Podcast Season 2 Episode 5: Walter Zahorodny
Every year the CDC announces an update regarding Autism Prevalence rates. In the early 80’s the rate was 1 in
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autism research
Thoughts on the Direction of Autism Research
Thoughts on the role of the Interagency Autism Coordinating Committee, from an autistic person. Note that the views in this essay are my personal opinions only, and not the views of the committee or any government agency.
One role of this committee (IACC) should be to serve as a bridge between the autism community and the Federal agencies charged with supporting that autistic people and their families. We started by identifying questions to be answered and then reporting advances in autism research.
In the past three years a glaring hole has emerged.
From the beginning autism diagnosis and treatment focused on children. Autistic behavior was first characterized in children in the 1920s and 1930s. By 1943 clinicians had observed that autistic symptoms were often present from the beginning of life. At the same time, regression had also been observed in some kids.
By 1950 Leo Kanner, George Frankl, and others had recognized the neurobiological basis of autism that most scientists accept today. As such, autism was recognized as a lifelong condition. Kanner and other pioneers of autism diagnosis would later take pride in following the development of some of “their” autistic children into adulthood.
Sixty-some years have passed since autism was recognized as a neurological difference. In that time countless child therapies have been developed but virtually nothing has been done for adults. In the modern era this committee began with a focus on autism in children. It is just in the past few years that we’ve begun to recognize adult needs.
Autism is unique in medicine, in that the support needs of adults are different from those of children. When we look at other lifelong medical conditions we see tools and therapies that help across the lifespan. For example, wheelchairs or artificial limbs are of the same use to adults and children. In many cases, medicines that help children also help adults.
That is sometimes true for autistic people too. Therapies that help us calm and self regulate can help children and adults alike. But adults have unique problems that children don’t share. Job coaching, for example. Recent research has shown that autistic adults have many previously unknown health vulnerabilities, and little is known of them. Finally, autistic children are assumed to live with their parents. Where are autistic adults supposed to live, when our parents are gone and we are not able to remain self-supporting and independent?
Over the past decade, we have spent over a billion dollars on autism research. While some of that research will surely benefit families of tomorrow, very little of it will benefit those of us living with autism today. It is my feeling that we should divide our efforts and follow a two-pronged approach when we allocate research funds for tomorrow.
We should continue our efforts to unravel the biological foundations of autism. We’ve already figured out that there are probably not one “autism” but rather hundreds or thousands of “autisms” . . . different pathways to a similar set of observable symptoms. That may lead to many different treatments for the most disabling aspects of autism. I hope we also find ways to relieve the many co-occurring conditions that plague autistic people and cause suffering and early mortality.
At the same time, I believe we should devote a significant portion of our research budget to develop tools that maximize the quality of life for those of us living with autism now.
In other words, I think it’s great that we may find a drug that helps relieve sensory overload for the autistic people of 2031. There’s still value in developing headphones or quiet spaces to help the autistic people of 2018. We can do both, and we should. The promise of a drug in 10 years is not what a person who suffers today wants to hear. It’s within our power to do both, by following parallel paths – one long and the other short. One path may be medicine based, while the other relies on electrical engineering.
That’s also an important point – we first saw autism as a medical issue. Now it’s clear that practical assistance for autistics may come from chemists, electrical engineers, psychologists, computer scientists, and a host of other professions. We need to bring those people into our community, and into these processes.
We have – in my opinion – lost sight of our duty to the American people. That duty is to deliver tangible timely benefit to the autism community. By focusing on the long term, we have effectively ignored the current plight of millions of Americans in the hope that “we will solve this problem for the generation of tomorrow.” By focusing on medicine we have failed to support technology based aids that could be delivering real value today.
I think this happened with the best of intentions. We first approached autism like smallpox or polio – as a disease to be vanquished. Why invest in developing supports for what was effectively a plague? Better we find a cure, or even better, a vaccine to head it off before it begins. That is the mindset most medical professionals brought to autism research a decade ago. Few hold that view today.
Today’s view is more nuanced. On the one hand, we see that environmental exposures can precipitate maladaptive autistic development, and we seek to identify those causes and head them off. At the same time, we see others who inherit autistic differences, grow up to be reasonably functional, and pass a form of autism on to their own children. Then there are the people who develop idiopathic autism – a disability with no known cause.
With such a heterogeneous population it should be clear that the “disease conquest” model we started out with is not the answer for every autistic. Yet that mindset continues to guide our research. The overwhelming majority of funding goes to basic research even as we recognize that there’s a significant portion of the autistic population for which that work is probably irrelevant. And their needs remain unmet.
The first step is to accept that autism is not what doctors thought it was, ten years ago. In fact it’s not any one thing. It’s many things. For each of those, we must ask – are we seeking a cure, or a remediation of disability or suffering? And we should also ask, is there a short term support or aid we can deploy while we pursue a greater long term goal?
The next step is to adjust our research goals with that in mind.
We must balance our duty to help the population living with autism today against the possibility of developing greater benefit for a future autistic population. That means recognizing and supporting autistic adults, throughout the lifespan. Autism is not a childhood issue that goes away. It is a lifetime condition.
