Archive | Autism RSS feed for this section

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

Tom Insel to leave NIMH

4 Oct

Tom Insel has been the director of the U.S. National Institute of Mental Health for 13 years. He chaired three incarnations of the Interagency Autism Coordinating Committee (IACC), taking that chair shortly after the first IACC was seated.

He will be joining Alphabet (Google) in the Google Life Sciences team.

As chair of the IACC, Insel has shown that he kept a very close watch on autism research and an interest in the autism community. More than one could normally expect from the chair. And this isn’t just my observation. I’ve had others who watch the IACC and NIH closely tell me this.

I wish him well in his next effort.

Here is Tom Insel’s statement from the NIH website:

Dr. Tom Insel to Step Down as NIMH Director

After 13 years as NIMH Director, I have decided to move on. I will be leaving NIMH at the beginning of November. These years serving as director have been inspiring, at times challenging, and ultimately gratifying beyond anything I might have imagined when I arrived in 2002. I was fortunate to serve under two visionary NIH directors, Elias Zerhouni and Francis Collins, and to work with extraordinary Institute and Center Directors. I will be leaving a team of gifted and dedicated colleagues within NIMH. The NIMH has accomplished so much during this past decade — progress in neuroscience, progress in diagnostics and therapeutics, and, most of all, progress toward a focus on the needs of people with serious mental illness. To be able to work on such important problems with such talented people has been the high point of my professional career.

Why am I leaving? I had always planned to depart after 10 years. I stayed longer because of the fun of first launching a new Institute, the National Center for Advancing Translational Sciences (NCATS), and then the BRAIN Initiative, as well as my passion for what we have been doing at NIMH. I am not leaving because of a problem or crisis. Indeed, I chose this moment because I wanted to leave at a high point: for the first time in many years we have a complete and completely outstanding leadership team at NIMH, we have excellent engagement from the advocacy community, we have unprecedented support from Congress, and we have an inspiring strategic plan. I want to step away at the best of times with all signs pointing to a bright future.

In terms of my own future, I am certainly not planning to retire. I am currently working out the final details for a move to the life sciences team at Google (or rather, Alphabet, now!). The Google Life Sciences (GLS) team is developing new technologies to transform healthcare, such as a contact lens with an embedded glucose monitor. The GLS mission is about creating technology that can help with earlier detection, better prevention, and more effective management of serious health conditions. I am joining the team to explore how this mission can be applied to mental illness. That the life sciences team at Google would establish a major exploration into mental health is by itself a significant statement — recognizing the burden of illness from psychosis, mood disorders, and autism as well as the opportunity for technology to make a major impact to change the world for the millions affected. The Google philosophy has been to seek a 10x impact on hard problems. I am looking forward to a 10x challenge in mental health.

A national search for a new NIMH Director will be launched, but in the meanwhile Dr. Collins has issued an official statement appointing Dr. Bruce Cuthbert as Acting Director. Bruce has held a number of leadership positions at NIMH, including leading our RDoC initiative as well as the NIMH Division of Adult Translational Research. He is an internationally recognized researcher. I greatly appreciate his willingness to lead the Institute during this transition period. I know with Bruce at the helm and the leadership team in place at NIMH, I leave the Institute in strong, capable hands.

—
By Matt Carey

Newsweek: Anti-Vaxxers Accidentally Fund a Study Showing No Link Between Autism and Vaccines

3 Oct

Newsweek has an article up at Newsweek about the recent vaccine study–the one discussed in the press release here. The title of the article pulls no punches: Anti-Vaxxers Accidentally Fund a Study Showing No Link Between Autism and Vaccines

Here’s how it starts:

Most experts today agree that the belief that childhood vaccines cause autism is based on bunk science. Even still, some advocacy groups claim immunizations are responsible for raising the risk for this neurodevelopmental condition, despite a growing body of research that shows there isn’t a link. (The study that most anti-vaccination groups point to was retracted after it was found to be based on falsified data.)

If the title didn’t tip you off that there would be no false balance here, this first paragraph is very clear.

Here’s the second paragraph, where they discuss how SafeMinds, called an organization in the anti-vaccine movement:

Despite the science, organizations involved in the anti-vaccine movement still hope to find some evidence that vaccines threaten children’s health. For example, the autism advocacy organization SafeMinds recently funded research it hoped would prove vaccines cause autism in children. But this effort appears to have backfired for the organization—whose mission is to raise awareness about how certain environmental exposures may be linked to autism—since the study SafeMinds supported showed a link between autism and vaccines does not exist.

