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The time is NOW–please give the IACC input on the Strategic Plan

6 Jul

As many readers here may recall, I spent a few years as a public member to the Interagency Autism Coordinating Committee (IACC). The IACC is mandated by the same law that commits the government to funding autism research. The most important thing the IACC does is draft the Strategic Plan. This is the how the autism communities tell the government and other funding agencies what research projects we want performed. That Plan is up for a major revision. Something that hasn’t happened since before I was on the IACC. Now is when the real work of the IACC is going to happen.

And they want your feedback. They need your feedback. There is a website open now to submit feedback: Request for Public Comments – 2016 IACC Strategic Plan. I list the questions below so you can prepare–but go to that website and give feedback. Do it now. Don’t put it off and possibly miss the chance to give feedback.

Maybe you want to give feedback on only one topic. Great. Maybe you want to give a lot of feedback. Great. But do it. Do it now.


Do you want a major focus on, say, supporting high support adults? Early intervention? Better education supports and strategies for older students?

We aren’t talking small amounts of money. Here’s a figure from the IACC’s Portfolio Analysis from 2012. That’s over $300,000,000.00 spent in one year. Three hundred million plus dollars.

Autism Expenses 2012

Is that the breakdown you want to see? Is that what will make a difference in your life, or the life of someone you care about?

It isn’t what I want or need. Research takes time to impact real life. I want autistic adults–especially those with high support needs–to have a better life. I’d like it NOW, but I need it by the time my kid ages out of school. In the pie chart above, “lifespan issues” account for 1% of the total funding. Lifespan issues is the term for issues involving adults.


That has to change. And I’ll give that feedback, and more.

You may have other areas, or other specific projects you want to see advances in. Let the IACC know. Let them know NOW. Request for Public Comments – 2016 IACC Strategic Plan

Here are the questions you will see on the website.

Question 1: When Should I Be Concerned? (Diagnosis and Screening)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 1. Topics include: diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups, disparities in diagnosis

Question 2: How can I understand what is happening? (Biology of ASD)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 2. Topics include: molecular biology and neuroscience, developmental biology, cognitive and behavioral biology, genetic syndromes related to ASD, sex differences, immune and metabolic aspects, and co-occurring conditions in ASD

Question 3: What Caused This to Happen and Can it be Prevented? (Risk Factors)

Please identify what you cosnider the most important priorities and gaps in research, services and policy for Question 3. Topics include: genetic and environmental risk factors, gene-environment interactions, and the potential role of epigentics and the microbiome

Question 4: How can I understand what is happeing? (Treatments and Interventions)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 4. Topics include: behavioral, medical/pharmacologic, educational, techonology-based, and complementary/integrative interventions.

Question 5. Where can I turn for services? (Services)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 5. Topics include: service access and utilization, service systems, education, family well-being, efficacious and cost-effective service delivery, health and safety issues affecting children, and community inclusion.

Question 6. What does the future hold, especially for adults? (Lifespan Issues).

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 6. Topics include: health and quality of life across the lifespan, aging, transition, and adult services, including eduction, vocational training, employment, housing, financial planning and community integration.

Question 7. What other infrastructure and surveillance needs must be met? (Lifespan Issues)

Please identify what you consider the most important priorities and gaps in research, services and policy for Question 7. Topics include: research infrastructure needs, ASD surveillance research, research workforce development, dissemination of research information, and strengthening collaboration.

Go to the website. Request for Public Comments – 2016 IACC Strategic Plan. Give them feedback. Did I mention you should do it now and not wait?

By Matt Carey

California budget battle to restore disability services–WE WON!

17 Mar

My apologies for not posting this right away. For those who have been following the battle in the California Legislature to restore some of the lost funding to disability services, WE WON!

OK, we started out trying for a 10% increase and got 7.5%, but this is a heck of lot better than when we got nothing in the new budget.

The ARC and United Cerebral Palsy California Collaboration spent a lot of time getting support for this and deserve a lot of thanks from our community. The letter announcing the final decision is below.

