Big chance to tell the NIMH how to direct autism research

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http://grants.nih.gov/grants/guide/noti ... 8-003.html

If you want to influence NIMH research funding into autism for very little effort on your part-- compose a politely worded short(ish) letter to the IACC (Interagency Autism Coordinating Commitee). The email address is below where the excalmation points are in the quoted text. You need to get it to them by January 4th of 2008 (soon). There is one autistic adult member on the IACC, Stephen Shore and he may or may not be speaking very adequately for autistic adults... so here's your chance to speak for yourself. All y'all!

Do you think that there needs to be research into ... hyperacusis (hyper sensitive hearing) ... dyslexia... hyperlexia... stress induced illnesss... effect of autism on Native American families... the best way of providing accurate diagnosis to ASD people over the age of 25 .... the number of autistic adults hospitalized each year for... whatever ... the effect of autism on Russian American families in the deep south... negative effects of "intensive early intervention". Name whatever is your interest that would be more or less testable in autism research. Epidemiology can be like "The rate of autism in North Dakota Lutherans" and that would be under NIMH funding, potentially, ... but some things like, "Job Satisfaction among ASD adults living in North Dakota" might be more like sociology and probably wouldn't be funded by NIMH. The letter below gives some ideas of areas of research, too.

You foreigners.... guess what? You can send them an email, too. The NIMH funds research overseas, and the worst they can do is give your thoughts less weight than they would an American's. Doesn't hurt to tell them what you think, they won't yell at you.

Again, try to make your points as clearly as possible without writing 2,000 words on why you think that they should focus on Chromosome 3p 12-15. Short and to the point is good. Polite and formal is good. Something vaguely like this:

"To whom it may concern,

I suggest that NIMH funds would be best spent on research into: 1) how well services are being provided to certain populations. and 2) perception in autistic people, namely auditory and visual systems. To answer these questions, I would suggest you...."

What will happen is that they will have someone "digest" all the comments so that if many people say they want resarch "X" and three emails indicate people want "research Y" . The person who writes up the findings of the public input will say, "We received many requests for research X and three (or a few) were interested in research Y."


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Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders (ASD)
Notice Number: NOT-MH-08-003

Key Dates
Release Date: December 19, 2007
Response Date: January 4, 2008

Issued by
National Institute of Mental Health (NIMH, (http://www.nimh.nih.gov)

Description

The purpose of this time-sensitive RFI is to seek input from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, state and local programs for ASD, and the public at large about what they consider to be high-priority research questions.

Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and requires that the IACC develop a strategic plan for ASD research. The IACC includes both Federal and public members who are active in the area of ASD research funding, services, or advocacy. In its inaugural meeting on November 30, 2007, the IACC approved a process for developing the strategic plan that includes multiple opportunities for stakeholder input. This RFI is a first step in receiving broad input at the beginning stages of plan development.

To identify research priorities for possible inclusion in the strategic plan for ASD research, the IACC will convene several scientific workshops in January 2008. The responses received through this RFI will be collated, summarized, and provided to workshop participants. The scientific workshops will be organized around four broad areas of ASD research:

Treatment – includes ASD treatment, intervention, and services research that aim to reduce symptoms, promote development, and improve outcomes. This area includes the development and evaluation of medical, behavioral, educational, and complementary interventions for ASD. In addition, this area includes research studies that evaluate the effectiveness of treatments in real world settings, disparities in ASD treatment among specific subpopulations, practice patterns in ASD programs and services, and their cost-effectiveness.

Diagnosis – is concerned with the accurate and valid description of ASD (phenotype) both at the individual and the population level. The public health impact of ASD can be better understood by such studies. In addition, this area concerns itself with the diversity of what constitutes ASD and the characteristics of the condition over the lifespan.

Risk Factors – has to do with investigations of the factors that contribute to the risk of having an ASD in a given person or population. This includes genetic studies of clusters or sporadic occurrences of ASD, studies that focus on environmental factors, e.g., intrauterine events or exposure to toxins, which could lead to ASD, and the interaction between these factors that concentrate risk for ASD.