SafeMinds, even though they funded the study and were kept aware of the progress, even though they knew the methods and approved of them, wants to do their own analysis.

But Sallie Bernard, president of SafeMinds, says she would at least like to see a re-analysis of the newest data. “We feel that embedded within these data sets there are animals that have potentially an adverse reaction to this vaccine schedule that would mirror what happens in human infants,” she says. “The majority who get vaccines are fine, but we believe there is a subset that have an adverse reaction to their vaccines. By looking at the raw data, not data in aggregate, we may be able to identify the subgroup that had that reaction.”

And who at SafeMinds would be better qualified than the authors to do this analysis? (who would even be remotely qualified?)

No one.

Has SafeMinds shown excellence in research methods and integrity in the past?

No.

Does anyone doubt that SafeMinds would torture the data to the point of getting the answer they want?

Integrity would be accepting the results of the study they sponsored. SafeMinds lacks that integrity.

—
Matt Carey

Press Release: New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Behavior or Neuroanatomy in Infant Primates

30 Sep

Below is a press release from the Johnson Center for Child Health and Development (formerly Thoughtful House). The press release discusses a recent study which investigated the safety of vaccine schedules (present and past) using monkeys as test subjects.

The study is a follow on study to a previous series of pilot studies involving some of the same authors. The pilot studies were considered by many to be an indication of evidence that vaccines cause autism and other neurological conditions. This larger study shows no evidence of adverse effects from vaccines.

Here is the press release:

New Research Finds No Evidence That Thimerosal-Containing Vaccines Affect Behavior or Neuroanatomy in Infant Primates

(Austin, Texas) – September 28, 2015 – New research finds no evidence that thimerosal- containing vaccines cause negative behaviors or result in neuropathology in infant primates, according to a study that will be published today in the Proceedings of the National Academy of Sciences. In this study, conducted by Dr. Dwight German of the University of Texas Southwestern School of Medicine, and colleagues, infant rhesus macaques received several pediatric vaccines containing thimerosal (a mercury-based preservative) in a schedule similar to that given to infants in the 1990s. Other animals received just the measles-mumps- rubella (MMR) vaccine, which does not contain thimerosal, or an expanded vaccine schedule similar to that recommended for US infants today. Control animals received a saline injection.

Regardless of vaccination status, all animals developed normal social behaviors. Cellular analysis of three brain regions, the cerebellum, amygdala and hippocampus (all known to be altered in autism), was similar in vaccinated and unvaccinated animals.

“This comprehensive analysis of social behavior and neuropathology in 12-18 month old rhesus macaques indicated that vaccinated primates were not negatively affected by thimerosal; the same was true for animals receiving an expanded 2008 vaccine schedule, which is similar to that recommended for US infants today” explained Dr. Laura Hewitson of The Johnson Center for Child Health and Development, one of the principle investigators working on the study. Hewitson was part of a team of researchers from The Johnson Center; the University of Texas Southwestern; the Center on Human Development and Disability Infant Primate Research Laboratory; the Washington National Primate Research Center (WaNPRC) at the University of Washington, Seattle WA; and Texas A&M Health Science Center & Central Texas Veterans Health Care System.

According to Hewitson, the study was designed to compare the safety of different vaccination schedules, including the schedule from the 1990s, when thimerosal was used as a preservative in multi-dose vaccine preparations. The data from this study indicate that administration of TCVs and/or the MMR vaccine to rhesus macaques did not result in neuropathological abnormalities,or aberrant behaviors, like those often observed in autism.


Citation
Administration of thimerosal-containing vaccines to infant rhesus macaques does not result in autism-like behavior or neuropathology. Bharathi S. Gadad, Wenhao Li, Umar Yazdani, Stephen Grady, Trevor Johnson, Jacob Hammond, Howard Gunn, Britni Curtis, Chris English, Vernon Yutuc, Clayton Ferrier, Gene P. Sackett, C. Nathan Marti, Keith Young, Laura Hewitson and Dwight C. German. PNAS

This article can be downloaded for free here.

