Autism Policy Reform Coalition: Be a Part of the Solution

AUTISM: The latest numbers from the Centers for Disease Control (CDC) say that 1 in 68 12-year-olds is on the autism spectrum. Given that those numbers represent a 30% increase from just two years ago, with no changes in diagnostic criteria since 1994 and no “official” identification of risk factors that could lead to prevention, and given that similar rises have occurred with every recent count, chances are very good that the numbers are already 30% higher for today’s 10-year-olds (1 in 52, which is close to the overall estimate for childhood incidence in the United States from a 2013 CDC study), and 30% higher than that for today’s 8-year-olds (1 in 40), and . . . well, you get the picture.

Despite all the pooh-poohing from folks who insist that we’re over-diagnosing children these days, autism spectrum disorder presents real problems for every one of those children and their families that require real solutions. Unfortunately, United States federal policy until recently has been to deny there was a problem at all. When that finally stopped working, Congress passed the Combating Autism Act (CAA) in 2006, authorizing the Interagency Autism Coordinating Committee (IACC). The IACC, chaired by Thomas Insel, Director of the National Institute for Mental Health, met for the first time in 2007.

The CAA authorized the IACC for five years. When that five-year period was winding down, it was not clear what good the IACC had accomplished in their five-year tenure. Many people in this community have complained that those five years made no difference to the lives of people with autism or their families. Five senators, Coburn, Menendez, DeMint, R. Johnson, and Lee, voted to reauthorize the CAA, but requested that the U.S. Government Accountability Office (GAO) review and examine federal autism programs with the goal of analyzing how well the IACC had fulfilled its function over the succeeding five years. So, when it came time to reauthorize in September of 2014, there would be hard data on the committee’s effectiveness (or lack thereof), which should go a long way toward improving the law.

The GAO review came out in November 2013 and indicated that up to 84% of the research being done in the field of autism is duplicative. While scientific research does have to be repeatable in order to be considered valid – and the only way to do that is to do research that is at least somewhat duplicative in scope – the federally sanctioned research that has been done so far has failed to improve the lives of people with autism or their families in any significant way.

“Autism by the Numbers”; autismpolicy.org

According to GAO, “From fiscal years 2008 through 2012, 12 federal agencies awarded at least $1.4 billion to support autism research and other autism-related activities.” That’s a billion and a half dollars spent in five years, and what has the autism community gained from it?

Has that billion and a half dollars prevented so much as a single case of autism? Not bloody likely given that 30% increase, is it?

Has it established programs to educate police departments in handling suspects and detainees with autism?

Has it established housing and job programs to handle the huge wave of adults with autism that have begun “aging out” of their childhood supports?

Has it come up with any sort of “best practices” on treatment of the medical conditions that so frequently accompany an autism diagnosis, such as GI disease, seizure disorders, and mitochondrial dysfunction?

No, no, no, and hell no!

With regard to treatment, Committee Chair Tom Insel has said that up to 10% of children with autism can lose their diagnoses, possibly basing that on a recent study that showed “Some children who are accurately diagnosed in early childhood with autism lose the symptoms and the diagnosis as they grow older.” Of course, many of us have been saying something similar – loudly – for years; we’re just surprised they’ve finally stopped denying it. The study authors don’t make it clear, but those children didn’t just “grow out it.” They lost their diagnoses because their parents dedicated a good deal of hard work and brainpower to figuring out what caused the condition in the first place and finding ways to reverse the damage. Those children will grow up to be productive members of our society. To put it crudely: They will be more likely to be paying taxes than receiving Social Security and Medicare.

Doesn’t it seem that it would be cost-effective for the country as a whole (which will be tremendously financially burdened by a rising percentage of adults, especially men, who are unable to hold gainful employment) to figure out how to leverage the experience of those who have successfully reversed autism? Let’s put it even more crudely: If autism hasn’t affected you by now, it will and soon. In fact, it will cost you for the duration of your life as a taxpayer.

The IACC was created with two basic functions: The first is coordinating autism policy across federal agencies. There are government members on the committee, other than those from the CDC and the National Institutes of Health, from the Department of Defense, the Department of Education and the National Science Foundation. Like the name says, the committee is supposed to enable coordination of federal autism policy. The second function is to gather information from experts and “stakeholders” to direct autism research appropriately, providing a “strategic plan” for national autism research.

We here at Thinking Moms’ Revolution think that the IACC has utterly failed at both functions. And actually, in its current structure, it would be something of a miracle if it didn’t. The IACC falls under the Department of Health and Human Services. Therefore, it has no authority to call the shots on autism policy in other departments, such as the Department of Education or the Department of Labor. The IACC is an advisory committee, meaning that its job is to suggest policy.

The IACC advises the Secretary of Health and Human Services, currently Kathleen Sebelius, on autism policy. The Secretary is free to act on that advice or not. On September 7, 2011, the IACC sent Secretary Sebelius a letter containing a number of suggestions on the unnecessary use of seclusion and restraint on people with autism, a subject that many would argue is of grave importance given the fact that it can – and does – kill. Secretary Sebelius never responded. There are no consequences for her  failure to act, because there is no mechanism for accountability. As Bob Wright, co-founder of Autism Speaks, pointed out at the Oversight Committee’s hearing on the Federal Response to Autism, no one wakes up every day with the responsibility of “fixing” or “solving” autism.

