What Have We Done for the Autism Community?

What have we done for our community?  Angry parents direct that question at the IACC, the CDC, NIH and Autism Speaks every day.  They say we’ve spent hundreds of millions in research, and talked about all our great accomplishments in research, yet the lives of the autistic people around them are not one bit better.  How come?

I’m beginning my seventh year as an autism advocate – whatever that means – and one thing that’s clear is that the dissatisfaction expressed by members of our community is just getting louder.  The inescapable conclusion is that the organizations that purport to be here to help are not delivering whatever it is we want or need.

I think the answer lies in the history of two organizations.  Autism Speaks was chartered to use science to find a cure for autism; which the founders saw as a terrible disability.  The IACC was formed under the Combating Autism Act of 2006, to advise CDC, NIH, and others.  The very name CAA implies an epic battle against something very bad indeed.

With that background it should come as no surprise that both organizations began promoting research into the base causes of autistic disability.  Progress was made – scientists identified numerous possible causative factors for serious autistic disability.  But the identification of genetic errors (for example) does not quickly translate into a therapy for affected individuals.  The result:  we know more, but it doesn’t help the people living with autism today.

At the same time, other researchers developed new therapies; techniques that helped autistic people at all levels function better and live more independently.  New technologies emerged that gave voice to people who were formerly largely mute, and they said some surprising things.  As positive as those development were, though, they were limited to those few people who could afford the new therapies or who received them free as part of research programs.

The expansion of knowledge about autism led to an expansion of the way we define it.  As we recognized traits of autism, we found those traits in a wider swath of population than anyone previously imagined.  That led to an explosion of diagnoses and the perception that autism was a runaway epidemic; something that fed the fires of “cure” more and more.

While that was going on, possible environmental triggers for autism were discussed, and the possibility that we are unwittingly poisoning our children and ourselves raised its scary head.   We certainly need to find out if this is the case, and take corrective steps as needed.  But important as that is, it doesn’t help today’s autistic population.

For us, the discussion of how we got this way is a not-too-productive and often offensive sideline.  We’re most concerned with making our best life with whatever cards we’ve been dealt.  Our needs are many, varied, and disparate, but we’re pretty united in that we want help and understanding much more than we want to blame someone or some thing for “making us autistic.”

It all adds up to a situation where most of us are dissatisfied.

You might say we have a few big problems.  First, we have made less progress than people want in developing tools to meaningfully remediate disability.  Second, the tools we have developed remain largely unobtainable because they are costly, and not covered by most health insurance plans.  Increased awareness has made a third problem painfully obvious in recent years:  Our education, legal, and other social systems have not evolved in lockstep with our knowledge of autism.  Consequently, we fail in school, have trouble with the law, and fail socially and in the workplace far more than ordinary people, and there’s precious little being done about it.

As you might imagine, that leads to frustration on the part of families living with autistic disability.  After six years of this, we have an autism community that is very unhappy on many fronts.

I suggest it’s time for a change, and I offer this as a constructive suggestion for IACC, NIH, CDC, and Autism Speaks.

I believe in the basic research we have funded over the past few years.  I have been privileged to review and vote for much of the work that is funded today, and I am very confident that it will lead us to new and ultimately beneficial discoveries.  At the same time, I recognize this is a very long-term game, and the biggest benefits may not arrive for a decade or more.

In the past few years I have seen an increasing recognition of this reality, and I’m happy to see that we are funding more research into behavioral therapies of all sorts to help today’s autistic population enjoy their maximum potential for success and quality of life as we are right now.  In other words, we are beginning to embrace the notion of “helping us be the best we can, the way we are.”  That is vitally important because it is the most effective thing we can do for our population now.

I think that work should continue, but I believe we should direct a significant fraction of tomorrow’s uncommitted research funds in a different direction.  I believe we should be funding more studies to evaluate the effectiveness of tools that have already been developed, and I think we should fund more research aimed at building a solid base of evidence for what emerges as the most effective extant therapies.

I also think we should conduct more studies to evaluate some of the unconventional therapies being marketed to parents today.  Skeptics are often dismissive of alternative diets, vitamin or hyperbaric therapies (to name just three) but the fact is, many parents employ those techniques, and I believe we have a duty to ascertain their efficacy and safety for the sake of the kids. 

Finally, I believe Autism Speaks and other groups that can lobby (NIH and CDC can’t do that) should shift more of their resources from basic research to funding and using these studies to push state and Federal health care legislation that will put more of these therapies under the umbrella of general health insurance.

I hope we can fund Autism Speaks and other lobbying groups to address the broader social challenges of autism:  acceptance and adequate supports in our schools; bullying and discrimination; enhanced understanding in the legal system; and understanding and developing ways to help us find parity in job and social success.

That, I believe, is the best way to deliver meaningful benefits to our real constituency – the people living with autism today.

I’d like to close with some facts, and a call for action:

1 – We have developed a number of promising therapies – some medical, some behavioral, some environmental – that seem to offer meaningful help to certain autistic people.

2 – We see the promise of new technologies like tablet computing/apps but we’ve left most development in the hands of private companies, which leaves the resultant products unaffordable as things stand today.

3 – History shows that some of the greatest discoveries come from basic research and I believe we must continue in that direction.  At the same time, we can’t overlook the needs of people today.

4 – The reason most new therapies are not covered by insurance is that there is not a strong body of evidence that they work, nor are there standards for how they will be delivered. Consequently, insurers wriggle off the hook saying they don’t know what they’re paying for, or if it will work.  That’s why there’s such a critical need to fund studies that build evidence, and develop standards for delivery.

5 – Changing the way our education, legal, and social systems accept, engage, and help autistic people is going to be a massive and expensive effort; one that is just now beginning.  It’s even more critical as we begin to understand the true size of the autism community (including the large numbers of previously undiagnosed or misdiagnosed adults.)

This suggestion represents a significant shift of direction from our current policies.  I hope we can begin making this or a similar change, because the current program isn’t yielding the results our community wants or needs.

John Elder Robison

John Elder Robison is a member of the IACC, a member of the science board of Autism Speaks, and he’s served on boards and committees for both CDC and NIH. The views expressed in this article are strictly his own.