Curing autism doesn’t help today’s autism families

Brookline TAB, January 11, 2010

“What does your doctor say?” This was my mother’s constant response, whenever I’d complain about not knowing how to educate or even help my autistic son, Nat. I knew she was going to ask it, but still I’d complain to her, because I had nowhere else to go for help. Even with a school system as excellent as Brookline’s, there was very little expertise or help available to us.

This was nearly 18 years ago, when Nat was 3 and newly diagnosed with autism. Back then, the statistics on autism frequently gave families a 2 in 10,000 chance of having an autistic child. Today, that incidence has risen to around 1 in 100. And yet, I don’t know if there are many parents out there now who feel any more certain about getting help than I did. That is why the U.S. Senate’s version of the health care bill needs another look: In terms of autism help, it has missed the mark.

The nature of help is multifaceted, and that’s what makes it such a hard thing to pin down. Autism families need help in terms of school supports, knowing which approaches and therapies to pursue. They need help paying for the outrageously expensive home-based therapies currently not covered by insurance companies, and not widely offered in Brookline schools. They need help keeping their families together, keeping themselves whole. They need help knowing what to do first, and what to do later.

In the history of the American autism awareness movement, which is just a little younger than Nat, the emphasis has been on making public the negative aspects of life with autism. The fundraising for research focuses on the horrors families face or the losses they have encountered. So given that environment, it makes sense that the public response has been to wipe it out. The latest comprehensive health care bill just out of the Senate includes language that would allocate resources devoted to finding a cure for autism. In effect, the government is legislating the form autism help should take.

That the Senate’s version of the health care bill emphasizes curative research is not, in itself, a bad thing. But our federal policymakers do not seem to realize that to take aim so exclusively at curing autism is to put their eggs in one basket — another popular refrain of my mother’s. What’s more, it may even be a political cop out. It’s far more exciting to give speeches about curing a scourge than to talk about how much funding is needed to support a low-functioning autistic adult on the job, or pay for educational therapies for autistic school children.

How many Americans — or legislators — realize that gearing precious research and funding sources towards ending autism is a political choice, rather than a necessity? Our state is already struggling to pay for public education and adult services for severely autistic adults. Brookline is grasping for ways to make ends meet in the town budget, in terms of education. Unfortunately, Brookline still falls a bit short of the state’s regulations for affordable housing for the disabled. If so much federal money and energy is now to go to curing autism, rather than supporting our current autistic population, what will be left for those adult autistics citizens in need of services and housing, Brookline autistics included?

The autism community is deeply divided on the issues of priorities in autism care, so it is no surprise that the general public is even more in the dark about what to do. Those who believe that autism is not genetic, but is instead caused by an environmental injury of some sort (mercury or vaccines, to name a couple) feel that to focus on anything but undoing this damage is irresponsible. Those who believe that autism is a neurological disorder that is incurable would likely rather focus on improving the symptoms of autism.

Most parents are somewhere in between, and that is the problem. They want help that comes in many forms: educational help for their child; independent living help in adulthood; respite help to keep their family together in the midst of great challenge; and yes, even the help of no longer having to deal with autism at all. But all of these forms of help cost money, and most demand research. All of these forms require a piece of the public’s limited attention span. There are currently 1 out of 100 people in the country diagnosed with autism, but how many of them will benefit from all that federal money going towards cure research? How many more would benefit from school support, job training, job supports, and some level of assisted living — even here in relatively well-resourced Brookline?

Perhaps it is time for our country to plan first, for all of the autism populations that need help — whether unborn, in childhood or fully grown — and to allocate sparse resources fairly and in ways that will help real autistic people now. Autism policymakers must stop contemplating their navels, as my mother would say, and get to real work.