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Nick Walker on Neurodiversity: Some Basic Terms & Definitions

25 Oct

Nick Walker starts his introduction with “I’m an Autistic educator, author, speaker, transdisciplinary scholar, activist, parent, and martial arts master.” His writing is excellent and I’d highly recommend adding Neurocosmopolatinism to your list of blogs to track, if it isn’t there already.

A recent article by Mr. Walker covers the topic of neurodiversity clearly and accurately. It’s a great resource: Neurodiversity: Some Basic Terms & Definitions.

It is one of those articles I’d like to copy in it’s entirety. But instead I’ll send you to: Neurodiversity: Some Basic Terms & Definitions.

By Matt Carey

Press Release: IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership

1 Oct iacc-logo[1]

Below is a press release about the nomination process for the next Interagency Autism Coordinating Committee (IACC).  Note: I served as a public member to the previous IACC but my comments here and elsewhere are my own.

IACC Reauthorized by Autism CARES Act to Continue Through 2019; HHS Seeks Nominations for Public Membership (PDF – 94 KB)

On August 8, 2014, President Obama signed the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2014 (PDF – 256 KB) into law, reauthorizing and expanding the provisions of the Combating Autism Act of 2006 (PDF – 142 KB). New provisions include an increased focus on services and supports, a report on the needs of transitioning youth and adults, and the creation of an Autism Initiative within the Department of Health and Human Services to ensure accountability and ongoing implementation of autism activities across the Department. The new law also reauthorizes the Interagency Autism Coordinating Committee (IACC) to continue until September 30, 2019.

The IACC is a federal advisory committee composed of federal officials and non-federal public members, including autism self-advocates, family members, representatives of private autism organizations, and other public stakeholders. The committee is charged with:

  • Providing annual updates on its Strategic Plan for Autism Spectrum Disorder (ASD) Research, which under the new law will be expanded to include recommendations on services and supports provision;
  • Providing annual updates on its Summary of Advances in ASD Research, a document that summarizes each year’s top ASD research advances;
  • Providing advice and recommendations to the HHS Secretary regarding issues related to ASD;
  • Providing a forum for public discussion of issues related to ASD.

As a federal advisory committee, the IACC does not have authority or appropriations to fund research or services activities, nor to implement federal programs. The IACC’s role is to provide advice that can be used by federal agencies to guide them in setting program and funding priorities, and in developing partnerships with private organizations to address issues of importance to the autism community.

Under the Combating Autism Reauthorization Act of 2011 (covering the period from 2011-2014, PDF – 121 KB), the IACC completed several important projects, including issuing: a letter to HHS Secretary Kathleen Sebelius regarding the need to fill critical gaps in health coverage for people on the autism spectrum; a statement from the Committee on the 2012 update in the ASD diagnostic criteria, which emphasized the importance of basing healthcare and service provision decisions on the need of the individual; and an in-depth 2013 IACC Strategic Plan Update that analyzed progress made over a five-year period (2008-2012) toward implementing the recommendations in the IACC Strategic Plan.

Reflecting on the completion of the current IACC members’ terms on September 30, 2014, IACC Chair Dr. Thomas Insel stated, “We deeply appreciate the contributions and accomplishments of the IACC members who served on the Committee from 2012-2014, and we look forward to working with the new committee, starting in 2015, to address the community’s most pressing ASD research and services needs.”

The Autism CARES Act extends the work of the IACC another 5 years to 2019. The Department of Health and Human Services (HHS) is currently seeking nominations of individuals to serve as non-federal public members on the next iteration of the committee. Members of the public are welcome to nominate individuals with personal and/or professional experience with ASD for public membership on the committee. The Office of Autism Research Coordination (OARC) at the National Institutes of Health, which manages the IACC, will assist the Department in collecting public member nominations. Selections and appointments of public members will be made by the Secretary of Health and Human Services.

For more information on the IACC public member nomination process, please see the 2014 IACC Call for Nominations Announcement.***

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit:

Interagency Autism Coordinating Committee 2014 Call for Nominations Announcement

1 Oct

Below is the call for nominations announcement for membership in the next IACC.

Note: I served as a public member to the IACC in the last term, but my comments here and elsewhere are my own.

