Saturday, January 26, 2013

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.

22 comments:

forsythia said...

Meanwhile, time doesn't stand still for a child who's growing up all too quickly.

MindSpec said...

As scientists, we're trying to communicate significant research findings by stripping away the jargon but leaving all the scientific nuance. Check out our site: http://readingroom.mindspec.org/

jess said...

I am so grateful that you are who you are, where you are, doing what you do. Thank you, John, on so many levels.

Tutoring Mom said...

I couldn't agree with you more. I have often said that autism speaks has made the word autism well known but there is still little being done to access therapy and technological tools. Most families with autistic children have to have one parent stay home to care for the child, which makes money tight. Always enjoy reading your well researched and thought out work.

Elaine3 said...

i am interested in services for adults. my friend from the UK has no support in helping him find a job. he lives an isolated, lonely life with very debilitating sleep disorders that the doctors there refuse to help him with. he will be visiting me for 2 weeks in feb and i am looking for someone to met with who can show him that aspies in america do have friends and a life and jobs. not working for 4 years living in isolation is no type of life for anyone. i wish he could move here where there is at lest the ADA to help him get a job in computers. i really care about him and am trying to learn as much as i can to support him as best i can. but what can one person do?

Elaine3 said...

all the books i can find to read and wesites have no information for helping adults. kids with aspergers grow up into adults with aspergers and they deserve our help as well. thanks for you books mr. robinson as they have really helped. i live close to you. i never knew there were aspies so close to me. and the aspergers association of new england as well.

clg said...

Thank you for writing this, John. Knowledge and action helped my children and me to begin to navigate our world with increased feelings of self-acceptance and advocacy. I agree with your call-to-action points.

Katie Bretsch said...

Thanks, John. Bravo! Keep up the great work.

Kathy said...

Thank You Thank YOu Thank you!! Im am sharing this on my pages!! My kids are doing great today because of the therapies that are only emerging..because I DID NOT WAIT for the next decade for comparison studies ( There are peer reviewed studies now)...and even though this therapy RDI, is listed on the NAS report as emerging evidence based, most insurance companies will not fund! It totally turned my kids world around. This is why I created the blog called what is RDI.!!! SO thank you thank you !!

Me said...

Completely agree. Thanks for all your hard work.

Megan R. said...

Great post! I'm really glad to see this. As someone who works in student advising at a large university and also as a mental health professional with college-age students, I'm particularly concerned about access and success in college. More and more neurodiverse students are succeeding academically and are accepted into college, but lack of understanding, appropriate support, and transition planning make attending college incredibly overwhelming for these students. I've seen far too many extremely bright neurodiverse students struggle with depression, anxiety, and social stressors. They have no where to turn for effective help (without it costing too much money). So frustrating. I love that this posts focuses on helping members of the autism community succeed in the present.

Joshua Gonzalez said...

Thank you, John, for giving all of us a voice. I strongly agree that funds need to be directed to helping those of us living on the spectrum NOW. I feel that funds might be best used lobbying congress for legislation to assist ALL people with mental illnesses. There are so many of us who can't afford therapy or meds (or even a DIAGNOSIS) but make too much money to qualify for help. I think sweeping legislation to aid the mentally ill is the only way we can ALL get the basic help we need.

MT.Mama said...

Yes, Yes, Yes!!!

Suzanne B. said...

I completely agree with everything you say here and thank you for writing it. Can you imagine where we would be if scientists were still focused exclusively on the causes of disease (cancer, diabetes, etc.) instead of also researching potential therapies? Just because a disorder like autism is so complex that a purely "medical" intervention is unlikely doesn't mean our scientific/research community should be off the hook. They still have a societal responsibility to apply their skills in ways that might improve the lives of autistic individuals. But that push must come from those in agencies that fund research. I hope this essay is shared with every scientific research agency division leader who has a role in writing RFPs. It's time to ask for the right types of research proposals from scientists...the types of research that will clarify the efficacy or lack thereof of current therapies for autism.

