I just got confirmation that the House Oversight Committee has invited two leaders of the autistic self-advocacy community to be witnesses at the hearing they are holding this Thursday on the federal government's response to autism. The majority members have invited Michael John Carley, president of the Global and Regional Asperger's Syndrome Partnership, and the minority members have invited Ari Ne'eman, president of the Autistic Self Advocacy Network.

Mr. Carley told me, "My hope is to convey to the committee that how we proceed (with special regard to tone), is just as important as the question of 'in what direction do we proceed?'"

Great news, but you aren't off the hook yet!

You still need to attend the hearing if you can, and we all need to fax our own written testimony to the committee.

This looks bad.

This looks very bad and I think it will have very negative consequences and I feel powerless to do anything about it:

The House Oversight and Government Reform Committee has scheduled a Nov. 29 hearing on the federal response to autism, its first in a decade. The panel, chaired by Rep. Darrell Issa (R-CA), will hear from panels of government experts, as well as advocates, including Autism Speaks Co-founder Bob Wright.

Apparently, no autistic people, or at least none from organizations headed by autistic people, will be testifying. I have requested a list of witnesses, but haven not gotten it yet. GRASP was not invited. Neither was ASAN. 

ASAN President Ari Ne'eman gave me this statement:

We're profoundly disappointed that the House Majority has once again decided to convene a hearing without the voices of the community impacted. Less than a year after the famous contraceptive hearing without women, the House Committee on Oversight and Government Reform will be convening a hearing on autism without any Autistic witnesses. ASAN condemns this kind of exclusion and urges the House leadership to include the voices of the organized Autistic self-advocate community.

Safe Minds, the anti-vaccine, anti-science, anti-public health group has been agitating for this for months:

Congressman Darrell Issa, Chair of the House Committee on Government Oversight and Reform, has promised a hearing on the problems with the Vaccine Court and at the CDC regarding autism/vaccine research. However, as of August 14th, the hearing still hasn’t been scheduled. We need to show him and the other committee members that the public is watching. It is time to get a date on the calendar. The hearing needs to be held before the end of September so that the election will not overshadow it. We want Congress to be paying attention!

Dr. Matthew Carey is worried, too:

The Committee held meetings 10 years ago which caused major harm to the autism communities. A platform was given for Andrew Wakefield (granted, his work was only questionable then but his ethical breaches were unknown) and the now disproved notion that the rise in the number of people diagnosed with autism was due to mercury in vaccines.

Much has happened in the past decade, but there’s a long way to go yet. The US government has a large effort on autism research, but more is needed. More effort on understanding the needs of adults, the broad spectrum of adults, for one thing. So many topics could use attention. The hearings of a decade ago helped to steer focus into unproductive areas. Let’s hope that doesn’t happen again. I’d like to do more than hope on that.

Thom Hartmann hosted an interview with Mike Elk and Ari Ne'eman yesterday.  Hartmann takes Scarborough to task for his recent comments suggesting that accused shooter James Holmes is autistic, but the discussion went much further and could serve as an excellent introduction to basic concepts in neurodiversity.

Elk is a journalist for In These Times who believes that it is important for successful people like himself to be open about their autism. He says that autistic people are already isolated, and that  comments linking us to violence will make us more isolated.  Research does not show any connection between autism and the sort of violence Holmes is accused of. 

Ne'eman is the president of the Autistic Self Advocacy Network and the first ever autistic presidential appointee.  He points out that this is not an issue of political correctness, but one of prejudice. 

Both discuss Autism Speaks.  Elk shares my opinion that it has a lot in common with Komen for the Cure. Ne'eman talks about research priorities and the need for a discussion about autism that acknowledges both strengths and challenges.

Essential.  I would have liked to have heard from a woman as well, but that's my only criticism.

Click here to watch.

Updated to make the headline more accurate.  There is an ASAN action alert here.

From the Autistic Self Advocacy Network:

ASAN expresses concern regarding new HHS report on autism research

New report uses “creative accounting” to reflect increase in services-research; confirms persistent under-representation of adult needs

Washington, DC – July, 10^th, 2012 – This morning, the Office of Autism Research Coordination (OARC) within the federal Department of Health and Human Services (HHS) released a new report analyzing the allocation of autism research funds in the public and private sector. The Autistic Self Advocacy Network, the leading national advocacy organization run by and for adults on the autism spectrum, issued a statement expressing concern regarding the low percentage of funds allocated to the needs of adults and a change in reporting methodology utilized to report a dramatic growth in the percentage of funding reported to service-provision research, despite a lack of comparable real funding increases in this area.

“This report confirms that the national autism research agenda is dangerously out of step with the priorities of Autistic people and our families,” said Ari Ne’eman, President of the Autistic Self Advocacy Network and outgoing member of the Inter-Agency Autism Coordinating Committee (IACC), “Furthermore, the report’s increase from 3% to 16% in the percentage of funding allocated to services-research is almost entirely attributable to OARC’s choice to count pre-existing funding streams around practitioner training as research. This kind of creative accounting presents the impression of research progress where little exists.”

The new report – the 2010 IACC ASD Research Portfolio Analysis – found $408 million was spent across 1,367 autism research projects in 2010. Of that, only 2% went to research into the needs of adults. While OARC reported that 16% of the research agenda funded projects relating to the service provision needs of children and adults on the autism spectrum, 74% of OARC’s reported services-funding could be attributed to pre-existing practitioner training programs. These programs, such as the Health Resources Services Administration’s (HRSA) Leadership Education in Neurodevelopmental Disorders (LEND) are long-standing and have never before been considered research. In 2009, OARC reported only 3% of the research agenda going into services and less than 1% going towards the needs of adults.

“It is concerning that the research funding community persists in paying so little attention to the developmental period those of us on the autism spectrum will spend the majority of our lives in,” said ASAN Board Vice Chair and incoming IACC member Scott Robertson, “As a new member of the IACC, I intend to work to raise the profile of Autistic adult and service-provision related priorities. The Autistic community deserves real change.”

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities.

With more than 90 exhibitors and a speech from Autistic Self Advocacy Network president Ari Ne'eman, The Autism Show is showing London what autistic people can do:

"If society wants autistic people to play a part, they have to let us be who we are in all areas of life," said Steve Barker, a concert flautist who was diagnosed with autism late in life and also has Tourette's Syndrome. "Not just where it's convenient."

Mr Barker, whose orchestra is resident at the Sage concert hall in Gateshead, is speaking at the event on the link between autism and creativity. Yesterday he demonstrated how the obsession with structure and pattern that goes into creating works of art, in particular music, was mirrored in the workings of the autistic mind. "I feel fine when I'm on the stage. Society is willing to tolerate me on a stage. It's when I come off the stage that it's not so easy, he said. "If society is willing to take typical people with all their good and bad points, then why not the atypical people too?"