John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.
(c) 2007-2011 John Elder Robison
Congressionally Mandated Autism Research and the Need for Community Reviewers
Last week I went to Washington to review autism research proposals for the Department of Defense. Most people have no idea Defense does autism research so I’d like to take a moment to explain . . .
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| A NIH Autism committee in session (DoD is similar) |
The proposals I reviewed are part of a program called the Congressionally Directed Medical Research Programs. They are part of what’s popularly called the peace dividend. That is, when we are not spending money to fight wars, some of that money is spent on medical research instead.
In FY14 the program invested one billion dollars in 3,500 research projects. Six million of those dollars went to autism, and the allotment for this year is similar. The CDMRP website has details of where the money goes and I encourage you to check it out.
The exact nature of the proposals I looked at is confidential, to protect the intellectual property of the scientists. But what I can say is this: All the proposals were for treatment trials, each of which was meant to have a high impact on the target population. Some were drug trials, some were behavioral therapies, and others were tests of devices or tools to assist us.
The winners of the awards will be announced next year. You can read about last years winners on the CDMRP website now.
There will be another round of research reviews next year. Proposals are typically evaluated a couple times a year. And that is where you may come in. I was the only autistic person reviewing autism grants. CDMRP has a mandate to get community input into research, but they do not have a reservoir of autistic people to do this.
They do have parent reviewers, but non-autistic parents (well meaning as they are) are third person reviewers, not first person reviewers. Autistic parents (like me) are actual autistic reviewers, which is what they need.
This does not mean there is no role for parents. Quite the contrary. Parents are the best reviewers to speak for those children who cannot speak for themselves. But autism is a lifetime condition, and most autistic people can speak for themselves, and in this context they/we should do so. The ideal reviewer is an autistic parent with an autistic child, because that parent will know both perspectives. The ideal review committee will have all points on the spectrum represented by a group of community members.
As it happened, there was a much larger cancer review program going on when I was there. EVERY community reviewer for that program – and there were a bunch – was an actual person with cancer.
If you are an autistic person with a desire to help the community I urge you to volunteer to be a reviewer for programs like these. The science officers NEED input from actual autistic people on what matters to us, what may work, and what won’t. You don’t need in depth knowledge of the science (though all knowledge helps) but you do need to think about research priorities and ethics.
I’ve put a link to the program here. Check it out and let me know what you think. Can you be a reviewer?
You don’t need to be a scientist. A big part of your job will be to tell the group if a particular study will be beneficial to the community, and why (or why not) Maybe you will see ethical issues – bring them up! What they need most is the autistic person’s point of view. A good example would be the scientist who says “that’s an aberrant behavior) while an autistic adult would say, “No it’s not. Its a comfort mechanism. Your words can cast things in a totally different light, and that is very important.
All of the Congressionally Directed Medical Research is guided by input from community members. In the case of autism, the team that organizes the grant reviews has had a hard time finding autistic adults who are willing to invest the time in learning the issues, and who want to serve. If you are such a person, they would love to hear from you. They also need more parents, and if that’s you, go for it. One twist in their application process is that they want a recommendation from a university or advocacy organization, because they expressly seek people who can represent the broader community and not just themselves.
So, for example, you might apply with a nomination letter from ASA, or ASAN. One reviewer I met was nominated by Autism Speaks. You might also apply with a nomination letter from a group like the Yale Child Study Center, or the Thompson Autism Center in Columbia, MO.
Reviewers are paid a modest honorarium. They cover your (our) travel costs, and give an allowance for meals. There’s one other thing you get: Connections to the science community. You’ll meet scientists who are committed to helping our population, and the science officers ad DoD who oversee the effort. You won’t meet the people who are applying for grants that day – you will meet other scientists who are reviewing the applications with you. That said, any of them might be applying for funding instead in the next round of reviews. That’s how the process works.
Even if you can’t talk about the specifics of what you review publicly (research confidentiality), I guarantee you will come away with a lot more knowledge, and hope for the future, and the knowledge that your input is helping steer that future in a way that benefits our community.
That will make you a better self advocate, and hopefully it will encourage you to take part in more science reviews.
This is the description page for the autism program
Here’s the contact info for Carolyn Branson, who handles the review boards. The grants are given by the Department of Defense, and overseen by government scientists. They use her company – SRA – to handle the logistics.
Consumer Reviewer Administration Manager, Peer Review and Science Management
SRA International, Inc. | www.sra.com
8490 Progress Drive, Suite 200, Frederick, MD 21701, USA
301.360.2150 x2056 (office) | 240.203.5270 (mobile)
carolyn_branson (at) sra.com
If you write her, tell them I sent you. Seriously. We need reviewers throughout government. It’s our chance to have a voice, and shape our future. Grab it!
John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and the forthcoming Switched On. He’s served on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.
(c) 2007-2011 John Elder Robison
Getting involved guiding autism research
In the early days of autism research non-autistic doctors and scientists observed autistic people like me, asked questions, and then
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