Interagency Autism Coordinating Committee
2014 Call for Nominations Announcement


The Interagency Autism Coordinating Committee (IACC), established in accordance with the Combating Autism Act of 2006 (Public Law 109-416, PDF – 49 KB) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2014 (Public Law 113-157, PDF – 211 KB), is open from October 1, 2014- November 14, 2014 for nominations of individuals to serve as non-federal public members on this committee (see press release). The Secretary of Health and Human Services (Secretary), who will make the final selections and appointments of non-federal public members, has directed the Office of Autism Research Coordination (OARC) to assist the Department in conducting an open and transparent nomination process.

Who Is Eligible?

Nominations of new non-federal public members are encouraged, but current non-federal public members may also be re-nominated to continue to serve. Self-nominations and nominations of other individuals are both permitted. Only one nomination per individual is required. Multiple nominations for the same individual will not increase likelihood of selection. The Secretary may select non-federal public members from the pool of submitted nominations and other sources as needed to meet statutory requirements and to form a balanced committee that represents the diversity within the autism spectrum disorder (ASD) community. Those eligible for nomination include leaders or representatives of major ASD research, advocacy and service organizations, parents or guardians of individuals with ASD, individuals on the autism spectrum, healthcare and service providers, educators, researchers and other individuals with professional or personal experience with ASD. In accordance with White House Office of Management and Budget guidelines (FR Doc. 2014–19140), federally-registered lobbyists are not eligible.

Responsibilities of Appointed Non-Federal Public Members

As specified in the Committee’s authorizing statute (section 399CC of the Public Health Service Act, 42 U.S.C. 280i-2, as amended), the Committee will carry out the following responsibilities: (1) monitor autism spectrum disorder research, and to the extent practicable, services and support activities, across all relevant Federal departments and agencies, including coordination of Federal activities with respect to autism spectrum disorder; (2) develop a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; interventions, including school and community-based interventions, and access to services and supports for individuals with autism spectrum disorder; (3) make recommendations to the Secretary regarding any appropriate changes to such activities, including with respect to the strategic plan; (4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder, and the process by which public feedback can be better integrated into such decisions; (5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including, as practicable, for services and supports, for individuals with an autism spectrum disorder and the families of such individuals, which shall include (A) proposed budgetary requirements; and (B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative; and (6) submit to Congress and the President: (A) an annual update on the summary of advances; and (B) an annual update to the strategic plan, including any progress made in achieving the goals outlined in such strategic plan.

Committee Composition

In accordance with the Committee’s authorizing statute, “Not more than 1/2, but not fewer than 1/3, of the total membership of the Committee shall be composed of non-Federal public members appointed by the Secretary.”

All non-Federal public members are appointed as Special Government Employees for their service on the IACC, of which:

  • At least two such members shall be individuals with a diagnosis of autism spectrum disorder;
  • At least two such members shall be parents or legal guardians of an individual with an autism spectrum disorder; and
  • At least two such members shall be representatives of leading research, advocacy, and service organizations for individuals with autism spectrum disorder.

The Department strives to ensure that the membership of HHS Federal advisory committees is fairly balanced in terms of points of view represented and the committee’s function. Every effort is made to ensure that the views of women, all ethnic and racial groups, and people with disabilities are represented on HHS Federal advisory committees and, therefore, the Department encourages nominations of qualified candidates from these groups. The Department also encourages geographic diversity in the composition of the Committee. Appointment to this Committee shall be made without discrimination on the basis of age, race, ethnicity, gender, sexual orientation, disability, and cultural, religious, or socioeconomic status. Requests for reasonable accommodation to enable participation on the Committee should be indicated in the nomination submission.

Member Terms

Non-Federal public members of the Committee “shall serve for a term of 4 years, and may be reappointed for one or more additional 4-year terms… Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of such term. A member [with a valid appointment] may serve after the expiration of the member’s term until a successor has been appointed.”

Meetings and Travel

“The Committee shall meet at the call of the chairperson or upon the request of the Secretary. The Committee shall meet not fewer than 2 times each year.”

In the years 2008-2014, the IACC held an average of 16 meetings, workshops and phone conferences per year, including full committee, subcommittee, working and planning group meetings, and workshops. Travel expenses are provided for non-federal public Committee members to facilitate attendance at in-person meetings.

Submission Instructions and Deadline

Nominations should include a cover letter of no longer than 3 pages describing the candidate’s interest in seeking appointment to the IACC, including relevant personal and professional experience with ASD, as well as contact information and a current curriculum vitae or resume. Up to 2 letters of support are permitted in addition to the nomination, with a page limit of 3 pages per letter. Please do not include other materials unless requested.

