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Release of the IACC Summary of Advances in ASD Research and Updates on Autism Awareness Month Activities

1 Apr

Below is a copy of the email the IACC sent out today with research advances and updates on Autism Awareness Month activities.

The Interagency Autism Coordinating Committee and Office of Autism Research Coordination are pleased to announce that the 2010 IACC Summary of Advances in Autism Spectrum Disorder Research was released and posted to the IACC website today in conjunction with Department of Health and Human Services celebration of “National Autism Awareness Month” and the United Nations designated “World Autism Awareness Day” on April 2, 2011. The 2010 IACC Summary of Advances is a collection of brief summaries covering the twenty research findings and associated publications that the IACC felt made the most significant contributions to autism biomedical and services research in 2010.

Please feel free to visit the pages below for more information on the IACC Summary of Advances and National Autism Awareness Month activities.

IACC and Department of Health and Human Services information:

-IACC Home Page: http://iacc.hhs.gov/

-IACC News Update on Release of the 2010 Summary of Advances

The 2010 IACC Summary of Advances in ASD Research

-Blog: IACC Chairman, Dr. Thomas Insel, highlights recent progress in honor of National Autism Awareness Month

-Department of Health and Human Services Secretary Kathleen Sebelius’ Statement on National Autism Awareness Month

-Department of Health and Services homepage spotlights Autism Awareness Month: http://www.hhs.gov/

Release of the Department of Health and Human Services’ Report to Congress on Activities Related to Autism Spectrum Disorder and Other Developmental Disabilities Under the Combating Autism Act of 2006 (FY 2006-FY 2009)

-Centers for Disease Control and Prevention (CDC) Announcement for Autism Awareness Month

Upcoming IACC Full Committee Meeting April 11, 2011, featuring special presentations in recognition of National Autism Awareness Month

Additional Autism Awareness information:

United Nations’ Secretary-General Ban Ki-moon’s Statement Regarding World Autism Awareness Day

We wish everyone the best as we reflect this month on the significance of our work together to improve the lives of people with autism and their families.

Sincerely,

The Office of Autism Research Coordination

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

Loving lampposts

30 Mar

Loving Lampposts is a film by an autism parent. I’m waiting for my copy (disclosure: I have asked for a review copy from the producer). In the meantime, reviews have come out by better prepared writers than I. Steve Silberman at Neurotribes has an interview with the filmaker: “Loving Lampposts,” A Groundbreaking Documentary About Autism, Love, and Acceptance. Shannon Des Roches Rosa at The Thinking Person’s Guide to Autism has Loving Lampposts: Accepting and Understanding Neurodiversity. Liz Ditz at I speak of Dreams has A Must-See Movie: Loving Lampposts.

I remember first hearing about this project some time ago when there was just a very sparse website. I had no concept of where the project was going. I was left with a couple of questions then, including: is this going to be a fairly shallow movie about a single quirk in a single autistic? (The idea for the title comes from the fact that the filmaker’s son, well, had a love of lampposts. )

From the reviews (above) and from the materials already available, this looks to be a good movie. A movie which presents some very important questions and gives thoughtful discussion to them. From the Loving Lampposts website:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

Here is a video clip made available:

Loving Lampposts Trailer from Loving Lampposts on Vimeo.

In this short clip we see the wonderful boy, Sam, Prof. Richard Grinker (anthropologist, author of the book Unstrange Minds, and autism researcher), I believe that’s Kristina Chew’s voiceover in a clip of her son Charlie riding his bike, Jenny McCarthy, and parents at a National Autism Association meeting.

Press materials for the book do what they should: they make me want to see the movie. Yes there are the excellent photos of Sam and Lampposts:

But there are also photos of Stephen Shore working with a student:

And a photo of Dora Raymaker:

To point out only a few of the photos.

From the Press Kit, here is the list of participants in the film. It’s a very big and rather diverse group of people.

Featured

Nadine Antonelli and Noah: A resident of Wilmington, N.C. and a medical doctor, Nadine initially believed that she should try to cure her son Noah’s autism. Over time, though, she came to accept his diagnosis and she now works to provide support to other families with autistic children in Wilmington.

Simon Baron-Cohen: The Director of the Autism Research Centre at Cambridge University and a world-renowned expert on autism.

Kristina Chew, Jim and Charlie Fisher: Professors at St. Peter’s College and Fordham University respectively, Kristina and Jim are raising their autistic son Charlie in Cranford, NJ. Kristina is a popular blogger writing about her experiences with Charlie and advocating for neurodiversity.

Paul and Jackie Colliton and Billy: Residents of New York City, Paul and Jackie adopted their autistic son Billy when he was ten days old. He did not begin to speak until age seven.

Todd and Erika Drezner and Sam: The filmmaker, his wife, and their autistic son.