Dear Friends,
The Assembly and Senate just passed the bills to save our community services. The bills now to Governor Brown for his signature, which is certain.
As Assembly Speaker Toni Atkins said, “The passionate advocates for this funding should be proud of their persistence” – two years of persistent, vocal, united community advocacy.
The bipartisan vote on the key bill to provide the funding was 28-11 in the Senate and 60-16 in the Assembly. To find out how your assemblymember voted, clickhere. The Senate vote isn’t up yet, but the 28 “aye” votes were all the Democrats and two Republicans, Senator Huff and Senator Cannella.
If your senator and/or assembly member voted “aye,” please call them now to thank them. Click here to find them. If you talked to someone in their office before, call that person and let them know we don’t just complain, we thank them when they deserve it. And save their name and number; there will be more fights.  
If your senator or assembly member is among those Republicans who for one reason or another felt they couldn’t vote for it, don’t hold it against them! The Republicans’ vocal support for months was a big reason why we got this far. And if they had tried to stop their fellow Republicans from voting “aye” today, they probably could have stopped them, which would have blocked the bill — but they didn’t.
This isn’t the last fight. As Assemblymember Mark Stone said to all his colleagues who voted for the package, “Stay with us next year, the year after that, the year after that, to protect this particularly vulnerable community.”
(Actually, we can’t even wait till next year. Today’s action will, for the most part, stop the deterioration of our community services, but we have some gaps to try to fill in the budget that will get adopted in June. Stay tuned.)
But for now, it’s time to celebrate.
And thank you for your advocacy.
Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814


Matt Carey

California Legislative Action Alert: The Vote to Save Our Services is Set for Monday!

26 Feb

The California developmental disabilities community has been fighting a long and hard fight to regain lost ground in support for services. Basically, the budgets keep leaving us out and with inflation we keep losing ground.

The budget support is coming up for vote on Monday. I know I’ve asked many times for calls, faxes, emails, etc., but with luck this is the last time. Make it count–make your needs heard. Details are below in a letter from Tony Anderson of the Arc California and the Lanterman Coalition.

The Vote to Save Our Services is Set for Monday!
Dear Friends,
From everything we hear, we’re going to win in both the Senate and Assembly on Monday! We appear to have the two-thirds, bipartisan majorities we need to pass the compromise agreement to save our community services.
But just be safe, we’re asking everyone to make two more calls before noonMonday – one to your state senator, and one to your assembly member. Click here to find who they are.
As usual, if you already have talked to someone in your senator’s or local office, call him or her. Otherwise, call their Capitol office in Sacramento.
The message is even simpler than usual – just give them your name and address, and ask them to please vote yes on ABx2-1 and SBx2-2 to save ourt developmental services. There’s no need for confrontation at this time, we just need the policymakers to know we are watching close and we want their vote on Monday.
As we acknowledged earlier, the agreement doesn’t achieve everything needed – our community is going to need to stay united to fight for the rest iof what we need in the months and years ahead — but it is a critically important step to provide relief and recovery.
Please make two calls before noon Monday.
And thank you for your advocacy!
Tony Anderson
Executive Director, The Arc California and
Chair, The Lanterman Coalition
1225 Eighth Street, Suite 350, Sacramento, CA 95814


The IACC will meet in January: submit comments now!

14 Dec

Below is a meeting announcement for the U.S. Interagency Autism Coordinating Committee (IACC).

Now would be a great time to submit a written comment to

As a former member of the IACC I can tell you that comments are read and considered seriously.  I can also tell you that the groups pushing the idea that vaccines cause autism do a good job of submitting comments.  There’s a lot of work to be done with the new IACC.  The Strategic Plan needs to be rewritten.  Now is when your input can have a big impact.