Nominations are due by 12:00 midnight Eastern Friday, November 14, 2014 and may be sent to Dr. Susan Daniels, Director, Office of Autism Research Coordination/NIMH/NIH, 6001 Executive Boulevard, Room 6184, Bethesda, Maryland 20892 by standard or express mail, or via e-mail to

More information about the IACC is available at

President Obama signs Autism CARES Act into law

12 Aug

The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 has been signed by President Obama, making it law. This will extend and expand on the framework for authorizing appropriations for autism research and for coordinating research efforts in the U.S..

Here is the summary for the bill:

Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 or the Autism CARES Act of 2014 – (Sec. 2) Requires the Secretary of Health and Human Services (HHS) to designate an official to oversee national autism spectrum disorder (ASD) research, services, and support activities. Directs the official to implement such activities taking into account the strategic plan developed by the Interagency Autism Coordinating Committee (the Interagency Committee) and ensure that duplication of activities by federal agencies is minimized.

Extends through FY2019: (1) the developmental disabilities surveillance and research program; (2) the autism education, early detection, and intervention program; and (3) the Interagency Committee.

(Sec. 3) Includes support for regional centers of excellence in ASD and other developmental disabilities epidemiology as a purpose of grants or cooperative agreements.

(Sec. 4) Requires information and education activities to be culturally competent. Allows a lead agency coordinating activities at the state level to include respite care for caregivers. Allows the use of research centers or networks for the provision of training in respite care and for research to determine practices for interventions to improve the health of individuals with ASD.

(Sec. 5) Revises responsibilities of the Interagency Committee concerning:
• inclusion of school- and community-based interventions in the Committee summary of advances,
•monitoring of ASD research and federal services and support activities,
• recommendations to the Director of the National Institutes of Health regarding the strategic plan,
• recommendations regarding the process by which public feedback can be better integrated into ASD decisions,
•strategic plan updates and recommendations to minimize duplication, and
•reports to the President and Congress.

Revises Interagency Committee membership requirements to specify additional federal agencies that might be represented and to modify the non-federal membership.

(Sec. 6) Modifies requirements for reports by the Secretary on ASD activities. Adds a requirement for a report to Congress concerning young adults with ASD and the challenges related to the transition from existing school-based services to those available during adulthood.

(Sec. 7) Authorizes appropriations to carry out the developmental disabilities surveillance and research program, the education, early detection, and intervention program, and the Interagency Committee for FY2015-FY2019.

By Matt Carey
note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

Why the “Autism Policy Reform Coalition” was wrong

1 Aug

The Autism CARES Act has passed the Senate. Assuming it is signed by President Obama it will soon become law. This extends and expands the framework set up previously under Pub. Law No. 109-416. The only vocal opposition to this bill that I saw came from within the autism communities. (ASAN was neutral, I believe). In specific, a group of small organizations with a focus on vaccines as causing autism formed the Autism Policy Reform Coalition. Autism CARES had a lot of momentum and I think even a good alternative bill would have faced difficulty replacing Autism CARES. But the proposal by the Coalition was not good.

Let’s start with the current structure, as set out by Pub. Law No. 109-416. The government is advised on the research priorities–and other topics–by the Interagency Autism Coordinating Committee (IACC). The IACC has members representing the various federal agencies which fund autism research, representatives from private organizations funding autism research, researchers, autistics and family members of autistics. It does this through drafting and updating a Strategic Plan and an annual report to Congress on autism research advances.

It is important to keep in mind that the IACC policy as well as research mandates. Examples are the IACC Statement Regarding Scientific, Practice and Policy Implications of Changes in the Diagnostic Criteria for Autism Spectrum Disorder and the IACC Letter to Secretary Sebelius on Health Coverage. So it can advise on policy as well as research. There’s just a more clear structure to what is expected in terms of research advice (the Strategic Plan is required. Policy advice is not).

In order to make the current system work there is an Office of Autism Research Coordination (OARC). These are the dedicated people who do the hard work. For example, they plan the meetings, make them work (which takes a lot of people), put together the reports, and more. OARC are a lot of hard working people doing a thankless job, without whom this process would fall apart.

That’s where we are today (at least from my point of view). Autism CARES adds an additional duty–someone in Health and Human Services will be charged with being the point person on autism. Plus some specific projects (like a report on adults and transitioning youth).

The Secretary of Health and Human Services shall designate an existing official within the Department of Health and Human Services to oversee, in consultation with the Secretaries of Defense and Education, national autism spectrum disorder research, services, and support activities

This official will “take into account” the Strategic Plan and make sure that research is not unnecessarily duplicative.

