The buzz about an ABC News report last week while I was busy living the super-busy, parent of multiple autistic kiddo life is still floating around the Internet, and begs for a remark – or ten. http://abcnews.go.com/GMA/video/research-suggests-parents-move-children-off-autism-24786501 The headline summarizes that “new” research appears to be science confirming it’s possible for autism to be “cured,” or at least for individuals to make such gains that upon retesting and rediaognosis, that the hallmark social, communicative and sensory dysfunction aren’t present – and therefore, individuals “move off” the spectrum.
What to think here? My W and J belong to the low-functioning camp. Speed-read down to the bottom of the transcript link where the interviewed physician cautions against over-interpreting the research to say those parents like me of lower-functioning kiddos need not use the research to suggest that they either did not work hard enough, or perhaps even did not apply the right therapies. The physician, I believe appropriately, used the report to point to the need for additional research so that science could point us toward a deeper understanding of the spectrum itself, and interventions that do work for certain subgroups.
This is such an emotionally charged domain, at least for me. My autism-related Facebook friends shared some chatter basically supporting the call for applying science to autism’s treatments, and not surprisingly often asserting their own mini-success stories about how their kids have triumphed over Whatever.
Full disclosure: those who know me know I often trip up over the Blame Game implicit in well-intentioned but undeniable I Cured Autism parental sharing. I routinely explain W and J’s progress to well intentioned friends and family with Sentence 1 explaining the latest and Sentence 2 beginning “I haven’t cured autism yet, but…..” For me, I’ll go to my grave thinking that despite everyone (really) who knows me commending me for working harder than most, my W and J still speak in several word phrases, struggle to count, self-stim as much as I’ll let them and can’t think in the abstract or in any way outside basic functioning. I did ABA, Floor Time, sensory integration therapy, auditory integration therapy, B vitamins, broccoli extract pills, a brief gluten free/casein free diet, and not a small number of meds trials. We’ve most assuredly made progress, but I measure ours in thimbles. And I’m still proud and grateful for it, and for how it has made me a better person in the process.
Yet there is simply not enough recognition of our lower functioning autism world – these individuals’ needs but also their superpowers and capabilities that make them suitable for the world of work, for the world at large, and also go greatly to be admired. Clearly our autistic superhero musicians, artists and others deserve the spotlight and accolades, and this discussion is in no way suggesting we diminish them at all. But so too, do we deserve to celebrate my W. for spray and wipe a table at the public library – or my J. for fully independently getting himself cereal after school.
On my darkest days I take heart in letters from the boys physicians and SPED director saying I was a great parent, one of the finest. Praise for heartfelt, hard-won accomplishments always makes the journey seem more tolerable. However I suspect I’m not alone in this rather mixed feeling when high-functioning autistic individuals get all the spotlight. I also suspect other low-functioning individuals’ parents could benefit from a little support like this, too.
Success comes in special packages of all shapes and sizes. It’s time we celebrate more than the pretty-looking examples of “cures” – and appreciate growth however it presents itself – on the path to always greater capability.