This study was supported by The Ted Lindsay Foundation, SafeMinds, National Autism Association, and the Johnson and Vernick families. This work was also supported by WaNPRC Core Grant RR00166 and CHDD Core Grant HD02274.

About The Johnson Center
The mission of The Johnson Center for Child Health and Development is to advance the understanding of childhood development through clinical care, research, and education.

Previous Press Releases
For Immediate Release
Contact: media@johnson-center.org
512-732-8400

—
By Matt Carey

Literature review: HBOT is not recommended for ASD treatement

28 Sep

Hyperbaric Oxygen Treatment (HBOT) is one of the many “treatments” that are promoted for autism.   This recent literature review shows that there is no good basis for HBOT and autism.

Or, as the abstract concludes “HBO2 should not be recommended for ASD treatment until more conclusive favorable results and long-term outcomes are demonstrated from well-designed controlled trials.”

Using hyperbaric oxygen for autism treatment: A review and discussion of literature.

PURPOSE:

To determine whether hyperbaric oxygen (HBO2) therapy should be used for the treatment of autism spectrum disorders (ASD).

METHODS:

A literature search was performed on PubMed, Cochrane Library and DynaMed for studies evaluating the use of HBO2 for ASD treatment. The studies were then reviewed for the highest quality evidence.

RESULTS:

The evidence is weak for the use of HBO2 in ASD, with only one, likely flawed, randomized control study showing treatment benefit.

CONCLUSIONS:

HBO2 should not be recommended for ASD treatment until more conclusive favorable results and long-term outcomes are demonstrated from well-designed controlled trials.

—

By Matt Carey

Study shows societal inclusion improves life satisfaction

27 Sep

I know a lot of people will read the title of this post and say, “that’s obvious”. But keep in mind–studies give people a chance to advocate better. Now for the limitations–the study was only on individuals who did not have difficulties in areas of daily living skills. And, yes, the study population did not have intellectual disability.

But with all that, here’s the sentence I’ll highlight from the abstract: “Participating in society was identified as the only factor predicting life satisfaction in individuals with ASD.”

Here is the pubmed link
Psychosocial Functioning and Life Satisfaction in Adults With Autism Spectrum Disorder Without Intellectual Impairment.

and here is the abstract:

OBJECTIVES:
This study aimed at (a) comparing psychosocial functioning and life satisfaction in adults with autism spectrum disorder (ASD) and nonclinical participants and (b) identifying areas of functioning that are most predictive for life satisfaction in individuals with ASD.
METHOD:
A total of 43 adults with ASD without intellectual impairment (age: mean = 31, standard deviation = 10 years; 63% females) and healthy nonclinical individuals (N = 44) were surveyed.
RESULTS:
Individuals with ASD reported significant functional impairments and less life satisfaction compared with nonclinical individuals in many areas of life. Although impairments were prominent in domains involving interaction with other people such as understanding and communication, getting along with others, and participation in society, daily living skills (e.g., getting around, self-care, and household) were not different from nonclinical participants. Participating in society was identified as the only factor predicting life satisfaction in individuals with ASD.
CONCLUSION:
There is a need for interventions facilitating functioning on a broad level and support toward societal inclusion for individuals with ASD.

—
By Matt Carey

Thank you Kevin Moon Loh

25 Sep

An actor in a major musical production has a facebook post about a recent performance. In this performance, an autistic child made noise during a quiet part of the show. And Mr. Loh comes to the defense of the child.

The post begins:

I am angry and sad.
Just got off stage from today’s matinee and yes, something happened. Someone brought their autistic child to the theater.
That being said- this post won’t go the way you think it will.
You think I will admonish that mother for bringing a child who yelped during a quiet moment in the show. You think I will herald an audience that yelled at this mother for bringing their child to the theater. You think that I will have sympathy for my own company whose performances were disturbed from a foreign sound coming from in front of them.
No.
Instead, I ask you- when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?

Mr. Loh quotes Joseph Papp that theater is created for all people. It’s a message that resonates with my family. We have worked to make the theater experience accessible to our own child and also to other disabled people in our community. I am proud to say that my wife started on this effort even before the idea of a “sensory friendly” performance became big news. Proud not because she was ahead of the curve, but because this shows that this is an effort of passion on her part.

Mr. Loh, I thank you. Theater is for everyone.

