On Trial: Vaccines and ABA
As predicted, the vaccine court hearings have been the center of news about autism this week, and will for the next two weeks of the hearings (and beyond). The June 18th LA Times provides an overview of studies about a vaccine-autism link that begins with Dr. Andrew Wakefield’s 1998 Lancet study. Sharyl Atkinson on CBS News discusses Why the Debate Rages. Here is the seventh of her seven reasons for why the debate still continues:
7. Those who say autism and ADD are not linked to vaccines do not know what is causing the epidemics.
• The most frightening part of the autism/ADD epidemics is that if, indeed, they’re unrelated to vaccinations, that our best, brightest public health experts still have no idea what is causing it. Excluding ADD, one out of every 150 American children are now being diagnosed with autism.
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Atkinson presumes “epidemics” of both autism and ADD: How did ADD, and ADD as an “epidemic,” enter the “debate”? Atkinson terms these so-called “epidemics” to be “frightening,” not only in and of themselves but because “our best, brightest public health experts still have no idea what is causing it.” It would be helpful to include more mention here of the theory that the rise in the prevalence rate of autism is due to better diagnosis—-that we are diagnosing more children with autism because we have a better understanding of it. And it is not a bit presumptuous of us to think that we can find the cause of autism?
The vaccine court hearings, and the theories that vaccines or something in vaccines causes autism, focus on some event in the past, on something that is an “environmental trigger” for autism, on some event that caused a “normal” child to become autistic. More than a few families with autistic children that I (if I may speak anecdotally) know are mostly interested in the more mundane business of getting through the days (or the next few hours till it is time for bed), of considering the best educational placement for a child, of looking ahead to a future that (I for one hope) will include a job and, eventually, an independent living situation. How can we best teach autistic children to be prepared for all this?
Researchers at McMaster University are undertaking a study to find out other types of teaching and therapies that might help children who do not respond to Intensive Behavioral Intervention (IBI) which uses Applied Behavior Analysis (ABA). The alternative the researchers plan to investigate still uses “behavioral skills training” but focuses on teaching functional, day-to-day living skills: I would rather be curious about researchers investigating other teaching methods besides behavioral ones. The June 14th First Science News reports:
IBI is a cognitive-based program, where intensive programming focuses on improving children’s developmental outcomes by teaching thinking and language skills such as to understand instructions, to express themselves, to learn adaptive behaviour, social and play skills and to change their behaviours.
If the functional skills training based on ABA proves beneficial for some of the children with complex autism who don’t respond to IBI, not only will it be a treatment option in the best interests of the children, but it could mean more spots will become available in the IBI program for those more likely to benefit.
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Also on ABA: Michelle Dawson reviews two ABA studies presented at IMFAR (which was the International Meeting for Autism Research that met in May); her careful analysis of the experimental design of both studies gives me much to think about: Research studies about autistic persons need to be designed with scientific and ethical standards to “protect and benefit” autistic persons, over and above anyone else.
And, my article on ABA and the Older Child appears in this month’s edition of Meeting Point, which is the newsletter for the Lovaas Agency, who oversees my son’s ABA home program. ABA, and Lovaas himself, come under criticism—in part because ABA has become so pervasive, in part because of an emphasis on using ABA to make a child “indistinguishable” and to “recover” a child from autism, in part because ABA programs see autistic behaviors and autism as something to “cure” a child from, in no small part because of the use of aversives in the past (and still in the present). I think this criticism is rightfully deserved, and can only help to improve educational programs for autistic children. Everyday there are more and more people out there who claim expertise in autism and parents have to be more careful than ever about who they trust, and pay, to oversee their child’s education and other programs and treatments.
ABA has so far been the best method to teach my son, but only when everything has been individually developed and structured around Charlie’s particular learning needs. ABA, and how we teach autistic children, also need to have their day in court. There is good ABA and a lot of poorly executed and delivered ABA, and Charlie has been taught with both (much less effectively with the latter). ABA has helped Charlie to learn to ride a bike and play the piano; poorly delivered ABA in a former school placement led to an increase in some very difficult behaviors. I am hopeful for the results of the McMaster research on other teaching approaches for autistic children; I believe the inclusion of autistic persons’ perspectives in developing educational protocols is essential and is only to Charlie’s benefit—from their experiences I have learned the importance, and indeed the necessity, of attending to Charlie’s sensory needs and how doing so enhances his ability to focus and learn.
I was asked to write my article for Meeting Point after I wrote to the editor and asked why more stories of older children (and in particular, of children who, like Charlie, are not mainstreamed and who are still doing ABA) were not included on their website. This is the final paragraph of ABA and the Older Child:
Some of the claims—of recovery, of cure—that have been made for ABA can give parents false hopes. We were often told that there was a “brief window” of time to have Charlie do a lot of therapy in the hope that we would be so “lucky” that he might become “indistinguishable.” Such claims are a disservice to what ABA can do: Provide a teaching methodology, and a powerful one, that enables autistic students to learn and thrive and lead good lives. The good therapist—the good teacher—knows when to adapt, when to be open-minded, especially in the face of a boy who is growing up and changing every day; who is growing into his own. Older children can benefit and need ABA—need good teaching—just as much as young children. It is never too late to learn, never, ever, too late to give kids like Charlie a chance.
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Debates about vaccines and about the causes of autism more generally will not cease to rage. In the meantime, our children need to be taught now, and in ways that take into account what it is to be autistic, and always their dignity and intelligence.
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POSTED IN: Cause, Charlisms, Education, Epidemic, Health, Legal Issues, Psychology, Treatment, Vaccines
2 opinions for On Trial: Vaccines and ABA
Leila
Jun 16, 2007 at 11:03 am
Your article for Meeting Point was excellent, Kristina.
Truths About Autism
Jun 17, 2007 at 3:02 pm
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