Tuesday, November 26, 2013

Who Speaks for Autism, II

Ironically, despite their enormous differences, both John Elder Robison and the leadership of Autism Speaks share a couple of legitimate concerns: insufficient funds for treatment and accommodations, as compared with funding for early detection and etiology--in what reminds me of the education establishment’s obsession with assessment at the expense of teaching.

As another autism self-advocate, Ari Ne'eman, President, Autistic Self Advocacy Network, has observed:

Of the approximately $217 million dollars that the National Institutes of Health(NIH) invested in autism research in 2010 (the most recent year for which data is available), only a meager 2.45% went towards improving the quality of services and supports available to Autistic people and our families. Only 1.5% went towards research that addresses the needs of Autistic adults. When compared to research on questions of causation, etiology and biology and diagnosis, the percentage of the autism research agenda focused on the actual needs of Autistic people in order to improve their quality of life is miniscule.
Of course, autism researchers can counter that early detection and etiology research will lead to better interventions and cures. One hears similar promises from the education establishment. Time will tell.

Autism advocates don’t necessarily have the right priorities either. Until very recently one of the top priorities of Autism Speaks was more research and action on the long-discredited vaccine theory. Then there are those who advocate indiscriminantly for potentially problematic accommodations like full inclusion or facilitated communication systems that potentially reduce the incentive to actually teach communication skills or instruct students at their instructional level.

Thinking about these tensions between autism self-advocates and autism parents, on the one hand, and autism advocates and autism researchers, on the other, has me wondering what my priorities would be if--ah, if only!--I were in charge of everything. And this has me thinking about what the most under-emphasized priorities are.

When it comes to the most challenging cases, I would say we need many more professional caregivers; more financial support and regular and extended respite care for families; and higher quality lifelong care facilities to relieve the burden from aging parents and younger siblings. No family should have to go through what Josh Greenfeld’s family, and many others, have gone through, psychologically, physically, and financially.

Therapeutically, we need more linguistically-informed language interventions that, wherever possible, go beyond the rote memorization of single words and canned phrases, and free children, as much as possible, from dependency on Alternative Augmentative Communication systems--particularly the more linguistically limited or communicatively misleading of such systems.

For higher functioning children, we need academic instruction that disentangles reading comprehension and writing challenges from math and science challenges, and also disentangles social and organizational challenges from academic challenges. We need to address bullying much more effectively than we do now, among other things allowing kids to opt out of school-based group activities and work independently. Outside of school, we need social skills groups that are willing to include kids that have behavior problems. Related to this, in addition to the full inclusion option, more school districts should offer self-contained classrooms specifically for high functioning autistic students—an option I might have chosen for J, had it existed. Post-high school, there should be an expansion of online degree programs—particularly suitable to those for whom the brick and mortar aspects of colleges are more intimidating than enriching.

One key priority that I don’t need to emphasize, because others have done so already, has to do with meaningful employment. More and more companies are now specifically seek out and harnessing the special skills of adults with autism. For all the ups and downs of research, advocacy, and educational accommodations, this particular development, for some of us in the autism community, has been one of the most promising of all.

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