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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,
Maryland.

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
School.

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: www.iacc.hhs.gov.

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

More California Advicacy Needed: take 20 seconds to protect services

22 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

Yes, this is a repeat of an article posted over the weekend. But weekends get low traffic and we need to keep this effort moving forward. And I am adding the message I sent my legislators below.

As a citizen (born here!) of California, I made a promise to disabled Californians that I would help support them. I do this with my taxes and have for years.

Now that I have a disabled child, I see that the level of support we offer has been low and recently has been diminishing.

We Californians made a promise, we need to keep it.

I am extremely disappointed with the Legislature for caving in to Governor Brown and passing a budget with not one dime to stop the deterioration of our developmental services.

Please do much, much better in the special legislative session. Give the developmental disability community the emergency 10% across-the-board funding increase we need starting NOW. Anything less won’t stop the service system from collapsing, just slow it down.

And please, don’t pass any more unfunded mandates on our community service providers. When you vote on Senate Bill 3 to raise the minimum wage and any other bills to make our providers spend more, insist that the state cover the full costs to prevent the loss of ever more of our services.

The people who take the front lines in supporting our disabled have one of the most demanding jobs in our State. I started out on the minimum wage and know the limitations of it. I’m support an increase.

Be compassionate with the minimum wage, but understand that we have to realize that this will impact our most vulnerable citizens.

Respectfully Submitted,

Matthew J. Carey

More California Advicacy Needed: take 20 seconds to protect services

21 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed 

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

Will a new IACC be seated soon?

22 Mar

The United States has a committee enacted by law called the Interagency Autism Coordinating Committee or IACC. The IACC describes itself on its web page as:

The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

The IACC mission is to:

Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.

Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.

Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services.
IACC meetings are open to the public and include presentations and discussions on a variety of topics, including activities and projects of the IACC, recent advances in science and autism policy issues. A portion of each meeting is reserved for public comment. A summary of each meeting is posted on the meetings & events page.

The thing is, the IACC hasn’t had a meeting since last September, and that wasn’t even a full committee meeting. They haven’t met because the committee was dissolved since the law that created that generation of the IACC ended. A new law was passed and enacted before the previous law hit its sunset date, and so the activities of the IACC will continue through 2019. A nomination process was opened to reconstitute the committee last fall.

Consider the events surrounding the formation of the recently ended IACC (the third committee if you are keeping count). We (I was a member) were formed at the end of March 2012 after a hiatus following the sunset of the 2nd committee in September of 2011. While the press release is dated the end of March, my recollection is that the announcement came April 1st.

So, here we are, nearing the end of March following the sunset of the previous committee in September of last year.

Nothing says that they have to follow the same pattern, but it would be reasonable to expect a new committee to be announced soon. As in April 1st, the start of Autism Acceptance Month (aka Autism Awareness Month). Expect a lot of press releases around April 1 and 2 (World Autism Awareness Day) for various autism related activities, mostly centering around the “awareness” month.

This said, I suspect the speculation will soon turn to who will be on the new (4th) Committee. It’s very safe and very appropriate to say that organizations which fund a lot of research will have representation on the Committee. Thus, someone from Simons Foundation (the largest private funder of autism related research), Autism Speaks and Autism Science Foundation. Someone forwarded me a link stating that the representative from SafeMinds was not seeking reappointment, but that doesn’t mean another member of SafeMinds couldn’t be appointed.

While the Autism Society of America doesn’t fund much research, they are a large member organization and someone from ASA has been on the IACC for at least the past two incarnations.

The Autistic Self Advocacy Network, ASAN, had a member on each of the last two committees. My understanding is that the ASAN representative to the last committee (Scott Robertson) landed a position in government which posed a conflict and he had to resign the last IACC. He was not replaced with a self advocate, ASAN member or not. So, I would not be surprised if there is not an ASAN member on the next committee. I also wouldn’t be surprised if an ASAN member is on the next committee. (How’s that for hedging my bets)

The law which calls for the IACC requires self-advocate representation. Scott Robertson, Noah Britton and John Elder Robison were on the previous committee and all were excellent. Noah did a great deal of work in writing subsections of the IACC strategic plan. John is likely the most vocal of any member on the Committee (aside from Tom Insel, the chair) and is pretty much willing to take on any topic, and able to speak to it well.

It was recently pointed out to me that the self-advocates so far have all been Caucasian males. While I appreciate the contributions of John, Scott and Noah, I would greatly appreciate seeing more diversity in this area.