All these details sound like a lot but it’s fairly straightforward–there is the IACC advising the government, with support from OARC and now a point person in HHS overseeing the implementation of the government’s strategy. It’s simple, and it puts stakeholders (autistics, family members and researchers) directly in the stream drafting the Strategic Plan.

Some people suggest that no one listens to what the IACC has to say. To those people, I say, take a look at who the federal members are. That’s a lot of high level, decision making people who are involved with drafting the Strategic Plan and who listen to the public members every meeting. Again, the process puts stakeholders right in the mix with the decision makers. Also, most of the research being performed falls into the project areas the IACC set out in the Strategic Plan. Does the IACC have control? No. Influence? Yes.

Now consider the plan that was offered by the Autism Policy Reform Coalition. Who knows if anyone in the legislature seriously considered this proposal as a viable option to Autism CARES. Let’s start looking at why I, for one, didn’t see this as a viable option. In place of the IACC, they create two offices. The Office of Autism Spectrum Disorders Research and the Office of National Autism Policy Coordination. OK, see what they did there? They split the research and policy parts into two offices. Each will create separate Strategic Plans, each in their own area. Each Office will have need support staffs, like the IACC has OARC. So now you have four entities. Where are stakeholders in this? Well each new Office gets its own “advisory panel”. So you have six entities, assuming that the advisory panels share the support staff of the Offices they are attached to. If not, then you have eight entities.

Getting confusing?

More than just creating a lot of jobs (coming out of the autism budget), while these proposed stakeholder advisory panels have voting power in drafting the Plans put out by each office, these advisory panels are one step removed from the planning process. They are separate

Why would someone propose this? I can’t say. I can say that in this proposal the advisory groups would be majority or entirely stakeholders. So, within their own advisory panels, stakeholders would have more power to make statements without having to convince non-stakeholders to vote along.

Much as I write about autism politics, I’m no fan of politics. I would never trade the opportunity to work directly with the decision makers for the chance to make statements.

Oh, yeah, and about those stakeholders. Here’s one paragraph discussing an advisory panel:

An Advisory Panel of qualified parents or other relatives of persons with autism shall be established, modeled on the integration panel for this purpose existing within the Congressionally Directed Medical Research Program (CDMRP). As with the CDMRP panel, the integration panel to the OASDR shall have voting rights with respect to the drafting of the annual strategic plan for autism research, and with respect to grant requests presented to the OASDR for the award of autism research funds.

If your eyes glazed over with the alphabet soup, let me draw your attention to the role of autistics in the advisory panel. Or, to be more accurate, the fact that there isn’t a role for autistic adults. We are back to “the autism community is comprised of parents” philosophy.

The fairly minimal costs for the administrative overhead for this Office should be found in offsets from the existing CAA funding by redirecting non-priority dollars authorized to the NIH and HRSA under the prior versions of the CAA

“Minimal costs” and a new government entity are not terms I would put in the same sentence. More important to me, what are “non-priority dollars”? Not spelled out, but no priority is given in their document to, say, improving the lives of autistic adults. Yes, there would be money to move around since priorities would shift.

Which begs the question, what do they put as a priority?

The statute should redirect HRSA resources on autism towards research designed to create a medical model for autism management, a special patient population standard of care.

In my own opinion, a large fraction of research effort is already directed towards medical management. If we look at the autism research portfolio (here data from 2010):

2010 ASD Research Funding by IACC Strategic Plan Question – All Funders
(Total ASD funding = $408,577,276)


You might say, “treatments and interventions, that’s only 17%?”. Yeah, but you gotta include biology, and that’s another 22%. Without an understanding of the biology of autism, you will never get to effective therapies. Well, maybe in some sort of Edisonian approach. However that not only takes a long time, but it’s pretty obvious people aren’t light bulbs. Edison burned out a lot of light bulbs in his search to find a good filament. Groping around blindly for treatments can lead to disastrous results in humans. Perhaps the ARPC may feel they already know the biology of autism (vaccine injury, heavy metal poisoning, oxidative stress, neuroinflammation and more). That hasn’t always worked out so well.

At present the majority of federal autism research funds go to NIH. About 80% per an article in Congressional Quarterly that just came out. The Coalition’s proposal focuses primarily on NIH. Too much in my opinion. While one could say that might be justified given their large stake, in my opinion their proposal doesn’t do a good job of coordinating with the other federal funding agencies. And there little to no coordination with private funders. Private funders account for a large amount of autism research dollars. Simons Foundation, Autism Speaks, Autism Science Foundation and more private organizations contribute a great deal to autism research. In 2010, the Simons Foundation alone was the second largest funding agency after NIH. Yes, a larger contribution than any other federal agency than the NIH.