“Autism by the Numbers”; autismpolicy.org

When it comes to researching autism, there have been a number of approaches over the years. Many people have believed autism to be a genetic disorder and felt that genetic research would provide some needed answers. Presumably such research would lead to “genetic counseling” for people who were carriers of the “autism gene,” possibly encouraging elective abortion of pregnancies that would be likely to produce children with autism. For obvious reasons, many people – especially adults with autism who are self-advocates – find that idea offensive.

Others are convinced that, while genes play a role, research into environmental triggers would be much more likely to lead to useful information that could enhance the lives of those with autism and their families. It may also lead to information that will enable prevention of the disorder in the first place. Given that autism is estimated to cost up to $3.2 million per child for lifetime treatment and care, not to mention the tremendous human cost involved in taking care of profoundly affected children, prevention is a very important goal for research.

The strategic plan divides research objectives into several categories and assigns a desired percentage. As the GAO report shows, contrary to the breakdown in the strategic plan, the vast majority of research dollars have gone into genetic research, and all that expensive genetic research has yielded nothing useful whatsoever.

I remember a while back one study being trumpeted in all the mainstream media as an “important” finding. The finding? That there was a gene that was slightly more prevalent (and I do mean slightly) in the autism community than in the general population. That same scenario has been repeated time and time again. All genetic research has done for us is to tell us that there is no “autism gene”; there are something like 200 genes that have been identified as slightly more prevalent in the autism community than the general population. (In my head, I hear the line in Monty Python and the Holy Grail, “And there was great rejoicing,” followed by an anemic, “Yay.”)

A recent Swedish study made it clear that approximately 50% of autism has to be caused by environmental factors that have been largely ignored by the scientific community. Despite all the studies you’ve heard about recently, older fathers, overweight mothers, and living near freeways can only account (by the authors’ own math) for tiny percentages of autism cases. Clearly, disovering how environmental factors act on people with a susceptibility is key to prevention, which, shockingly enough, is also something we’ve been saying for years. (Noticing a pattern here?)

Even the members of the committee themselves are aware of the futility of their efforts. This video was taken at the meeting that took place on July 9, 2013. This excerpt is from late in the day, approximately 5:00. As you can see, a number of the members express their frustration at the inability to get anything accomplished.  (Skip to 3:19.)

Because the IACC is dysfunctional and cannot accomplish what needs to be done in the area of federal autism policy, the Thinking Moms’ Revolution has joined forces with a coalition of like-minded autism organizations to form the Autism Policy Reform Coalition (APRC). APRC’s position is that no bill is better than a bad bill, i.e., one that spends a great deal of taxpayer money without a comparable effect on the lives of people with autism and their families. Our goal is to fix the CAA by breaking up the two main functions of the IACC into two pieces that are placed where they most make sense and can actually accomplish something.

It is not well known, but President Barack Obama put together a position paper on autism spectrum disorders back when he was running for president in 2008. That paper promised that

“Obama will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, Obama will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will work also [sic] be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and collaboration among federal, state, and local agencies.”

The APRC believes that a similar model to that described above would be the best possible way to make federal autism policy accountable and effective. We request that an Office of National Autism Policy be established, with a Director who is appointed by the President, directly accountable to Congress for results, and advised by a committee comprised substantially of stakeholders who would drive policy. National autism policy needs to be centralized and streamlined in order to effect change.

Many people say that Congress won’t consider such a thing because “other diseases” don’t get the same treatment, but “other diseases” don’t affect 2% of the country’s 10-year-olds and are not associated with “bizarre” behavior patterns that make interacting with people in law enforcement, educational settings, group housing, and the work place problematic.

With clear goals in sight, the APRC hired Craig Snyder, who was very invested in autism policy while working for Autism Speaks back in 2006, when the CAA was authorized, and again in 2011, when it was reauthorized. Craig knows Washington inside and out but, what’s even better, he knows exactly what’s wrong with the CAA and IACC and why it needs to go away. In other words, he “gets us,” and he’s determined to get it right this time and produce a federal autism policy that will actually make a difference in the lives of people with autism, their families and the country as a whole. We’re very excited and energized to be working with him on this project.

To do all this, we need money, nothing like the scale of funds that Autism Speaks has at its disposal, but enough to enable us to have a website, issue press releases, travel back and forth to Washington – in short: to get the job done.  A number of individuals working hard on the coalition have pledged their own money, but we don’t yet have enough to cover all the costs involved in accomplishing our goals. We know that the autism community as a whole is generally running on fumes, with good reason (see that $3.2 million number above), but even broke people can often come up with $10 for something they really believe in. We’re asking you to visit the APRC website and consider joining “the team” with a $10 donation (or more if that’s comfortable for you). The more people supporting autism policy reform – with their vision and action, as well as money – the better.

With love and enthusiasm,

~ Professor

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