I won’t go through all the rest of the public members, but I will bring up a few. David Mandell is a researcher I’ve had a great deal of respect for since pretty much I started reading autism research. He has a great deal of expertise on services, which is an area that will be of heightened importance for the next Committee. In the area of services, Paul Shattuck would be an excellent new addition. Both Paul and David ask questions few others ask–focusing attention on populations that just don’t get the attention that they should. Either or both would be an asset to the next Committee.

Geri Dawson was on the previous IACC, starting as a member of Autism Speaks. She is incredibly knowledgeable about autism research, especially what is current (and in the pipeline).

One person I would like to see return is Sally Burton-Hoyle. I wrote about a presentation she gave to the IACC last year. If you watch her presentation (it’s on the teen transition and supporting autistics in college, something she knows a great deal about as that’s her job) you will see that she’s also quite on target as someone to contribute for the new services focus of the IACC. She also represents a constituency we don’t speak to enough: adults who are not self-advocates. She had an adult autistic brother. Sally Burton-Hoyle and Alison Singer were the two people I am aware of who represented non self-advocate adults (Alison has an autistic brother).

I felt strongly that the IACC should not have been disbanded but continued with additional members added to meet the new mandates (and, also, allowing for those members who wanted to be done to be replaced). The new law was in effect in time to allow for the committee to continue. The House Report (from the Energy and Commerce Committee) 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.

But that’s in a report, not the law. While I agree with the Report, it might have helped if Congress had included this language in the bill. This language together with appropriations sufficient to staff the Office of Autism Research Coordination to a level that they can support the IACC and the other duties OARC has.

There’s a lot to do for the next Committee. There is a mandate to produce a services plan. The Stategic Plan for Autism Research needs to be updated. Besides the lost time in dissolving and reconstituting the IACC, the previous Committee was experienced and could have started work immediately.

Again, I’m expecting the next Committee to be announced in about a week and a half (April 1 or 2). I had hope it wouldn’t take this long, and I have even more hope that it won’t take longer than that. There’s a lot to be done.


By Matt Carey

Over $20k in donations to Congressman Posey and now people expect another hearing

7 Feb

Remember a few years back when Representative Darrell Issa held autism hearings? One in 2012 and one in 2014. As chair of the House Committee on Oversight and Government Reform, he was apparently able to make that happen, even if he didn’t show up for the second hearing. It turned out that groups that promote the failed idea that vaccines caused an autism epidemic had done a fair bit of lobbying, including getting Andrew Wakefield (of all people) to meet with and dine with the one or more members of congress. And then there’s the fact that at least one activist in the vaccines-cause-autism cause had made rather significant ($40,000) donations to congressman Issa.

Even with the heavy lobbying and donations, neither Oversight hearing was quite what these groups wanted. The first only one of their advocates testified, and in the second hearing none. These lobbying groups did produce video clips of members of congress grilling members of the CDC, especially Congressman Posey reading questions and statements apparently prepared for him by these lobbyists. These video clips have been useful for these groups but, seriously, a full on congressional hearing to produce YouTube videos for the donors to the chairman? That’s the sort of wasted resources that Oversight is supposed to prevent, not create.

Last fall many of those pushing the idea of vaccine causation really wanted to use the leaks by CDC researcher William Thompson to get another congressional hearing. A hearing that would focus on vaccines (since the first two hearings held by Oversight did not). Or, to put it simply, one which could stay in their control. That didn’t happen, but that doesn’t mean people have given up hope for a hearing.

It has become clear over the past year that whatever influence these lobbying groups had gained with Representative Issa, that influence had waned. The second Oversight hearing included no public representatives and Mr. Issa was not even present. Further, fundraising efforts no longer focus on Mr. Issa.

Attention has shifted to Mr. Posey, a representative from Florida. A fundraiser was held for Mr. Posey last year.

A recent story claims that a new hearing is in the works. This time in House Science Committee. Coincidentally, Mr. Posey sits on the Science Committee. Mr. Posey has been a friend to the vaccines-cause-autism groups for some time, and sat in on the Oversight hearings. Last year’s fundraiser was an interesting event for many reasons. First, Mr. Posey was in a very safe race, so he wasn’t really in need of donations to win. Second, the people putting on the fundraiser were mostly (if not all) from outside of the Congressman’s district. Third, one of the primary people organizing the fundraiser was the same person who had donated about $40,000 to Congressman Issa.

