picked France over Italy in the World Cup, Ottawa over Anaheim in the Stanley Cup) you should probably assume that it will NOT be about HBOT. Regardless of what intervention turns out to be the subject of the study I intend to approach the announcement and the results of the study with an open but disciplined mind. Not out of desperation as some of the ND ideologues like to chant about parents seeking new treatments for their children's autism; but because it makes no sense to make a final decision about potentially helpful new treatments and to refuse to consider new evidence. It just does not make sense to close your mind forever on such important issues.
By hundreds of studies, you mean one (unsuccessful) randomized trial and 99 or so non-randomized trials with varying degrees of outcome, right?
ReplyDeleteIs it really "hundreds" of controlled trials? I think you're exagerating.
My position is that in autism a non-randomized trial is practically worthless and often misleading. If possible a trial should be placebo-controlled and double-blind. That's the lesson from Secretin, and it doesn't matter if there are thousands or millions of studies if none of them follow a methodology that is interpretable.
Sorry joseph but you are wrong on all counts. Your view that the hundreds of studies demonstrating gains for autistic children are practically worthless is inconsistent with evidence based standards of medicine and education, and with state, national and professional associations. Not to mention the thousands of parents who seek ABA for their autistic children or have their children enrolled in ABA programs. Everyone is wrong except joseph and the Neurodiversity movement? I don't think so joe.
ReplyDeleteThe lesson from Secretin? You just jumped off the Empire State Bldg with that comparison joseph. Nothing remotely comparable between the large body of evidence supporting ABA and Secretin.
Thank you for posting a brave piece.
ReplyDeletei see it as an olive branch between two schools of thought as it is clear that some treatments work for some kids.
I have a boy who has benefited hugely from dietary and non invasive biomed treatment, We have good data to show the benefits.
I laugh when i hear that treatments are not proved and peer reviewed, the fact is that parents are doing this in large and small groups through out the world. i can ask a question on a group about a specific treatment or behavioural issue and within an hour, I have good advice based on experience from several real parents. Then I am free to make the choice for my child.
I feel that the parrents are actually a couple of years ahead of medicine on the treatment of health issues that autistic children face.
ND make a lot of noise on the internet about advocacy and rights, but from my point of view do little to address the world wide shortfalls in both education and health care for very autistic kids. but instead pursue quack doctors or tragic stories of abuse,or there own self promotion and fame.
Kev could be a real force for good if he would campaign for education and heath care in the UK but instead he chases Dr Wakefield , its such a waste.
again I applaud you Harold, I speak for all the proud parents who are just trying to do the best for their kids (without harm).
Did my last message get lost?
ReplyDeleteThe older post has no comment past mine. I hope I am not the ND blogger you mean, Mr. Doherty. I DO think the two proposed treatments ARE quackery, but I do not think this is your fault. And I didn't even mention the word "quackery".
ReplyDeleteYour June 26 post reported a study on a possible treatment of fragile X that ISN'T quackery. It is published in a high-quality journal. It includes appropriate controls. And, most importantly, it is tested on an animal model before a human study is even conceived. It is difficult to say whether something good for people with fragile X will come out of it. I hope they will eventually have some biochemical means to make their life easier, as people with diabetes have their insulin and people with PKU have their diet. But even if this animal study fails to bring useful results for human patients, it is still a good study.
By contrast, quacks rushing to treat autistic children don't even attempt to test the efficacy and safety of their treatments on an animal model. They are eager to experiment directly on vulnerable humans. This makes me sick.