Betty Mulligan said...

You are probably more knowledgeable than I about procedures to accomplish your points, since you are at the forefront of organizations that would be involved.

It occurred to me, however, that ASHA has had to do the same kind of advocating for communication disorders over the years, since insurance companies said "it's not a medical issue, it's educational" or "we have no efficacy studies", etc.

Perhaps some consultation with ASHA PAC would help on this MUCH NEEDED front.

Best regards,

Sullivan said...

"At the same time, other researchers developed new therapies; techniques that helped autistic people at all levels function better and live more independently."

I don't know how true this is, John. There have been some therapies with some evidence, and manuy therapies with little evidence. And a whole lot of therapies with a lot of hope and, sadly, salesmanship.

You said something last Tuesday which resonates with a lot of people--we need to find the successful autistics and learn from them. One definition of "success" is, as you pointed out, the successful geeks. Success can also mean happy, but still needing support. Success can mean a life without self-injury, the ability to communicate "don't do that", the ability to communicate "my stomach hurts".

But until we look at the adult autistics, something representing the entire spectrum, we won't know.

We seem to be waiting until today's kids grow up. Why?

Cubby learned from you. Great model, no?

--Matt Carey

John Elder Robison said...

I don't know if "Cubby learned from you - great model" is meant to be serious or sarcastic. The truth is, I can't tell what to believe about that myself.

I do think we can learn from successful autistic people. What separates them from those who "test as good or better" yet remain on disability or marginalized?

As for the definition of success . . . I just don't know. I have found commercial success but for all I know it's fleeting. I have never found lasting comfort security and happiness. I've never known a life free of anxiety.

The question I guess is how that compares to an "average man" if such a creature could be found

I still believe - relative success and individual definitions notwithstanding - that my words were true and accurate in their essence

Sullivan said...

"I don't know if "Cubby learned from you - great model" is meant to be serious or sarcastic. The truth is, I can't tell what to believe about that myself."

Serious. You have experience which helped Jack. You also helped Alex Plank. I admire you for that.

Keep in mind, no kid takes all the advice a parent has to offer. No parent can transfer all the hard learned knowledge to their kids. Some things have to be learned by each generation. But we need to tap into the experiences of this generation of autistic adults, across the spectrum, to be prepared to support the next generation.

The parent/child model is a very loose metaphor--and thus it will be wrong. But, the idea is that we should learn from this generation of autistic adults rather than wait until today's kids grow up and try to learn by trial and error with them.

I'll add, few people live a truly happy life. The Declaration of Independence says we have a right to pursue happiness. And no parent lives a life free from anxiety. It is a different thing than the anxiety that often comes with autism, but it is there.

To get back to the main point--I think this article and things you said at the IACC meeting are very much on point.

From my perspective, we need to do better with adults today, and today's kids when they become adults. If we don't spend some time learning from today's adults, we can do neither.

--Matt Carey

Asperger+ said...

Increasingly people are being diagnosed late in life. Our naieve survival mechanisms could provide a range of intervention options for kids as well as insight in the conditions that determine "success" in life. Including a definition of success :). E.g. structured environments when young, early options for safe exploration, placebo effects of expectations and aspirations etc.



Allison said...
This comment has been removed by the author.
Allison said...

Regarding recent media coverage about Adam Lanza of Newton : The kid's social world was shrinking - his disabilities isolated him from human contact. My heart breaks for him, his mother, and the slain children and adults and their families. Our society is full of huge cracks that people fall through into never-never-land. What can each of us do to help heal our society? Start noticing children and people around us who need contact and figure out little ways we can make them feel accepted in this world. As a mom with kids with disabilities, I know how isolating it is for kids to be "different." Recommended reading Look Me In The Eye, by John Elder Robinson.

John Elder Robison said...

Allison, I am familiar with Neil Young but I have no personal connection nor do I know much about what he's done with respect to autism. I'm here if he ever wants to write