Every year the CDC announces an update regarding Autism Prevalence rates. In the early 80’s the rate was 1 inRead more
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.
|A NIH Autism committee in session (DoD is similar)|
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.
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.