Meeting of the Interagency Autism CoordinatingCommittee

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 12, 2016 from 9:00 a.m. to 5:00 p.m. ET at the National Institutes of Health, 31 Center Drive, Building 31, C Wing, 6thFloor, Conference Room 6, Bethesda, MD 20892. Registration will begin at 8:00a.m. The meeting will also be available by live webcast and conference call.

Agenda: To discuss business, updates and issues related to ASD research and services activities. The committee will discuss the next update of the IACC Strategic Plan.

Meeting location:
National Institutes of Health

31 Center Drive

Building 31, C Wing, 6th Floor, Conference Room 6

Bethesda, MD 2089

Nearest Metro stop:

Medical Center Drive Metro Station – Red Line


In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit. Also as a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended.



The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Online registration will be opening shortly. Please check the IACC website for updates.


Public Comment – Deadlines:

Notification of intent to present oral comments: Monday, January 4th by 5:00p.m. ET

Submission of written/electronic statement for oral comments: Tuesday, January 5th by 5:00p.m. ET

Submission of written comments: Tuesday, January 5th by 5:00p.m. ET


Remote Access:

The meeting will be remotely accessible by videocast  ( and conference call.  Members of the public who participate using the conference call phone number will be in listen-only mode.
Conference Call Access
USA/Canada Phone Number: 800-988-9744

Access code: 3700810


Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed below at least five days prior to the meeting. If you experience any technical problems with the conference call, please e-mail at or call the IACC Technical Support Help Line at 415-652-8023.


Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about prior IACC events.


Contact Person for this meeting is:


Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 6182A
Rockville, MD 20852
Phone: 301-443-6040

HHS Announces Appointment of New Membership and New Chair for the Interagency Autism Coordinating Committee

28 Oct

The Secretary of Health and Human Services has selected and seated a new Interagency Autism Coordinating Committee. The press release is below.

HHS Announces Appointment of New Membership and New Chair for the Interagency Autism
Coordinating Committee

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new
and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under
the Autism CARES Act. After an open call for nominations for members of the public to serve on the
committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of
individuals to provide her with advice to advance research, strengthen services, and increase
opportunities for people on the autism spectrum. The public member appointees include three adults
on the autism spectrum, several family members of children and adults on the autism spectrum,
clinicians, researchers, and leaders of national autism research, services, and advocacy organizations.
Many of the appointed individuals serve dual roles, dedicating their professional careers to helping
people on the autism spectrum because of their personal experiences with autism spectrum disorder
(ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville,

In addition to the new public members, the IACC will have a new chair when it reconvenes. Dr. Thomas
Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the
committee for more than a decade, announced his planned departure for Google Life Sciences in at the
end of October 2015. Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1,
has been appointed to serve as the IACC Chair over the next year.

Autism research, services, and advocacy organizations represented by new and returning appointees to
the committee include: Association of University Centers on Disabilities, Arc of the United States, Autism
Science Foundation, Autism Speaks, Autism Society, Simons Foundation, and Autistic Self Advocacy
Network. Federal departments and agencies represented on the committee include several agencies
within HHS: Administration for Children and Families, Administration for Community Living, Agency for
Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare &
Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, and
National Institutes of Health; as well as Department of Education, Environmental Protection Agency, and
Department of Defense .

The responsibilities of the committee include annually updating the IACC Strategic Plan for ASD,
preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and
providing guidance to the HHS Secretary on matters related to ASD.
The public members appointed by the Secretary to serve on the renewed IACC are:

David Amaral, Ph.D.
Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral
Sciences and Neuroscience at the University of California, Davis. He is also Chair of the Beneto
Foundation, Founding Research Director of the UC Davis MIND (Medical Investigation of
Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts
research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the
University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.

James Ball, Ed.D., B.C.B.A.-D.
Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior
Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has worked in the autism field for
more than 25 years, providing educational, employment, and residential services to children and adults
affected with autism. He is the Executive Director of the Autism Society’s (AS) Board of Directors. He
received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.

