Congressionally Mandated Autism Research and the Need for Community Reviewers

May 22, 2017 John Elder Robison 414 Views 0 Comments 8 min read

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 . . .

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. It’s 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.

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.

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.

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.

Carolyn Branson

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.

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 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 co-founded the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and an advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.

The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick.