On May 3, 2016, Autism Society of America (a group with whom I have good relations and strongly support), issued a public statement to clarify that two blog pieces that I drafted do not represent the positions of ASA.
One blog post, an opinion piece called "The Federal Government's Quiet War Against Adults with Autism" was published on this website in April 2016. The other piece, a book review called "NeuroTribes: One Step Forward, Two Steps Back for Autism" was published on the Escher Fund for Autism's science education website in March 2016.
That ASA would take the time and effort to stress to the autism community "that the writings of this person are not the positions of the Autism Society" is puzzling and inappropriate. Let me explain.
With respect to the HCBS blog, I addressed policy matters of immense urgency to the autism community, matters that other autism organizations have, to be blunt, done a poor job of bringing to light. ASA national has chosen not to take a stance on the new HCBS regulations, which could profoundly limit lifespan options for a sizeable portion of the burgeoning adult autism population. Rather, ASA leadership has expressly told me that they see it as a state-by-state issue at this point. In our state of California with its extremely large autism population, the stakes are extremely high, so SFASA has had no trouble speaking out repeatedly in defense of maximizing options for adults with autism.
The HCBS blog was also, as explicitly noted twice on the blog page, a personal opinion piece. It said directly, "The foregoing is her personal opinion based on the author’s two years watching the HCBS issue unfold, and it does not necessarily reflect the views of any autism organization with which she is affiliated." ASA's fear that my words could be construed as their words is baseless.
I also must strenuously object to ASA's characterizing my writing as somehow pushing for limits on choices for adults with autism. To the contrary, I strongly champion maximizing person-driven choices for all those with autism, I/DD, and developmental disabilities. As far as community integration is concerned not only am I a wild proponent of it, I personally invest huge sums of time and money in creating community-based housing for adults with developmental disabilities, something that is almost impossibly difficult to do here in the uber-expensive San Francisco Bay Area. I am always completely delighted when my properties can serve an adult with a developmental disability and I can play a role in boosting his or her independence. We need many, many more businesses like mine to flourish and provide these opportunities.
Based on its statement, ASA seems most concerned with my assertion concerning the motivations behind the federal government's issuance of new HCBS rules that threaten to deem congregate settings "institutional" in nature and therefore ineligible for funding. I believe the motivations behind this rule change are financial in nature, as I explain in the blog post. If ASA thinks money has nothing to do with it, then that's rather surprising.
ASA says, "We remain optimistic that in the end, the federal and state governments will achieve what is best for each individual on the spectrum." Um, maybe ASA and I are living in completely different universes here. We as a nation are facing a colossal crisis with respect to the long-term care of the dramatically surging population of adults disabled by autism. In California alone, the population of adults with severe forms of autism will quadruple in 20 years. Yet our state has no plans for increasing supported housing for them, our group homes are closing, our day programs have been faltering with systemically insufficient funding for direct service staff. And this crisis will be four-fold worse before long. And it's far more acute in other states, where autistic adults languish on waiting lists for decades before they can receive services and housing. Unlike ASA, I have pretty much zero confidence that our federal and state governments are working to achieve what's best for each individual on the spectrum. Autism families around the country are panicked about their children's futures, and rightfully so.
With respect to the review of Steve Silberman's book NeuroTribes, as I said, it was written for another blog not associated with Autism Society. ASA was unhappy, however, that the signature at the bottom read, "Jill Escher is an autism research philanthropist with the Escher Fund for Autism, a housing provider to adults with developmental disabilities, president of Autism Society San Francisco Bay Area, and the mother of two children with severe, nonverbal forms of autism. Learn more at jillescher.com." Perhaps I should have omitted my role at SFASA in the author blurb? It was just a book review, and hardly seems like a cause for a public statement on the ASA website.
Troublingly, ASA not only takes issue with my review without saying why, but states, "[W]e respect Mr. Silberman’s views." Okay, this is clearly another "we are in a different universe" phenomenon. The core thesis of NeuroTribes is that autism rates have not truly increased over the decades, but that the increasing prevalence is entirely an artifact of greater awareness, improved case finding, and broadened diagnostics. I find Silberman's assertions absurd, dangerous and worthy of scorn. That Autism Society of America would (apparently) respect his view that there's been no true increase in autism should be of immense concern to the autism community. If ASA disagrees with his core thesis, I would welcome that clarification.
The last thing our autism community needs is a sense of self-censorship about the grave and pressing issues facing the autism community, now and into the future. We need leaders who can translate complex policy matters in ways that ordinary families can understand. We need to speak the truth when a best-selling author dismisses any true increase in autism. I encourage all advocates to speak out on all issues they believe are important, and not feel muzzled by others. Please feel free to contact me with any questions or concerns at [email protected].
Autism Society San Francisco Bay Area