Samantha Crane, J.D.
Ms. Samantha Crane is a new public member of the IACC. She is Legal Director and Director of Public
Policy at the Autistic Self Advocacy Network (ASAN) and an autistic self-advocate. Ms. Crane previously
served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to
community integration as established by the Supreme Court in Olmstead v. L.C.. Ms. Crane holds a B.A.
from Swarthmore College, with high honors, in Psychology, and she received her J.D. degree from
Harvard Law School.

Geraldine Dawson, Ph.D.
Dr. Geraldine Dawson has served on the IACC as a public member since 2012. She is a Professor of
Psychiatry and Behavioral Sciences in the Duke School of Medicine and a faculty member of the Duke
Institute for Brain Sciences. Dr. Dawson also is Director of the Duke Center for Autism and Brain
Development and President of the International Society for Autism Research. Dr. Dawson is a licensed
clinical psychologist and researcher who has published extensively on ASD, focusing on early detection,
intervention, and early brain development. She received her Ph.D. in Developmental Psychology with a
minor in Child Clinical Psychology from the University of Washington and was a postdoctoral fellow at
the University of California at Los Angeles.

Amy Goodman, M.A.
Ms. Amy Goodman is a new public member of the IACC. She is the Director of the Arc of the United
States’ Autism NOW Resource and Information Center, which serves the needs of individuals with
autism and their families. She is a self-advocate for individuals on the autism spectrum and holds a
master’s degree in special education from Marshall University in West Virginia.

Shannon Haworth, M.A.
Ms. Shannon Haworth is a new public member of the IACC. She is the Public Health Program Manager
for the Public Health team at Association of University Centers on Disabilities (AUCD) and a parent of a
child on the autism spectrum. She has a master’s degree in Applied Behavior Analysis and a graduate
certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate
Certificate in Disability Leadership from Virginia Commonwealth University, is currently a doctoral
candidate (DrPH) studying Public Health at Walden University, and is a certified Early Intervention
Specialist for the state of Virginia.

David Mandell, Sc.D.
Dr. David Mandell has served on the IACC as a public member since 2012. He is an Associate Professor of
Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. He is a health services
researcher and psychiatric epidemiologist whose work focuses on identifying the best ways to organize,
finance and deliver services to children with autism and other psychiatric and developmental disabilities.
Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science
from the Johns Hopkins School of Hygiene and Public Health.

Brian Parnell, M.S.W., C.S.W.
Mr. Brian Parnell is a new public member of the IACC. He has led a distinguished career in child welfare
and disabilities services and as an administrator of public and nonprofit agencies, having supervised and
managed social service programs for more than 20 years. Mr. Parnell currently works at the Utah
Division of Services for People with Disabilities, Department of Human Services, and helped develop
Utah’s Medicaid Autism Waiver program. Mr. Parnell is a parent of seven children, three of whom are
on the autism spectrum.

Kevin Pelphrey, Ph.D.
Dr. Kevin Pelphrey is a new public member of the IACC. He is the Harris Professor in the Child Study
Center and Professor of Psychology at Yale University and Director of the Yale Center for Translational
Developmental Neuroscience. He also is the father of two children on the autism spectrum. Dr.
Pelphrey’s research focuses on the development of brain mechanisms for social cognition in children
with and without ASD. He also is the Principal Investigator for a federally-funded multisite Autism Center
for Excellence, “Multimodal Developmental Neurogenetics of Females with ASD.” Dr. Pelphrey received
his Ph.D. in Psychology from the University of North Carolina at Chapel Hill.

Edlyn Peña, Ph.D.
Dr. Edlyn Peña is a new public member of the IACC. She is an Assistant Professor of Higher Education
Leadership at California Lutheran University (CLU) and is a parent of a child on the autism spectrum. Dr.
Peña’s research focuses on social justice issues for ethnic/racial minorities and students with autism and
other developmental disabilities in higher education. She earned her Ph.D. in Education with a
concentration in Higher Education from the University of Southern California.