—
By Matt Carey

Autism Speaks founder Bob Wright’s opinion is more important than science

24 Sep

Last year the Chief Science Officer of Autism Speaks made a simple and clear statement

“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.”

It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.

But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things.  The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.)  So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.
Rob Ring
Chief Science Officer, Autism Speaks
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
Bob Wright
Co-founder, Autism Speaks
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science?  Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad.  A sad move by Autism Speaks.  A sad move by Bob Wright.
But I’ve already written about that.  Why bring it up again now?  Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
AS backpedals on vaccines
I so want Autism Speaks to be an organization I could support.  And sometimes they seem to be moving in that direction.  But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities.  And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.

Autism Speaks pretends to be a science driven organization, but they just aren’t.  The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.

—
By Matt Carey

Tags: , ,

Steve Silberman discusses Neurotribes in a New York Magazine interview, dispels common myth about Neurodiversity

24 Sep

Author Steve Silberman (author of Neurotribes) was interviewed in New York Magazine recently: The Problematic Obsession With ‘Curing’ Autism. Mr. Silberman has been interviewed a lot recently as his best selling book (Neurotribes) has rolled out, so one might wonder why I’m focused on this particular interview. Well, as it turns out, one statement clearly and concisely addresses many of the misconceptions (read straw man arguments) that people make about the neurodiversity movement.

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

If you are unfamiliar with the discussion, let me explain. Many of those who criticize the neurodiversity movement claim that the neurodiversity movement denies that autism is a disability.

If one wants to hunt down autism misinformation, a good first place to look is the blog “The Age of Autism”. So, I went to google, search silberman site:ageofautism.com, and read. Top of the list, an article titled “Autism Speaks vs. Steve Silberman”. Search the page for “disability” and get–

NO ONE CAN TELL US. We’re absolutely paralyzed by autism. We have the view of neurodiversity people who look at autism not as a disability, but as just another way of seeing the world.

See the difference? According to the Age of Autism writer, “neurodiversity people who look at autism not as a disability”. But, as Mr. Silberman tells us, it is precisely because we need to see autism as a disability in order to move forward on the making achievable improvements in the lives of autistic. (And not view autism some passing phase for a child, should we just find the correct industrial chemical to sprinkle on their gluten free waffles, as the Age of Autism would have it).

Go to the next article in the google search and one finds

The coverage below is very convincing. People who haven’t looked into the issues involved here might think Steve Silberman makes sense. So, if all the autism is really due to a broader definition and better diagnosing, shouldn’t we just recognize and provide for this minority of unique people among us? Calling autism a disability is really an insult.

In another article, the Age of Autism writes “Unless and until people like Steve Silberman can show us the one in 68 autistic adults out there, his book is fantasy fiction.”

And there you see the reason why AoA doesn’t like Mr. Silberman or his views. Because Mr. Silberman lays out in detail why we should listen to the man who discovered autism (Hans Asperger) and accept that autism is not new. If autism is not new, then the Age of Autism “The Daily Web Newspaper of the Autism Epidemic” (read, we exist to promote the idea that vaccines-cause autism) would be built on a false premise.

Which it is.

By the way, those details that Mr. Silberman lays out are ones which apparently the writers at the Age of Autism don’t have the time to read, as there’s no evidence anyone there critiquing his book has actually read it. Seriously, the articles are all based on interviews and reviews of the book rather than the book itself.

And we are left with the irony of the Age of Autism (a strong proponent of the failed idea that vaccines cause autism and that pretty much anything touted as a “cure” for autism should be purchased by parents and subjected to disabled children) calling something “fantasy fiction”.

Pointing out that the Age of Autism is wrong can be a full time job. Or at least a daily exercise in that the are pretty much always wrong. So, why bother now? Because, once again, I felt that Mr. Silberman spelled out one aspect of the neurodiversity movement so well. So well, in fact, that I will copy that paragraph here:

Silberman believes that our conversation about autism could be made a great deal clearer and more humane if we viewed the condition as a disability. “For various reasons that I talk about in the book, we haven’t thought about it as a disability in the same way that we talk about blindness and deafness as disabilities.” That is, while everyone agrees that printing Braille books and offering closed-captioning services are worthwhile things to spend money on, autism is different — as Silberman put it, imagine if our attitude was “Forget the wheelchair access! Someday, everyone will walk.”

—
By Matt Carey

← Older Entries
Newer Entries →