Money Speaks

No, this post isn't about the salaries of Autism Speaks' executives, although that interesting detail does seem to get mentioned a lot. Rather, it's about the online discussion of why autistic people don't like Autism Speaks, which—after more than three years—finally drew a response from Alison Singer on just what she was thinking when she made that infamous statement about driving off the George Washington Bridge with her autistic daughter Jodie in the car:

From the Autism Science Foundation blog:


The point I was trying to make in the film was that the lack of appropriate services and the thought of putting her in a terrible school made me want to drive off the bridge; not that Jodie did…

…After Jodie and I had visited several schools that day I remember I pulled the car over to the side of the road and just cried. There was just no way that I was ever going to let her be in a terrible school like that. I was overwhelmed and shocked because I thought these were our only options.


Assuming for the sake of argument that her explanation was sincere and that she genuinely was distraught about the lack of adequate schools, I'd say that she chose a very unproductive way of addressing that concern. Whatever one may think about the likelihood of a prenatal test or other eugenic nastiness resulting from the genetic research funded by Autism Speaks and ASF, it's indisputable that these genetic studies do nothing whatsoever to combat the social barriers faced by today's autistic citizens and our families. They will not improve educational opportunities for Jodie—or any other child like her—one iota. They are counterproductive because they soak up funds that might otherwise be put toward improving education and services.

Earlier this year, ASAN issued a statement calling on organizations that fund autism research, such as Autism Speaks and ASF, to show their commitment to improving the lives of autistic people by shifting their research funds away from genetic studies and toward projects that yield practical benefits. In short, these organizations are being asked to put their money where their mouth is, rather than just vaguely claiming that they are somehow advancing our futures. When it comes to judging their intentions, money speaks a lot louder than words.

Ripping, Running, and Advocating

Like many people, I usually get busy toward the end of the summer and have a lot of distracting errands that interrupt my routine; there's an expression "ripping and running," which describes such days. For others who might also have been busy and not had the time to put together comments for the Interagency Autism Coordinating Committee (IACC), I'm taking a few minutes to post this quick reminder that IACC comments are due today. (Details here.)

Even if you don't have time to write long detailed comments, please take a few minutes to put something together. It's important to make sure we get enough responses from self-advocates and pro-neurodiversity allies that the IACC knows it can't just ignore us. If you're stuck wondering what to write, here's a link to last year's ASAN comment, which has some useful talking points.


Edit: Here's a guest comment (thanks Katie!) to show how creative some of our folks are.


By Katie Miller

I did mine this morning. Here is a humorous excerpt:

What are the new opportunities and needs for advancing research and knowledge about ASD in section IV. "Which treatments and interventions will help?"

Instead of wasting money to prove once again that vaccines are not linked to autism, I think you should study why people believe in conspiracy theories, and what we can do to cure and prevent it. Research treatments and interventions that have helped holocaust and AIDS deniers. Establish a genetic bank of conspiracy theorist cell and tissue samples to identify risk factors and eventually lead to prevention and/or cure. Is believing in anti-vaccine theory linked to intelligence, emotional instability, or other genetic risk factors? Does it strike all populations equally? What can we do to help these people have a better quality of life? It is an enormous financial and psychological burden to care for an anti-vaccine theorist. The money they spend on dangerous, ineffective treatments for their children is enough to bankrupt a family, costing over $4 million across the lifespan of the theorist. Their numbers are increasing to epidemic proportions. Action is needed now.

IACC Season Again

Otherwise known as the season when good patriotic folks go hunting for ignorant anti-autistic prejudice in the US government, armed (figuratively, of course) with everything from bows and arrows to Thelma's shotgun. For those who have been wondering, I am not an author of that blog, but it does crack me up.

The dates for IACC comments are not actually the same each year, or even in the same season. I still haven't figured out if the committee members are just hopelessly disorganized or if it's some nefarious plot to confuse the auties. Anyway, I've reposted the commenting notice below. As usual, I hope my readers will make it crystal-clear to the IACC that there will be Nothing About Us Without Us.

Request for Information (RFI): Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research

On behalf of the Interagency Autism Coordinating Committee (IACC), the National Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the web-based form.

Background:

The IACC was established as a result of The Combating Autism Act. The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members. The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders. The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?
II. How can I understand what is happening?
III. What caused this to happen and can this be prevented?
IV. Which treatments and interventions will help?
V. Where can I turn for services?
VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record. You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

Reminder: IACC Comments Due

Today is the last day to submit comments to the Services Subcommittee of the Inter-Agency Autism Coordinating Committee on issues relating to services for the autistic population. The official notice can be found at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html, and comments should be sent to iaccservices@mail.nih.gov.

The fact that the committee is requesting comments on services is a direct consequence of all the pressure it has gotten from neurodiversity activists. When it was first established in 2006, the IACC was basically Curebie Central, focused entirely on cure and prevention research. It is now showing much more willingness to pay attention to the needs and concerns of autistic people. We need to take advantage of this opportunity and get as many comments submitted as we reasonably can.

The Autistic Self Advocacy Network has prepared a list of talking points to help with putting together last-minute comments on service-related issues. Responses should be limited to one page and should contain NOT-MH-08-016 in the subject line.

Changing Priorities

In the United States, the Interagency Autism Coordinating Committee (IACC) sets the priorities for spending on autism-related issues by the federal government. It holds meetings periodically, which members of the public can attend; and about once a year, it requests written comments from the public on its plans and activities.

