Autism, research and priority-setting
It’s World Autism Day.
I thought it might be worthwhile to reflect briefly on the state of research on autism and add a bit of a personal note, if you’ll indulge me. It may be that I’m much more attuned to research (and research on autism) than a typical person, but I’m amazed that every day I come across three or four new research articles, blog entries and tweets on new research being conducted into autism. Many are surrounded by controversy, and often active debate.
Rates of autism have increased over the last few decades and experts note that part of this increase is a growing awareness and capacity of physicians to diagnose autism in individuals who would have previously been labelled or diagnosed much differently. Part of the increase is also the fact that since classifying autism as a “spectrum disorder”, with a variety of possible manifestations and profiles, more people seem to “fit” somewhere on that spectrum. Finally, there are other claims that there may be environmental causes in the modern world that contribute to autism, therefore the increased rates. Current rates in Canada are reported at approximately one in 160 children diagnosed somewhere on the spectrum.
A significant amount of research being done today focuses on looking at causes of autism — both genetic and environmental. There are plenty of excellent funding opportunities for research into the causes of autism. And this kind of research is, arguably, important and worthwhile.
However, when one reflects on the current rates of autism and the number of children living with the disorder, some reflection about what funding bodies want to allocate funds toward, is important. Right now, it’s clear that the priority is research into the genetic and environmental causes of autism spectrum disorders — because, let’s be honest, that’s pretty cutting edge, headline-grabbing kind of research.
But what about those 1 in 160 children who are living with autism now?
On a daily basis, I live with autism. I have a wonderful nine-year-old daughter, who was diagnosed with autism at age 4. Because of this, I also encounter lots of children and young people living with autism, on all places on the spectrum, at her school and in her extra curricular activities. Many of these children are flourishing in excellent programs that cater to the individual needs, challenges and strengths of each unique child. But many are not. Many of these children and families aren’t able to access what are already limited services and educational opportunities, and other opportunities to seek viable innovative options for therapy and education are markedly limited. In other words, it’s difficult to find innovative therapy and educational options for kids with autism, i.e. options beyond some of the more traditionally accepted methods of approaching autism, such as Intensive Behavioural Intervention (IBI), and varied models of integration into public school systems, both of which clearly don’t work for many children on the spectrum.
(Add to that the fact that for many families, IBI programs are prohibitively expensive and the public school programs of integration, where they are in place, may be quite tenuous, restrictive and often, of highly variable quality.)
Arguably, part of the reason that these limitations in options exist has to do with a lack of funding in areas outside of research, like education and health care. However, I also think that part of the reason that these kinds of limited oppportunities for therapies, treatments and educational options for kids with autism exist is because not enough researchers are being supported and encouraged, through funding opportunties, to fill the significant gaps in knowledge in this area.
The impression that one might take away from this is that those engaged in priority-setting who get to decide how research funding should be allocated in the area of autism have assumed that since there are “options” like IBI therapy and a few spaces in public school systems for kids with autism who meet the requirements for such programs, we don’t need as much research focus on treatment and ongoing therapy as we do on finding that one factor or combination of factors that cause autism. I think that the 1 in 160 kids and their families living with autism today might well disagree.
Research Ethics Blog 
My students, in ECE, know that Autism is a growth industry, and I’ve heard that from others. They also know that I’m high functioning autistic, which opens the dialogue in terms of the entire life of someone with ASDs. I wonder if parents, teachers and researchers will develop more sophisticated therapies over time. I was in the Bloorview snozelen room yesterday, and noticed a number of potential improvements that I’d like to work on. Imagine open source autism tools! 🙂But this is the research ethics blog… with autism being a growth industry, I wonder about the swath of interventions and cures that will be cropping up, ostensibly for the child, but more likely to increase socialization of the child in opposition to what may be a non-standard but neurotypically reasonable life. That’s something that still haunts me.IMHO, the core of the issue, aside from profound autism, is the lack of neurodiversity and the standardizations of expectations that have become the norm since we institutionalized learning (from Arnold, Dewey, Montessory, et al.) that shuns uniqueness in being and skill set, replacing it with the corporate skill set.Strangely enough, I think that the positive pathways for ASD will come from autistics themselves as they grow, learn more about themselves, and advocate. I see this happening already as orgs like http://www.wrongplanet.net challenges http://www.autismspeaks.org/And I can imagine social networking technologies will be the medium. But that’s just from an aspie who used technology to build a place for himself in the world, and sees others doing it as well.