Roy Richard Grinker: A Professor of Anthropology at George Washington University, Richard is the father of an autistic daughter and the author of Unstrange Minds, a history of autism and an examination of how it is treated around the world.

Lila Howard and Lyndon: The 87 year-old mother of a 60 year-old autistic son, Lila raised Lyndon as a single mother at a time when there was no support for parents of autistic children. Ignoring experts who blamed her son’s condition on her and suggested he be institutionalized, Lila helped Lyndon learn to live independently. Today, he lives in his own apartment in New York City, where he has lived for 13 years. Lila remains his primary caretaker.

Jay Kochmeister: The father of Sharisa (see below).

Sharisa Kochmeister: An autistic adult who does not speak, Sharisa was believed to have an IQ of 30 from the time she was two until she turned 13. Almost by accident, her family discovered she could read, and she now communicates with a computer with text to speech capability. Her IQ is at a genius level, and she is a graduate of Denver University who advocates for autistic people.

Eileen Muniz, Gianna, Marz, and Vincent: The mother of three autistic children in Mohegan Lake, NY, Eileen and her husband recently separated.

Paul Offit: A doctor who is the Chief of Infectious Diseases at Children’s Hospital of Philadelphia. He argues strongly against the idea that vaccines cause autism, and is the author of Autism’s False Prophets, which exposes scientifically unsupported treatments for autism.

Dora Raymaker: An autistic adult who communicates using a computer with text to speech capability, Dora is working on her graduate degree in Portland, Oregon. She is the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Johnny and Chris Seitz: An autistic adult and performance artist, Johnny worked with his wife Chris to develop “God Does Not Make Garbage,” a 30 minute show that goes inside the world of autism.

Stephen Shore: Diagnosed with autism in 1964, Stephen was said to be profoundly ill and was recommended for institutionalization. Today, he is a Professor at Adelphi University. He also teaches music to autistic children and lectures about autism all over the world.

Cindy Walsh, Eric, and Robbie: The mother of twin boys with autism in Chantilly, CA, Cindy believes she has “recovered” her children with alternative treatments.

ALSO APPEARING

Elizabeth Avery: An autistic adult living in the Boston area.

Kenneth Bock: A doctor who treats patients with autism using alternative therapies.

Nancy Cale: The co-founder of the organization Unlocking Autism.

Paul Collins: The father of an autistic son and the author of Not Even Wrong, a history of autism.

Doreen Granpeesheh: The Executive Director of the Center for Autism and Related Disorders.

Kristin Holsworth: The mother of an autistic son, Troy.

Peter Hotez: A doctor who is President of the Sabin Vaccine Institute, Peter is the father of an autistic doctor. He says that there is no scientific evidence that vaccines cause autism.

Karen Hubert: A sales representative for New Beginnings Nutritionals, Karen markets vitamins and supplements to parents of autistic children.Dan Joyce: A representative of the organization Autism Speaks.

David Kirby: The author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic.

Estée Klar: The mother of autistic son Adam, founder of the Autism Acceptance Project, and writer of a blog called “The Joy of Autism.”

Robert Krakow: The father of an autistic son a plaintiffs lawyer in vaccine injury cases.

Jenny McCarthy: The celebrity actress is the mother of an autistic son and a leading proponent of the idea that vaccines cause autism.

Arnold Miller: The Director of the Language and Cognitive Development Center of Boston.

Barbara Moran: An autistic adult with a special interest in steam locomotives and old GE refrigerators.

Bob Morgan: The owner of Heavenly Heat Saunas, Bob believes that saunas can “detoxify” autistic children.

James Neubrander: A doctor who treats patients with autism using alternative therapies.

Christina Nicolaidis: The mother of an autistic son and the co-director of the Academic Autistic Spectrum Partnership in Research and Education.

Laura Rose: The mother of a “recovered” autistic son, Jason.

Ralph James Savarese: Ralph and his wife adopted a six year-old profoundly autistic boy who had been severely abused. Today, although Ralph’s son cannot speak, he is a straight A student in an Iowa high school.

Bill Schindler: The director of the Mild Hyperbaric Therapy Center, Bill works with parents who treat their children’s autism by giving them treatments in hyperbaric chambers.

Phil Schwarz: The father of an autistic son and an advocate of neurodiversity.

Kassiane Sibley: An autistic adult and advocate for neurodiversity.

Autumn Terrill: An expert in special education who works with Billy Colliton.

Anju Usman: A doctor who treats patients with autism using alternative therapies.

Social-sexual education in adolescents with behavioral neurogenetic syndromes

30 Mar

A recent paper abstract I read brought up a very important topic which I don’t see discussed much: sex education for adolescents with developmental disabilities. I don’t know how good the paper itself is, but I agree with the conclusion: “Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. ” On one level I don’t want to think about sex and my kid. But I also have run into a belief that sex isn’t a topic to consider for people with developmental disability and autistics in particular. Perhaps I am naive, but I don’t see this as a good approach. I think sexuality is too important a topic to leave unaddressed. The discussion is going on. Just rarely in the parent-oriented online world.