The Coalition further proposed assigning the funds for the NIH to their proposed Office of Autism Spectrum Disorders Research. It sounds like this would give more power to the advisory groups, but without some framework whereby this Office manages the funds, it’s just bookkeeping.

The Coalition presented themselves as wanting to delay Autism CARES to make some small but helpful changes. They were neither small nor helpful.

I had hoped to write something before Autism CARES passed. While it’s pretty much academic now (and likely was even before Autism CARES passed as I don’t think the Coalition had much traction), it’s worth reviewing their proposal.

By Matt Carey

note: I serve as a public member to the IACC but all comments here and elsewhere are my own.

More Canary Party financial documents

1 Aug

The Canary Party is a tiny organization focused on promoting the idea that vaccines cause autism. They have branched out some with GMOs and “health freedom”, but their core seems to be the failed idea that vaccines cause autism. I’ve previously posted some of their financial documents (here and here)

Here are finance disclosure forms for

They took in
$72,018.66 in 2011
$48,748.95 in 2012
$17,425.00 in 2013
$6,275.00 reported as of June 2014

they had about $3,100 on hand as of June 2014. Where before they had some large donors and a number of small donors, so far this year all donations have been from Canary Party officer Jennifer Larson.

In previous years, they had thousands of dollars in expenses for stays at the Hyatt/Ritz and Hyatt/Four Seasons, this year they have two modest travel expenses totaling under $1000.

No parties gatherings are listed this year like their $11,000 convention in 2012.

They’ve become less transparent in their expenses. In 2013 they list $4,500 as “Dues and Membership Fees: Software” and $2,250 one month and $2050 another in “Other Services: Outside Services”. Some or all of that could be payments to blogger Ginger Taylor, who in 2011 and 2012 was paid $4,500 a month for parts of the year as “media consultant” and “Public Relations/Fundraising Service”. Hard to say, it’s not transparent.

It looks like this effort may keep moving along, self funded at a low level, for the foreseeable future. But as a major, grass-routes organization it seems to be failing.

By Matt Carey

Are congressmen Justin Amash and Rick Nolan being courted by the vaccine/autism community?

30 Jul

The groups promoting the idea that vaccines have caused an epidemic of autism have always been politically active. There’s been a resurgence in recent years, with the Canary Party and lobbying and donations and lobbying asking for congressional hearings on autism. When I got an email today from Generation Rescue (an organization promoting the idea that vaccinesasking me to donate to Congressman Bill Posey, I thought I’d take a new look at and see what donations have been made lately.

Canary Party officer Jennifer Larson donates from her company (Vibrant Technologies). Another Canary Party officer is Mark Blaxill. Searching OpenSecrets for their names I find that they are (a) not donating to Darryl Issa (whom I’ll discuss below), (b) donating to Bill Posey and (c) have started donating to Justin Amash and Rick Nolan. Here are screen shots (click and click to enlarge):



And I haven’t checked to see who else is donating to these members of Congress.

Jennifer Larson recently donated $40,000 to Congressman Darryl Issa. Congressman Issa chairs the House Committee on Oversight & Government Reform. This same committee held hearings on autism, sadly wasting a lot of time on the Canary Party’s failed vaccine message. One of those hearings included Larson’s colleague at the Canary Party (Mark Blaxill) presenting testimony. Interestingly, Congressman Issa did not attend the second hearing by his own committee last year. And now the money is moving to other politicians.

Congressman Amash sits on the Committee for Government Oversight & Reform (the same one that held the hearings). But he was criticized by one of the vaccine/autism groups for arriving late and not asking questions in the recent hearing.


Rick Nolan is a member of the Congressional Autism Caucus.

Ms. Larson also has a $2,000 donation to congressional hopeful Tom Emmer (May 13, 2014).

Interestingly, Gary Kompothecras does not seem to be supporting Bill Posey this election. He has in the past (and here) and lives in the same state as Congressman Posey. Whether the lack of donations this election cycle represent some of the friction within the autism/vaccine community is unclear.

Donating to politicians is of course appropriate and legal. As is following money from special interest groups.

I hope these politicians do their own research. The vaccine/autism idea has caused a great deal of harm to the autism communities and to public health.

By Matt Carey


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