Let’s take a look again at the people listed as donors for that fundraiser:

Jennifer Larson of the Canary Party and Health Freedom
Sallie Bernard of Safeminds and Autism Speaks
JB Handley of Generation Rescue
Tony Lyons of Shy[sic] Horse Publishing
Barry Segal of Focus Autism
Mark Blaxill of the Canary Party and Health Freedom
Dr. Gary Kompothecras
Teri Costigan

I went to the Federal Elections Commission website and OpenSecrets.org and checked for donations from these individuals to Congressman Posey.

Jennifer Larson, 3 donations for $5200 total in 2014

Sallie Bernard, $1000

JB Handley, $1000

Barry Segal, $2600

Mark Blaxill $5000

Gary Kompothecras and his wife, $5200

If Terri Costigan is Theresa Costigan, then here’s another $1000

I did not find donations from Mr. Lyons

That’s about $21,000.

Of course there could be more donations other than the people advertised before the event. For example, there are also two donations from a Mary Lang, totaling $5000. There is a Mary Lang from the same city who runs an autism school and who has spoken at the AutismOne parent convention (AutismOne promotes heavily the idea that autism and vaccines are linked).

If those donations are also part of this fundraising effort, that would bring the total accounted for so far to $26,000.

If you go to the story that is claiming a hearing is in the works, it does appear to be still in the “wishful thinking” stage. The article doesn’t give any recent quotes from Mr. Thompson and quotes a staffer for Congressman Posey as stating “We’re working with the Science Committee to get a hearing”.

Representative Posey is on the Science Committee and the Subcommittee on Oversight. And people interested in a Congressional hearing organized a fundraising event for the representative in an election year where he was an almost sure win. And collected over $20,000 in that event.

Are the fundraiser and hopes for a hearing connected? Or is it just a coincidence that people flew from all over the U.S. to attend a fundraiser dinner in Florida and later push for a hearing in that same Representative’s committee? Decide for yourself. I don’t see it as coincidence.

I find a few more points worth noting. First, Generation Rescue and the Age of Autism blog put out a call for people to show support for Representative Posey. The donation link given states that:

Federal law requires us to use our best efforts to collect and report the name, mailing address, occupation and name of employer for each individual who contributions exceed $200 in an election cycle

Records available on FEC.gov and OpenSecrets.org show donations as small as $25 per individual.

I don’t see a large influx of donations in the record for Mr. Posey. I don’t see donations from, say Jenny (Jennifer) McCarthy of Generation Rescue nor Candace McDonald, executive director for GR. I don’t see donations from the bloggers at the Age of Autism. Perhaps I missed them or perhaps they were too small to be recorded. Or perhaps there just wasn’t a large turnout. There isn’t a large number of donors from out of state around the time of the Age of Autism call. Out of state donors would indicate that a nationwide call had an effect.

I also didn’t see any indication that many people showed up for the fundraiser outside of the group noted in the pre-event publicity.

The last point I find interesting is this: Congressman Posey is still not a member of the Congressional Autism Caucus. Nor have I seen him act as a strong supporter of autism related legislation.


By Matt Carey

Sally Burton-Hoyle’s IACC presentation: Teen Transition

22 Dec

One member of the previous Interagency Autism Coordinating Committee (and I hope a member of the next IACC) is Sally Burton-Hoyle. Or to be more accurate, Prof. Sally-Burton Hoyle, as she teaches at Eastern Michigan University and holds the title Associate Professor. In the last full IACC meeting, Prof. Burton-Hoyle gave a presentation on the “Teen Transition”. I apologize that the closed captioning is not present in this video. One can find the video with the closed captioning at the NIH videocast website, here. Click on chapter 14 and you will go straight to her presentation.

She presents on the program to support autistics at Eastern Michigan University. The program seems like an excellent support system for autistics in college.

All to often, we in the autism communities seem to present our advocacy groups as primarily divided between adult self-advocates and parents of young kids with a very different set of challenges. And by this point in the article I suspect many people have put Prof. Burton-Hoyle in the category of “advocating for adult self-advocates”. And that would be a mistake. OK, sure, she is doing great work advocating for adults in college, but she is also the sister of an adult autistic who was not a self advocate. An adult who passed away early. And Prof. Burton-Hoyle brought that breadth of experience to the table at the IACC. And in my opinion that breadth of experience and breadth of advocacy is much needed on the IACC. There is a place for advocates with a more narrow focus, but with so few seats and such a varied autism community we need people on the IACC who will advocate for multiple sub-communities within the broader autism community.