Isr J Psychiatry Relat Sci. 2010;47(2):118-24.
Social-sexual education in adolescents with behavioral neurogenetic syndromes.

Plaks M, Argaman R, Stawski M, Qwiat T, Polak D, Gothelf D.
The Behavioral Neurogenetics Center, Feinberg Department of Child Psychiatry, Schneider Children’s Medical Center of Israel, Petah Tikwa, Israel.

Abstract
BACKGROUND: Adolescents with developmental disabilities have unmet needs in their sexual and social knowledge and skills. We conducted a sexual social group intervention in adolescents with neurogenetic syndromes, mainly with Williams and velocardiofacial syndromes and their parents.
METHOD: Ten adolescents with neurogenetic syndromes and 14 parents participated in a Social Sexual Group Education Program. The program was delivered in 10 biweekly sessions to the adolescents and their parents separately.
RESULTS: The focus of psychoeducation in both groups was the adolescents’ self-identification, acceptance of the developmental disability, independence, establishment of friendship and intimate relationship, sexual knowledge and sexual development, and safety skills. Change in independent activities of adolescents and in their concept of “Friend” was measured.
CONCLUSIONS: Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. These programs should start already before adolescence and follow the children into young adulthood.

Interagency Autism Coordinating Committee (IACC) Services Subcommittee: meeting about to start

29 Mar

The Interagency Autism Coordinating Committee (IACC) Services Subcommittee is about to hold a meeting. You can listen in via phone or by webcast. Instructions are below.

Interagency Autism Coordinating Committee (IACC) Services Subcommittee

Please join us for an in-person meeting of the IACC Services Subcommittee that will take place on Tuesday, March 29, 2011 from 2:00 p.m. to 4:30 p.m. ET.

Agenda: The subcommittee plans to discuss issues related to services and supports for individuals with autism spectrum disorder (ASD) and their families.

Meeting location:
The Neuroscience Center (NSC)
6001 Executive Boulevard, Room 8120
Rockville, MD 20852

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

The meeting will also be accessible by conference call and webinar. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-456-0356
Access code: 1427016

If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Webinar Access: https://www2.gotomeeting.com/register/169578426

If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

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

Contact Person for this meeting is:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
IACCpublicinquiries@mail.nih.gov

Reauthorizing the Combating Autism Act?

12 Mar

The Combating Autism Act (CAA) committed the US government to fund autism research. As part of this effort, the Interagency Autism Coordinating Committee (IACC) was re-authorized (it actually predated the CAA, having been established under the Children’s Health Act of 2000)

At the end of the last congress, a Combating Autism Reauthorization Act (CARA) was presented. It was a nice move by Sentator Dodd as he was retiring, but as you will read if you follow the link, that bill is dead:

This bill never became law. This bill was proposed in a previous session of Congress. Sessions of Congress last two years, and at the end of each session all proposed bills and resolutions that haven’t passed are cleared from the books. Members often reintroduce bills that did not come up for debate under a new number in the next session.

If you go to the Senate’s webpage and enter “autism” as a search term for current bills, you will get two. Neither is the re-authorization of the CAA. Similar results come from searching Thomas for autism.

Sometimes I think, I just can’t find it. But it really isn’t there. In their piece Urge Congress to Reintroduce the Combating Autism Reauthorization Act!, “The Child Health Site” is asking people to sign a petition to reintroduce CARA.

The text of the original CAA you will find the following (or similar) a number of times: Sunset.–This section shall not apply after September 30, 2011.

Authorization for funding will sunset this year. The IACC will sunset this year. That is, of course, unless a re-authorization occurs. I haven’t seen much from the national autism organizations calling for action on this. There is undoubtedly much going on behind the scenes, but it strikes this observer that perhaps something should have happened by now.

Bullying Revisited: Retarded?

4 Mar

There’s a good article on the Huffington Post that I want to draw some attention to. Tim Shriver Jr. and Soeren Palumbo wrote a piece, Bullying Revisited: Retarded?. They discuss the
Spread the Word to End the Word campaign by Special Olympics (and supported by about 200 more organizations).

I know it is pretty much preaching to the choir here talking about the harmful message in words like “retarded” as it is commonly used today. But, perhaps the choir could go over there and show some support. I’d like to see the Huffington Post host more pieces like this than, well, some of the material they host.

March Is Developmental Disabilities Awareness Month

3 Mar

For the past few years, each April gets a lot of attention for Autism Awareness Month. All well and good but are you aware that Developmental Disabilities Awareness Month has already started?