Biology –studies the underlying biological processes that lead to developmental and medical problems associated with ASD. This includes research in the area of neurosciences but does not confine itself to neurosciences. Therefore, research on other organ systems, interactions between organ systems, and/or other disease processes are included in this area.
The development of the strategic plan is expected to take approximately six months and will include several additional opportunities for public input.

Information Requested

We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions in the following areas (please refer to the above descriptions for each area).

What topics or issues need to be addressed to advance research on the:

Treatment of ASD?
Diagnosis of ASD?
Risk factors for ASD?
Biology of ASD?
Other areas of ASD research?
Responses

Please send responses to [email protected] no later than January 4, 2008.

Please limit your response to two pages and mark it with this RFI identifier NOT-MH-08-103 in the subject line. The responses received through this RFI will be collated, summarized, and provided to scientific workshop participants in January 2008. Summarized results will also be made available to the public. Any proprietary information should be so marked. Respondents will receive an email confirmation acknowledging receipt of their response, but will not receive individualized feedback.

Inquiries

Inquiries regarding this notice may be directed to:

Diane Buckley
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Telephone: 301-443-1220
FAX: 301-480-4415
Email: [email protected]

Im kinda of extreme I would want them to try to make a full blown cure that can make me think more like NT so I dont have such low self-esteem and making friends problems, which i would use for myself, not happy being depressed and having trouble fitting in everywhere

Next I think they should have a way to prevent it from happening ever again in the future so that peope never have to go through what i went through


can they come up with a cure? probably not it would be as hard to cure something that is coded into us like our way of thinking but I can still hope they can.

with the rest of the money it would be good if they can pinpoint what gene's cause it from happening to help future children an prevent it for future children which would be another decent step in the right direction atleast since I would most likely not have a kid with a chance to pass this on without more safety in that

so i would rank them

1. treatment
2. risk factors

I think that people on the spectrum who aren't profoundly autistic aren't broken so they can't be cured. It would be interesting if they did research on how best to learn better ways to educate and learn how to make the most of people on the spectrum, according to their temperaments. It would be a humbling experience for the researchers if they "got it."

I wonder if they'd "get it" if I sent them a letter. So many people seem to be completely blind to understanding aspy culture.

Also, doesn't a lot of funding come from drug companies? They would want magic pill that would cost a zillion dollars and, don't worry, your insurance will cover it.

I passed this info along and I'll pass it to more people.

The Church of the Cure seems to gather up parents and put blinders on them so all they do it imagine that their stolen child is inside that autistic shell and they spend lots of money and they make up and buy into subjective harmful anecdotal stories. They don't accept the person who needs their advocacy the most so when the child grows up uncured and without any plans for their lives, it ends up pretty sad.

holy crap. NIMH is a real thing? i thought the "rats of NIMH" books/movie was just a made up acronym for a fictional company. why have i never noticed that the National Institute of Mental Health spells NIMH before?

The best treatment is acceptance.

I have my own personal ideas. I think that I would personally like to see research being done into working with different neurostyles.. which can enable AS people and autistic people to find employment and relationships if they choose... I would like thinking processes mapped and explored, and perhaps nutritional research too, I think nutrition and exercise helps with sensory issues amongst other things.

Another thing I would like to see is more socially savvy AS people running social skills courses for AS people as I feel NT people are limited in their ability to explain NT society to us, it is kind of like a fish describing the water it is in to a cat, to use an analogy.

Im not sure about medical research.. I dont approve of research on animals and this comes into it a lot too.

Email sent!

Course, for every study that shows there are higher levels of mercury in us, I can show you a hundred more that say there aren't.

Sent.

Aspie_Diva, I need direction in what research is needed. I would love to be part of a lobby group which espouses your insight into autism research.
What I would really be is a number. All I know is that cognitive therapy is great, which is a limited view.

So please give me some ideas.

Diet and socialisation sounds good.

Robyn