Louis Reichardt, Ph.D.
Dr. Louis Reichardt is a new member of the IACC. He is the Director of the Simons Foundation Autism
Research Initiative (SFARI), whose goal is to improve the understanding, diagnosis, and treatment of ASD
by funding innovative, high quality research. Prior to this, he was a Professor of Biochemistry and
Biophysics at the University of California, San Francisco, where he directed its neuroscience graduate
program and Herbert W. Boyer Program in Biological Sciences. His research has focused on
neurotrophins, a family of proteins that play a key role in brain development and function. Dr. Reichardt
was a Fulbright scholar and earned his undergraduate degree from Harvard University and a Ph.D. in
Biochemistry from Stanford University.

Robert Ring, Ph.D.
Dr. Robert Ring has served on the IACC as a public member since 2014. He is the Chief Science Officer
(CSO) for Autism Speaks, the largest autism science and advocacy organization in the U.S. Dr. Ring is
responsible for leading the science program at Autism Speaks, which features a diverse portfolio of
research investments targeting medical research on the underlying biology of ASD, diagnosis, treatment,
etiology, public health, and innovative technologies. Dr. Ring holds adjunct faculty appointments in the
Department of Psychiatry at Mount Sinai School of Medicine (New York) and the Department of
Pharmacology and Physiology at Drexel University College of Medicine (Philadelphia). He holds a Ph.D. in
Molecular Neurobiology from City of Hope National Medical Center in Southern California.

John Elder Robison
Mr. John Elder Robison has served on the IACC as a public member since 2012. He is the Neurodiversity
Scholar in Residence at the College of William & Mary in Williamsburg, Virginia, where he teaches
courses on neurodiversity and living with autism. He is an autistic adult who is best known for working
to increase public understanding of autism, and he is the author of several popular books about living
life with autism, including Look Me in the Eye, My Life with Asperger’s, Be Different: Adventures of a
Free-Range Aspergian, and Raising Cubby.

Alison Singer, M.B.A.
Ms. Alison Singer has served on the IACC as a public member since 2007. She is Co-Founder and
President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to
support autism research by providing funding and other assistance to scientists and organizations
conducting, facilitating, publicizing, and disseminating autism research. Ms. Singer is the mother of a
daughter with autism and legal guardian of her adult brother with autism. Ms. Singer graduated magna
cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business

Julie Lounds Taylor, Ph.D.
Dr. Julie Lounds Taylor is a new public member of the IACC. Dr. Taylor is an assistant professor of
Pediatrics and Special Education at Vanderbilt University and an Investigator at the Vanderbilt Kennedy
Center. Her research focuses on factors that promote a positive transition to adulthood for individuals
with ASD and their families, as well as the impact of having a sibling with an intellectual or
developmental disability. She has published research on a variety of autism and disability servicesrelated
issues, including sex and gender differences, peer victimization, transition planning, secondary
education and vocational training, employment, and daily life skills for people on the autism spectrum.
Dr. Taylor earned her Ph.D. in developmental psychology at the University of Notre Dame.


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 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 adults on the autism spectrum, parents and family members of individuals on the autism
spectrum, advocates, researchers, providers, 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:

Secretary Burwell it is beyond unacceptable that there is no seated IACC

24 Oct

In the U.S. we have a promise from our government to focus attention on autism and to include community participation in that effort. There is a law in fact (Public Law No: 113-157) although you may think of it as the Autism CARES Act or the previous bills (the Combating Autism Act and the Combating Autism Reauthorization Act).

That law stipulates that the Secretary of Health and Human Services shall appoint a committee:

Establishment.–The Secretary shall establish a committee, to be known as the `Interagency Autism Coordinating Committee’ (in this section referred to as the `Committee’), to coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder.

This Committee, the IACC, has specific annual deliverables such as a Strategic Plan for autism research and an update of advances in autism research. The Committee is required to include non Federal Government members including autistics, parents and members of large non-government autism organizations. Regular meetings are to be held and public input solicited.

