There is only one way to make progress: our megaphones.
By Jill Escher
Over the past three decades an autism tsunami has steadily swept over America. In the 1980s autism, under any label, was barely a blip in schools and disability programs, but now we head inexorably toward 3% of all our children having this serious disorder of brain development. In New Jersey as of 2018, 5% of all boys were found to be autistic, what one researcher chillingly called a “leading indicator” for nationwide trends. In California the number of residents with developmental disability-level autism has surged 40-fold between 1980 and today.
One would think that such an onslaught of serious disability would feature prominently in policy discourse, maybe even make an appearance or two in presidential debates, given the immeasurable hardships faced by families, and of course the consensus that our country is woefully unprepared to address lifespan needs.
But no. Once again Election 2020, as with campaigns before it, seemed to banish autism as a topic of importance. This was true even though a Democratic presidential candidate, Andrew Yang, had an autistic son, and even though the autism surge was exerting unprecedented pressures on schools and social services.
While acknowledging the dire reality of the U.S. autism surge does not exactly mean political suicide, the pressures on political and administrative leaders to remain mum seem to be considerable. First, no responsible leader wants to be seen as fueling anti-vaccine sentiment while a vocal anti-science minority continues to flog the non-existent connection between vaccines and autism. The Covid pandemic only heightens the need to bolster confidence in vaccines. Second, no one understands what is fueling the increase, so it becomes more convenient to dodge the issue than grapple with the overwhelming complexity and mystery, even with data as subtle as a nuclear explosion. And third is the pressure from activists to see the problem not as an alarming increase of tangled neurobiology but rather as evils of an “ableist” society aiming to “institutionalize” autistic people (this is pure scaremongering myth—no state wants anything to do with increasing the ranks of the institutionalized).
So with a new administration on the horizon, will American government finally roll up its sleeves and take the autism crisis seriously? Is there hope for our families? Or will we be paralyzed by uncertainties and feel-good fairytales?
I don’t know. Certainly many are concerned that the Biden-Harris administration will kowtow to the Disability Industrial Complex — the entrenched group of Beltway advocates who seem to tirelessly crusade against policies critical for the severe autism community. This includes their goals to abolish non-competitive employment for the severely disabled, de-fund viable residential options for those with severe behavioral and functional impairments, and weaken the critical legal protection of guardianship.
But this I do know. The only way to make a difference is this: SPEAK UP.
While several of our nation’s leading autism advocacy organizations have shriveled into an obsequious silence on urgent issues facing autism families, it has never been more important to TELL YOUR TRUE STORY. We will never be able to shape national policies if we remain silenced and sidelined.
Over the next year, NCSA’s new Policy Committee will be asking our followers to take some time to simply write to their representatives, and/or write to the media. The point is not to “shame” ourselves or our children, of course, but simply to shine a light on the difficult realities we face, and to illuminate the opportunities for urgently needed reforms. There can be no progress if our stories, our realities remain hidden.
Jill Escher is the President of the National Council on Severe Autism.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.