By Matt Carey

Dan Aykroyd, still autistic after all these years

5 Dec

With all the recent hullabaloo about how celebrities being autistic somehow harms the autism community (if you don’t know what I’m talking about, check news sources for Jerry Seinfeld and autism), one counter example seems to be ignored: Dan Aykroyd.  Mr. Aykroyd is perhaps most famous for his movie Ghost Busters, but his credits are many (including my favorite, Elwood Blues of the Blues Brothers).  He’s a successful entertainer, and a diagnosed autistic.

Begs the question, why no backlash against him?

One can only speculate, so speculate I will.  First, Mr. Aykroyd’s “coming out” didn’t make such a public splash.  In my mind, that’s the most likely explanation for a lack of backlash.  People could see his statement as more of a threat.  Also, with more publicity, people know that their responses will be more widely read.  A second reason for the difference in response is that Mr. Aykroyd handled the topic much better than did Mr. Seinfeld.   Consider these two news stories:

In 2013 he was interviewed by the Daily Mail.  In ‘I have Asperger’s – one of my symptoms included being obsessed with ghosts’, Mr. Aykroyd responded to the question of what is his “worst illness” thus:

I was diagnosed with Tourette’s at 12. I had physical tics, nervousness and made grunting noises and it affected how outgoing I was. I had therapy which really worked and by 14 my symptoms eased. I also have Asperger’s but I can manage it. It wasn’t diagnosed until the early Eighties when my wife persuaded me to see a doctor. One of my symptoms included my obsession with ghosts and law enforcement — I carry around a police badge with me, for example. I became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the idea of my film Ghostbusters was born.

Dan Aykroyd: ‘My Harley-Davidson is a form of psychiatric therapy. You get on that and you don’t need a shrink’

My very mild Asperger’s has helped me creatively. I sometimes hear a voice and think: “That could be a character I could do.” Of course there are many different grades, right up to the autism spectrum, and I am nowhere near that. But I sympathise with children who have it.

Let’s do the compare and contrast with Mr. Aykroyd and Mr. Seinfeld.

1) Mr. Aykroyd has a diagnosis.  About 3 decades ago he was diagnosed.  Of course, back then Asperger syndrome wasn’t an “official diagnosis”.  But, of course Asperger’s work on autism goes back as far as Hans Kanner’s work.  Mr. Seinfeld doesn’t have (nor did he claim to have) a diagnosis.

2) Mr. Aykroyd was also diagnosed with Tourette syndrome.  At age 12.  So, having a neurlogical diagnosis early on gives more credence to his later-in-life autism (Asperger) diagnosis.

3) Mr. Aykroyd has acknowledged that his challenges are much less than most autistics. This is a big point.  Temple Grandin does the same thing, by the way.  As do pretty much every self-advocate I’ve ever encountered in real life or online.

So, yeah, Mr. Aykroyd and Mr. Seinfeld approached their public discussions of autism very differently.  And, as a result have received very different responses.

Leaving aside the lack of any “rage spirals” involved in Mr. Aykroyd’s revelation, what about the basic fact that he’s been essentially ignored?  Here we have an autistic, with comorbid Tourette syndrome, who is successful.  Who credits his autism as contributing to his success.

Why is he ignored?  Perhaps that question is asked and answered.  He’s successful and he credits his autism with contributing to his success.  That doesn’t fit into the narrative.  While Mr. Aykroyd is NLMK (not like my kid), he could be a hero for some in the autism community.  Why can’t we have autistic heroes?  Autistic people whom autistics and non-autistics can look up to and say, “Dang, s/he did well”?

The answer is we can have autistic heroes.  We can acknowledge successful autistics.   Because there is no one face of autism.  Autism can be Dan Aykroyd and be people who need extraordinary support so they don’t end up sedated or restrained in an emergency room.  Sometimes we talk about those who meet a more standard definition of successful. Sometime we talk about those with more extraordinary challenges.  And sometimes we talk about the entire spectrum in a single conversation.  That’s what it means to be part of such a varied community.

By Matt Carey

Disneyland and the Disability Access Service Card

2 Dec

When Disney announced that they were going to change how they handled services for disabled guests, I and many others were concerned. The old system was very informal and worked well, in my opinion.  It was just a piece of paper and you showed it to people at the line and they would help you by either putting you in a separate disability line or let you go to the exit and get in line there.  It made it possible to enjoy the park without waiting in long lines where the disabled person and, possibly, others in the line would have a much less than optimal experience.  While it didn’t guarantee short lines, in practice that’s they way it often worked.  So people who just can’t take Disneyland for long periods of time could get a “full day” in a few hours.  With Disney costing $90 for kids, $96 for those 10 and older, it’s a big deal if you can only be there for a few hours and most of that time is spent in line.  I could seriously see getting on one, maybe two major rides and that’s it.

