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 . . .
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 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?(c) 2007-2011 John Elder Robison
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 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?(c) 2007-2011 John Elder Robison
No comments have been added yet.