And none of this is happening.

With the new law required more from the government. For example, a report on autistics transitioning out of school. While the law doesn’t require direct IACC input in this, that would be the natural way to bring public input into that report (and to make sure that report is, indeed, being produced). Would you like to see that the report includes the needs of students transitioning to high support living placements? Or those who are in need of job support? Would you like to know that medical issues are being addressed? Would you like to have your voice heard at all in this process?

Well, as of now, it isn’t happening.

And there is no reason for that.

Let me repeat this: there is NO REASON that an IACC isn’t in place right now. And it was not Congress’ intent that there be a gap in IACC activity when they drafted this law. Consider this paragraph from the House report that was produced with the bill. The Congressional Committee that drafted the bill stated:

The Committee appreciates the diverse makeup of IACC, and would like the panel to continue to represent the diversity within the autism community and remain a place where all viewpoints can be heard. Current members include parents and legal guardians, individuals with an autism diagnosis, advocacy organizations, and medical researchers. The Committee believes that these groups should continue to be represented. After previous reauthorizations of the Combating Autism Act, IACC has been dissolved and reconstituted. The Committee believes that this is unproductive and disruptive, and would like IACC to remain active, as the changes in this bill are instituted to ensure continuity.

Let’s get a little into the details here. The previous IACC was dissolved at the end of September, 2014. This is the date stipulated in the law as enacted in the Combating Autism Reauthorization Act (CARA). All well and good except for one very important point: the provisions under CARA were superseded by Autism CARES Act before the sunset of the IACC.

In other words, the law as in place in September 2014 did not call for the IACC to be disbanded. I will state that I was the only member of the IACC to voice opposition to being disbanded. The intent and the wording of the law was clear to me: there was no reason for us to disband.

Even if I am completely wrong about that, there is no reason why a new Committee has not been formed. Consider the last time an IACC was dissolved and reformed.

Committee dissolved in September of 2011. The law in place at the time stipulated this. The reauthorization was signed into law the next day.

The new committee (of which I was a member) was announced at the end of March 2012. Yes, six months passed without a committee being in place.

The new committee did not meet until July of 2012. Yes, over eight months after the previous IACC was dissolved. Consider that the previous full meeting was in July of 2011 and you see that a year had passed without a meeting.

That was unacceptable.

And that was nothing compared to the situation we have today. The last IACC was dissolved at the end of September 2014. Over a year ago. And the last full committee meeting was in July of 2014. If a new IACC were announced today, given the time that it takes to organize meetings, we wouldn’t likely see a new Committee meet until February of 2016 at the earliest.

At best, we’ve lost about 2 years. At best.

The Strategic Plan that is in place today is outdated. The goals and strategies outlined in it have deadlines that have already passed. No annual autism research updates have been provided to Congress for 2014 or 2015. No advice has been provided to the Secretary.

Public input has not been heard by decision makers who are members of the IACC. And that is one of the greatest losses.

And now consider this: Autism CARES is an example of a “single disease” bill. Leaving aside the term disease, it’s worth noting that this sort of legislation is quite unpopular now in Congress. As a community we are lucky that we have this in place to focus federal attention and funding on autism. Congress promised funding and asked for some small things in return: a committee and annual reports from that committee.

I worry that by not seating a new committee we endanger the chances for a future re-authorization. If the Secretary (and we as a community) don’t seem to care about the existence of the Committee, what message is being sent to Congress?

In case you are wondering how valuable the IACC is–the IACC has acted as a model for other advocacy communities in terms of providing for public/federal partnership in crafting Federal strategies. There a many groups that would gladly take on an IACC type committee for themselves.

The IACC is a part of the framework that Congress promised to our communities. Promised and legislated. As I say above, it is beyond unacceptable that no Committee is currently in place.

By Matt Carey

SafeMinds: why won’t you tell your membership about the vaccine safety study you funded? Perhaps because it says vaccines are safe?

