Interagency Autism Coordinating Committee (IACC): The Big Picture

Today’s IACC public comment by National Council on Severe Autism (NCSA) president and my good friend Jill Escher is entitled: The Big Picture

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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.

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 as much as I support it, 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’re not even talking about a plan.

The disparities in autism are growing, and punishing those who are 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.

2 responses to “Interagency Autism Coordinating Committee (IACC): The Big Picture

  1. The IACC only exists for window dressing. They don’t do anything to influence congress or NIMH. They are a complete waste of taxpayer money and if Jill Escher or anyone else believes the public comments they make to them aren’t a waste of time, I suspect they will be disappointed.

    Like

    • We all agree Jonathan. For those of us that have had a personal stake, the IACC has been a source of frustration. So much more could have been done. In my mind, it is nothing less than a criminal act.

      Like

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