But, sadly, informal systems can be gamed easily.  And that’s what happened.  See Rich Manhattan moms hire handicapped tour guides so kids can cut lines at Disney World for an example.  Or just read the title.

Shannon Rosa wrote about the new system over at The Thinking Person’s Guide to Autism as One Autistic Teen’s Disneyland Success Story.   She and Leo visited Disneyland a few weeks ago (Nov. 2014).  Also, there’s Disney DAS from a diary of a mom describing their trip in May to Walt Disney World.

Shannon mentioned in her article that they were about to change the disability access service again.  And by the time I went with my family, changes had taken place.

I’ll go into more detail below, but the main point in how the disability pass works is this: for rides where they have a fast-pass entrance, the ticket for the disabled person is the disability pass.  That ticket works much like a fast-pass.

So, here’s the “more detail” part:

Step 1: go to City Hall on Main Street (it’s too your left as you enter the park).  Bring your entire party and all the tickets.  I stood in line and called my family when I got to the front (that whole, not doing well with lines, thing).

Step 2: At City Hall they will take the picture(s) of the disabled person(s).  They will scan all the tickets.  You need to specify which ticket(s) belong to the disabled person(s).  They ask you to write that person’s name on the ticket. That ticket has to be used for most rides where he/she wants disability access.

You will also be given a white piece of paper with the terms and conditions for disability access.  You will be asked to sign a copy of these terms and conditions.  Keep your copy–it’s your disability pass for rides without the fastpass like access.

Step 3: They will explain the process to you while they scan your tickets so you can get more accurate and up-to-date information than I’m giving here.

Step 4: The Disney cast member who is helping you will ask which ride you want to go on first.  Tell them that and they will scan your tickets and tell you when you can go on that ride.  For example, we said, “It’s a small world”. It was 10:30am.  We were told that any time after 11am we could go to the disability line.

Step 5: Enjoy the park, other rides, shopping, music, resting, etc. until your time.  Any time after your appointed time, you can go to the disability access line for that ride.  Tickets are scanned and you are allowed in line. For It’s a Small World, there is a separate disability access line.  For other rides, say, Star Tours, one goes to the fastpass person.  That person will scan your ticket and then you are in the regular line.  The Star Tours person gave us a plastic laminated pass that we took with us to the next person in line.  I’m not sure what purpose that serves.

Step 6: Once done with a ride, you can get in another “virtual” line with your pass.  There are three kiosks in Disneyland for this.  One in the Main Street central plaza.  One is in Fantasy Land between Dumbo and the Storybook Land ride.  The third is in Tomorrow Land between Star Tours and the gift shop at the exit of Star Tours.  The person at the kiosk will scan your tickets and tell you what time you can get in the disability access line.

Alternatively, one can go to the fastpass person at the line for the ride you want to get on and ask to be put on the virtual line for that ride (and that ride only).  When I went to some rides I was asked “do you want to get in line or are you already registered”.  So, you don’t have to go to one of the three disability kiosks each time.  I got some mixed messages about that, though.  One person told me that I couldn’t be added.

Not all rides have disability access lines or fastpass.  For example, the train. At the train we asked a cast member what to do and were told to just wait at the exit.  When the train came to the station, we showed another cast member our white pass (remember those terms and conditions discussed above?) and got on the train.  Basically, this is how the old disability access pass worked.

Disney has a web page on disability access and strategies: Services for Guests with Disabilities.  There’s a pdf on the Disability Access Service (DAS) there, and I’ve copied it here: dlr-disability-access-service_2014-11-19.

I bring this up because here’s a key paragraph in that document:

DAS, with its virtual wait, will accommodate many of our Guests with disabilities. We recognize, however, that our Guests with disabilities have varying needs, and we will continue to work individually with our Guests to provide assistance.
In unique situations, our Guest Relations staff will discuss special accommodations for persons who are concerned DAS doesn’t meet their needs (e.g., those whose disability limits the duration of their visit to the park or limits their choice of attractions).

All accommodations will be made in person, on site at Guest Relations. We are unable to provide accommodations in advance of a Guest visit.

This tells me they’ve been paying attention to people like myself who have complained that it isn’t just the lines for each ride that matter.  For some of us, our time in the park is very limited.  And at $100/ticket ($90/kids under 10), it’s a big deal to go to Disneyland.  Even with accommodations, my kid was melting down in the last line and we were not at the park for very long.

Next time I’m printing out that pdf (or whatever they have at the time) and bringing it along.

By Matt Carey