28 Aug

Earlier this year a paper was published on vaccine safety: Examination of the Safety of Pediatric Vaccine Schedules in a Non-Human Primate Model: Assessments of Neurodevelopment, Learning, and Social Behavior. This was a followup study to earlier pilot studies that got a lot of attention in the “vaccines-cause-autism” groups (Delayed acquisition of neonatal reflexes in newborn primates receiving a thimerosal-containing hepatitis B vaccine: influence of gestational age and birth weight and Influence of pediatric vaccines on amygdala growth and opioid ligand binding in rhesus macaque infants: a pilot study.)

It is worth noting that the pilot studies didn’t link vaccines to autism. They did make claims that some early reflexes were delayed in the monkeys given thimerosal containing vaccines. If you see someone talking about “root” or “snout” or “suck” reflexes in a vaccine discussion, they are referring to the studies above. These were pilot studies–small preliminary studies to see if it is worth launching a larger study. As such the results should have been taken with caution. But caution is not what groups like SafeMinds (or any of the groups that promote the failed vaccine-autism link) are known for. Inflating any scrap of evidence that can support their political point of view, that’s what they are known for.

SafeMinds made a big deal out of the early studies. Mark Blaxill (then of SafeMinds) called the study a “blockbuster” in a four thousand word analysis. That’s a lot of space to devote considering the full study was eight thousand words. And, as noted already, preliminary. But politics is politics.

Now, an intellectually honest person, or group, would watch for the followup study and report on it no matter the result. Because, let’s face it, if you are going to spend 4000 words overstating the importance of a study, scaring people and instilling them with guilt and pain over their child’s disability, you have a responsibility to do a follow up.

If you are intellectually honest.

So, as noted above, the follow up study was published. It was published in April. Four months ago. And I don’t see anything from Mr. Blaxill on the Age of Autism blog (where he posted his “blockbuster” article) or at the SafeMinds website on the followup study. SafeMinds has their own blog, and if you search it for, say “snout”, you get this article (Ground-Breaking Monkey Study: Mercury-Containing Hepatitis B Vaccine Causes Brain Damage) on the pilot study, calling it “groundbreaking” and claiming that it demonstrates that the thimerosal containing HepB vaccine causes brain damage.

Very strong words. Words which, if overblown, are very damaging. Imagine going through life as a parent thinking that you agreed to a vaccine and that caused brain damage to your child. Now imagine that the evidence you used to draw that conclusion was (a) not strong to begin with and (b) now refuted.

Wouldn’t you want to know the truth? Wouldn’t you expect the people and the organizations that convinced you of this falshood to seek you out and correct their mistake?

And this is why people don’t hold Mr. Blaxill or SafeMinds in high regard. They are quick to scare but don’t have the courage to admit they were wrong. Courage isn’t standing up and saying unpopular truths. Courage is standing up and admitting that your “unpopular truth” was, in fact, not the truth at all.

Now, why pick on SafeMinds in specific here? A lot of people and groups jumped on the pilot study and spread a lot of fear. Check out the footnotes of the study.

This work was supported by the Ted Lindsay Foundation, SafeMinds, National Autism Association, the Vernick family, and the Johnson family

SafeMinds helped fund the new study. The one they are ignoring. They were likely aware of the results before they were published. But no word.

I expect more from decent advocacy organizations. But I am not surprised with SafeMinds, nor Mark Blaxill.

Yes, the National Autism Association did too and they need to step up as well (a point I hope to make in a later article).

How about the Johnson Family? Well, the Johnson Center stepped up and put out a press release New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Neurodevelopment and Behavior in Infant Primates. (all SafeMinds, the Age of Autism and the National Autism Association needs to do as a start is publish the press release).

Here’s the last sentence of the press release, quoting the lead researcher: “Despite these limitations, the data in this primate study overwhelmingly provides support for the safety of pediatric vaccines”

It would take a lot of courage for SafeMinds and Mark Blaxill to publicize such a statement. More than they have.

By Matt Carey