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December was a dark month. On the 16th, 22-year-old Luke Renner jumped from a cruise ship because he wanted to go swimming. On December 26th, 28-year-old Robert Nicholson was found frozen, two weeks after wandering away from his day program.
I, like so many parents of severely autistic children, had what can only be called a there-but-for-the-grace-of-God reaction. My son Jonah, now 20, suffers from the same lack of safety awareness as Renner and Nicholson—his eloping was only stopped when we installed key locks on every window and code locks on every exterior door, requiring us to input a passcode just to leave the house. And, most heart-stoppingly, on April 12, 2014, Jonah tried to jump off a cruise ship. After pointing out to the open ocean and saying “swimming” several times (to which we responded, of course, “NO swimming. See this pool? When the ship gets out to sea, they will fill it, and you can swim there”) he suddenly bolted towards the railing. His father grabbed him with a flying tackle to the knees just in time.
You won’t find these stories featured on The Good Doctor or celebrated by Disability Rights organizations. Most autism narratives cherry pick the savants, the computer geeks, and the quirky kids – excluding the Lukes, the Roberts, the Jonahs. Fortunately, families like mine have a critical new ally in our fight to create authentic awareness, honest acceptance, improved national policy, and, ultimately, the best possible lives for the growing population of Americans disabled by autism: the National Council on Severe Autism (NCSA).
I am so proud to be one of the founding members of this organization, alongside prominent advocates from across the country: Jill Escher (Autism Society of San Francisco), Feda Almaliti, Alison Singer (Autism Science Foundation), Judith Ursitti (Autism Speaks), Lisa Parles, Frank Campagna (aka the “Autism Daddy”), Gloria Satriale and Matthew Siegel. Our focus is the unprecedented population of mentally and functionally disabled children and adults that will require a lifetime of services and support—a population for which current policies are woefully inadequate. According to California data, the developmentally disabled adult autism population will nearly quintuple over 20 years, even as the state’s developmental services system is already described as “on the brink of collapse.” Waitlists for adult services around the country are growing. And, according to a UC Davis study, we are potentially facing a $1 trillion national price tag for autism by 2025. No amount of wishful thinking can alter the course of the tidal wave hurtling towards us.
It’s time to address this crisis with the gravitas it deserves. How will we care for this surging population, particularly as parents age and die? Where will all these autistic adults live? How can we shield them from neglect and abuse? Can we break the so-called “spectrum” into subsets in which targeted interventions and therapeutics can finally yield strong benefits? How can we ensure our limited public resources are spent most effectively and efficiently? And how do we keep a full array of lifespan options on the table?
NCSA believes in the power of truth. Without truth we can never achieve the transformations our community desperately needs. If we remain marginalized and invisible, we simply cannot be targets for needed social reform.
Together we will, as Jill said in our press release, “add a strong voice for those who cannot speak for themselves.”
