The Big Picture: July 22, 2021 Public Comment to the IACC
My name is Jill Escher, I’m president of NCSA, I’m also a research philanthropist, an autism housing provider, and the mother of two children with nonverbal autism.
I want to talk about the big picture. The IACC has been around for 2 decades, so I think it’s fair to ask, “Are we better off today than we were 20 years ago?”
The answer is unfortunately no, we are most definitely not better off today.
While some minor battles have been won, we are losing the war, and losing it big.
With modest exceptions, we are still nowhere close to identifying causes of autism, nor any meaningful routes for preventing this often devastating disorder of brain development.
Autism rates continue to skyrocket. Over 20 years, California’s DDS has seen a 10-fold increase in moderate-severe autism. In New Jersey, autism affects 5% of 8 year-old boys.
Meanwhile, some advocates still promote the absurd idea that the increase is not real, while others continue to flog the dangerous, debunked theory that vaccines cause autism. And much of mainstream science is stuck in a rut of repetitive or irrelevant research that will not help a single autistic person alive today.
We have made almost no progress with respect to treatment. The meagre toolbox we have today is largely the same as 20 years ago.
Then of course, the massive elephant in the room, which is the growing adult autism crisis.
We have fewer housing options. More and more adults are living with aging parents, unable to access brick-and-mortar or the supports necessary for their complex needs.
We have fewer employment opportunities. Non-competitive employment — the only viable option for a vast expanse of the spectrum — is being stripped away, and replaced with… nothing.
As for Medicaid home and community funding, that system serves only a slice of our disabled adults. Even if you have the good fortune to escape a years-long waitlist, good luck finding a provider. They pick and choose — and they don’t choose our severe adults.
If you’re a family living in crisis, with an aggressive, destructive or self-injurious loved one, you’re on your own. A nearly nonexistent crisis care system means your child will likely land in an emergency room, drugged and restrained, with nowhere to go.
Finally, what will happen to this burgeoning population of severely disabled adults after their parents die? This is a major public policy question no one can answer, because we still have no plan. We are not even talking about a plan.
The disparities in autism are growing, and punishing the severely affected.
Ignore the crusade to trivialize autism. Focus instead on what Congress directed you to do: further federal efforts to find causes, prevention, treatment, and lifespan services.
Thank you.