A message from The Arc:

March Is Our Month

Thanks to the advocacy efforts of The Arc in the 1980s, President Ronald Reagan officially declared March to be Developmental Disabilities Awareness Month in 1987. For nearly a quarter of a century, The Arc and its network of 700+ chapters across the country have fostered respect and access for individuals with intellectual and developmental disabilities (i/DD). We have made tremendous progress in promoting and protecting the rights of people with I/DD and creating opportunities for them to live, learn and work as valued members of their communities.

However, it’s time more people became aware of the challenges faced by more than 7 million Americans and their families as they strive to be fully included in society. Join us during March to help raise awareness. Volunteer at a local chapter of The Arc. Donate. Or simply speak up and help enlighten those around you. Find out more about I/DD and what you can do at www.thearc.org today. Watch our blog, Facebook page and Twitter profile for messages all month about things you can do as an individual to help raise awareness then spread the word…share and retweet and let’s get everyone talking about I/DD during March.

David Cameron intends to cripple those with disabilities

3 Mar

Today I received an email from NAS stating:

The Government has announced a one billion pound cut to Disability Living Allowance (DLA). Next week in parliament, MPs will debate plans for a new system which could make it much harder for adults with autism to claim DLA…

For those not in the know DLA is a state benefit given to children (or their parents depending on age) and adults who have an established need based on circumstances arising from their disability. For example, my child receives DLA because xe cannot care for xyrself and needs extra help that must be accounted for. It is not a huge amount of money but for people with a disability, every single penny counts.

NAS’ email continued:

We need you to ask your MP to help protect this crucial benefit for people with autism.

Please also visit the NAS Who Benefits page to actively support the initiative and make David Cameron’s coalition led gvmt wake up to the reality that for autistic adults, DLA is a lifeline to not just personal independence but also simple everyday living.

2011 IACC Strategic Plan Includes New Focus on Interventions for Nonverbal People with ASD, Health Promotion Efforts, and Safety

1 Mar

IACC news alerts come out periodically. You can check the archive and/or sign up for the emails. The 2011 Strategic Plan came out yesterday. Coincident with that was a news announcement:

2011 IACC Strategic Plan Includes New Focus on Interventions for Nonverbal People with ASD, Health Promotion Efforts, and Safety

The Interagency Autism Coordinating Committee (IACC) has released its 2011 Strategic Plan for Autism Spectrum Disorder (ASD) Research, which is intended to provide a blueprint for future ASD research efforts. The Plan provides a set of research recommendations to guide federal autism research efforts and serves as a basis for partnerships with other agencies and private organizations involved in ASD research and services.

“Federal and private investment in autism research has increased markedly in the past two years,” said IACC Chairman and NIMH Director Dr. Thomas Insel. “At the same time, the IACC has heard from the community about the growing need for research and the importance of new areas for rigorous scientific study. This updated research Strategic Plan builds on recent discoveries and emerging opportunities to identify new areas where science can make a difference for individuals and families with ASD.”

Several new areas of focus have been identified in the 2011 Plan, including studies on the use and accessibility of Alternative and Augmentative Communication (AAC) tools for nonverbal individuals on the spectrum and studies of health promotion and the prevention of related health concerns such as obesity and mental health issues. In addition, in response to public concerns about the health and safety of children and adults with autism, the committee added new objectives related to understanding safety issues that may contribute to the increased risk of injury and premature death that has been reported in the literature.

In total, the IACC added 16 new objectives to the Plan during the update and added an addendum section to each chapter describing what has been learned over the past year, what gap areas have emerged, and what progress has been made in fulfilling the existing objectives. During the annual update of the Plan, which is required under the Combating Autism Act of 2006, the IACC considered input from ASD community, advocacy groups, research funding organizations, and the scientific community. Also incorporated was information from the IACC Portfolio Analysis of ASD Research Funding in 2009 (the most recent year for which there was complete funding data), the 2010 IACC Summary of Advances in ASD Research, the Request for Information (RFI) on the 2010 Plan, and the proceedings of the IACC Services Workshop held in November 2010.

In developing the 2011 Plan, the committee highlighted many successful collaborations that have been recently formed among member agencies and organizations. These collaborations included a joint conference held by the National Institute of Environmental Health Sciences (NIEHS) and Autism Speaks on autism and the environment; an information portal called AutismNOW supported by the Administration for Children and Families (ACF), in partnership with the Autistic Self-Advocacy Network (ASAN) and the Autism Society; and the Autism Informatics Consortium, which is designed to improve the utility and usability of informatics tools for ASD researchers and represents a collaboration between NIH, Autism Speaks, and the Simons Foundation. These public-private partnerships embody the spirit of collaboration described in the Plan’s Mission Statement and are critical to making progress toward understanding ASD and improving the lives of people on the spectrum, as well as those of their families.

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