Tuesday, December 8, 2015

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 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.

14 comments:

Michael Shor said...

I'd be very happy to do that.

Jean Sunell said...

I think this is great, John. I am a non-autistic parent with a 19 year old Aspie, as you are aware, so I don't qualify. I assume my son does but I know he will not participate. As a parent of an Aspie child I could relay information on what my son has gone through growing up and how his difficult transition from high school to community college and the work force had been very difficult for him, even though he is brilliant. I could participate through checklists, progress reports, letters if that is something that you need. I would not be able to attend any meetings at this point, as I am dealing with some severe physical health issues and have a long healing process ahead of me. Let me know if something like that would help.

Jean Sunell said...

I think this is great, John. I am a non-autistic parent with a 19 year old Aspie, as you are aware, so I don't qualify. I assume my son does but I know he will not participate. As a parent of an Aspie child I could relay information on what my son has gone through growing up and how his difficult transition from high school to community college and the work force had been very difficult for him, even though he is brilliant. I could participate through checklists, progress reports, letters if that is something that you need. I would not be able to attend any meetings at this point, as I am dealing with some severe physical health issues and have a long healing process ahead of me. Let me know if something like that would help.

Ted Gibson said...

I'd be glad to help. I have no children myself, but I am an Aspie with two Aspie nephews in college, and my cousin has an autistic son with limited verbalization. I guess my family provides a strong case for a genetic component to autism.

Nellie Moore said...

I would love to help. I'm an Autistic women, diagnosed last year at the age of 53, after a lifetime of missed diagnosis. If there is something I can do to make a difference and help others you can count me in. I need to see where I can get the recommendation you mention. I've not been in college for a long time though I do have college professor friends. I'm only a year into the community and still learning so I don't yet have contacts at any of the organizations. I so want to help though!

John Elder Robison said...

Nellie, I suggest you look to your local autism society or group. Get a recommendation from them, be part of their group, and go with the collective views and wisdom

Nellie Moore said...

Thank you John. I'm looking to see what is available locally now. I live in a rural area so a group would be in our next large city about 40 minutes away in Minneapolis. Thank you for the encouragement.

The Laughing Shadow said...

Thanks for this information John, I am on the spectrum and a volunteer autism research assistant with Keene State College's Neurolab as well as new to the game advocate (Networked withe NH democratic candidate for Governor, attending the NH council on Autism Spectrum disorders, etc). On top of this I have a background in social sciences and a M.ed. even though I was never able to thrive in those environments, nor in the USAF for which my service resulted in the disability pension that allows me the time and financial security to pursue these endeavors. I had been looking for more ways to contribute and this information could be the perfect opportunity for that and I am highly grateful for it. I am not currently a parent of an autistic child, though my daughter shows several sensory processing issues, but she is just 5 years old and the doctors are hesitant to commit to a particular diagnosis at this point, even still the shared experience of sensory issues alone being able to observe as a parent is useful. ASD runs strongly in both sides of my family as well, father, aunts, uncles, nephews, second cousins, etc so my familiarity with it is quite extensive, to the point that many behaviors labeled "autistic" seemed relatively normative to me growing up, so I feel I certainly have a great deal to contribute, here is hoping Keene State will write up a letter for me!

Sarah Frisch said...

By your leave, then! Thanks for posting this opportunity, Mr. Robison!

A Good Student said...

I am on the spectrum and have a daughter with autism that is transitioning into post-secondary life. Also, I am a graduate student in the autism/ABA area. Very interested but confused about where the application link is. I'm also from the Keene region of NH.

John Elder Robison said...

Good Student, there is no application link. There is a name, postal address, and email address for the contact. You speak to her and she will get you the forms

Michael Shor said...

The application form is at http://cdmrp.army.mil/cwg/docs/consumerform.pdf.

Autism Empowerment said...

Hi John! Thank you so much for sharing this opportunity. I am very interested in participating in this opportunity.

My husband John and I co-founded Autism Empowerment in Vancouver, WA in June 2011. We are a 501(c)3 nonprofit where everyone on our Board of Directors or in key roles is either autistic or has autistic family members.

Autism Empowerment is a passionate people-powered 501(c)3 nonprofit organization devoted to enriching and empowering the lives of children, teens, adults and families in the Autism and Asperger communities. Our programs promote a culture of acceptance for all abilities and are piloted locally with the goal of expanding regionally, nationally and worldwide.

The vision we work toward is culture change leading to a society that authentically accepts, includes and empowers all youth and adults on the autism spectrum, equipping each person to live their best life possible by pursuing the goals and dreams that matter most to them..

I am on the autism spectrum (identifying Aspie/Autistic) as are my two sons (9 and 16). I also have a lot of experience working in our community with autistic adults, teens, children and their families.

I will follow up with the information you provided and mention your name as a referral source if that is okay with you.

Thanks!
Karen Krejcha

Sarah Frisch said...

Mr. Robison, just wanted you to know I completed the application and interview process, and was accepted. Thanks again for posting this and letting everyone know about the opportunity.