The IACC was originally conceived not as a disability services agency, but as a means of enabling more efficient medical research on a condition that was widely seen as a genetic disease, with the goal of identifying autism genes for purposes of "prevention." Its first major contact with neurodiversity advocates came in late 2006, when Kevin Leitch collected signatures for a petition asking for respectful language in describing autistic people. Large numbers of pro-neurodiversity comments were submitted the next year, asking that the funds be directed toward research and services that would help the autistic population, rather than toward eugenic purposes.

This year, a significant change in tone can be seen in the IACC's notices requesting public comments. Most noticeably, there is now a subcommittee that is separately requesting public comments on services, in contrast to previous years when services were not even mentioned. Although there are still a few places in this year's Draft Strategic Plan where the word "prevention" appears, the committee is now being very careful to explain that it is referring to prevention of difficulties or challenges by means of early childhood services and therapies. It also expressly includes autistics as "stakeholders" from whom it seeks comments.

Those who submitted comments to the IACC over the past two years explaining the neurodiversity point of view, and who took the time to attend the public meetings and speak out about their opinions, deserve the credit for this change. Let's keep up the good work and send even more comments this year!


On behalf of the IACC, the National Institute of Mental Health has issued two Requests for Information (RFI):

Response Due 9/30/08: IACC Draft Strategic Plan for ASD Research is Available for Comment. The purpose of this time-sensitive RFI is to seek comments on the draft Strategic Plan from ASD stakeholders such as individuals with ASD and their families, autism advocates, scientists, health professionals, therapists, educators, officials of state and local programs for ASD, and the public at large. Please see the official RFI notice NOT-MH-08-021 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html for more information and instructions for responding by the deadline of September 30, 2008. Responses should be directed to iacc@mail.nih.gov. Please note: The draft Strategic Plan does not include cost estimates for implementation. However, the IACC has formed a workgroup to advise the IACC about the budgetary requirements needed to fulfill the research objectives described in the draft Strategic Plan. The IACC will review the workgroup recommendations at its next meeting on November 21, 2008.

Response Due 9/19/08 : Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders (ASD) The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. Please see the official RFI notice NOT-MH-08-016 at http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-016.html for more information and instructions for responding by the deadline of September 19, 2008. Responses should be directed to iaccservices@mail.nih.gov

For more information about the IACC, please see http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml

Rock the IACC

Yo, I'll tell you what I want,
What I really really want...

— Spice Girls


Last year, when the Interagency Autism Coordinating Committee (IACC) solicited public comments on federally funded autism research, many of us signed a petition created by Kevin Leitch that asked for respectful language to be used in all discussion of autism. That was a good start toward making the American government aware of our concerns, and it led to some improvement of the language and to more representation of the neurodiversity point of view. But as we've seen in the past two weeks with the quick victory against the Ransom Notes advertising campaign, our community has grown much stronger—when we stand together, we have the power not only to accomplish small successes, but to bring about far-reaching change. This year, we should be sending thousands of e-mails to the IACC demanding not only a respectful tone, but actual, substantive reforms in autism research.

The current request for comments, reposted in the Neurodiversity Weblog, was issued by the National Institute of Mental Health (NIMH) and has a response deadline of January 4, 2008. Comments, which have a two-page limit, should be sent to iacc@mail.nih.gov with this identifying code in the subject line: NOT-MH-08-103.

As one might expect of anything from NIMH, the focus is on psychological and mental issues, and this limitation needs to be kept in mind when composing comments. We can't, for instance, get more funding for special education services through this process because that is outside NIMH's jurisdiction. However, we can tell NIMH to put more research money into the areas of cognitive and educational psychology, in order to determine what kinds of school environments and programs are most useful for autistic children.

Here are some examples of studies I'd like to see funded:

Self-image in autistic children: I have in mind something similar to the psychological studies cited at the U.S. Supreme Court in the 1954 case of Brown v. Board of Education to demonstrate the harmful effects of racial segregation. If autistic children are shown videos of autistic and non-autistic people, which will they prefer? If they are asked which of these people are good or bad—and why—what will they say? How will they react when they are asked which of these people are like them?

Stigma and autism-awareness advertising: Get a large random sample of non-autistic people who have no autistic family members. Survey them regarding their exposure to autism-awareness media campaigns, also ask some questions as to how they'd feel about having an autistic neighbor or co-worker or employee, and see what sort of correlations show up.

Role models: Find three schools that have similar autism programs and are comparable in other ways. In one of the schools, have a positive Autism Month event (along the lines of Black History Month) that focuses on the accomplishments of notable autistic scientists, musicians, etc., and that brings in successful autistics from the community to speak to the students. In the second school, put up Autism Awareness Month posters and teach basic information about diagnostic criteria and prevalence. The third school is the control group and gets no special events. How will the autistic kids view themselves afterward? Will there be any significant differences in how the autistic and non-autistic children interact in each of the schools? What about the mental health of the autistic kids—any differences in anxiety, depression, and other such issues among these three groups?

These are just a few ideas off the top of my head; I'm sure y'all can think of many more. What's important is to send as many e-mails as possible from the neurodiversity point of view. Keep in mind that the budget available for autism research is a fixed amount, so every study that is funded in response to our comments reduces the amount of money that might otherwise be spent on eugenics research or on unethical and potentially child-endangering studies of chelation and other quackery. Our kids are not lab rats, and we need to make it crystal clear that we won't stand for any more shoddy science, biased assumptions, and damaging rhetoric.

Let's get our comments written, everyone!