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Archive for December, 2010

Autism in the News – 12.23.10

December 23, 2010 Leave a comment

Autism parents battle on: backers aim to reintroduce bill to require insurance coverage (Genesee County, Mich.)
Nine-year-old Remi Bossardet wants to be a mayor when he grows up, or maybe an actor, or possibly a football player. Read more.

PS 205 breaks barriers with program (Oakland Gardens, N.Y.)
The special education students in the PS 205 building in Oakland Gardens used to be known as “those kids upstairs.” Read more.

Retiring deputy head is ‘part of school’s fabric’ (UK)
A deputy headteacher who has worked at a school for children with learning difficulties since it was founded is retiring to the seaside. Read more.

Company redesigns bedroom for autistic boy (Nashua, N.H.)
P.J. Davey is changing lives and paying it forward – one brush stroke at a time. In June 2009, Davey, of Nashua, launched Paint It Forward, a company dedicated to helping people who have served overseas, have suffered immense loss or have survived a devastating illness. Read more.

New Organisations Authorised To Certify Disability Assist Dogs (New Zealand)
Local Government Minister Rodney Hide today announced the addition of Perfect Partners Dogs Trust and Assistance Dogs New Zealand Trust to the list of organisations authorised to certify disability assist dogs. Read more.

Autism in the News – 12.22.10

December 22, 2010 2 comments

Triplett Makes History (SCT Online)
Forest legend Donald “Don” Triplett said he grew up always knowing he was “different.” But what he might not have realized was that his being “different” would be recorded as a timestamp in medical history as the first child of autism. Read more.

Inspiration hope of singer Matt (UK)
A Castle Bromwich singer hopes that his success in a national singing competition will inspire other people with autism. Read more.

Music therapist helps improve patients’ lives (Des Moines, Iowa)
Shelly Peterson uses music to improve the lives of young children as well as help clients with brain injuries, autism, dementia and cerebral palsy. Read more.

Battle Monument Grad Honored for Helping Special-Needs Students (Dundalk Patch)
When Stacey Smallwood, a personal assistant at Battle Monument School, recently won the employee award given by the Baltimore County Commission on Disabilities, she joined a small circle of award recipients that included Dundalk Councilman John Olszewski, Sr. Read more.

Hadi Temple provides rides to Shriners Hospitals, make kids smile (Evansville, Ind.)
A trip to the hospital actually makes some Tri-State children smile because their drivers wear funny hats. Read more.

December 14, 2010 IACC Meeting Summary

December 21, 2010 4 comments

The Interagency Autism Coordinating Committee (IACC) met on Tuesday, December 14, at the Bethesda Marriott in Bethesda, Md. This is the fifth time the Full Committee has met in 2010. The IACC has made significant progress in the past year in the following areas:  1) releasing the 2010 Strategic Plan for Autism Research (February 3); 2) publishing the 2008 Portfolio Analysis Report (January 19); 3) releasing the 2009 Summary of Advances in ASD Research; 4) hosting first annual IACC Services WorkshopBuilding a Seamless System of Quality Services & Supports Across the Lifespan (November 8); and 5) updating the 2011 Strategic Plan for Autism Research.

IACC Chair and NIMH Director Thomas Insel, M.D. opened the meeting with a presentation on research developments since the last IACC meeting. Dr. Insel reported that autism was a “hot topic” at the recent Society for Neuroscience meeting with a 30 percent increase in abstracts focused on autism. The meeting also included a Public Symposium, Autism: Progress and Prospects, chaired by Gerald Fischbach, M.D., Scientific Director, Simons Foundation Autism Research Initiative.

The IACC meeting agenda was devoted primarily to consideration of updates to the Strategic Plan for Autism Research. Members of the Strategic Planning Subcommittee presented the IACC with modifications to the existing plan with appendices of new research advances, funding gaps and new research opportunities for each section of the plan. The Committee approved most of the recommendations made by the Subcommittee.

The Subcommittee’s recommendations included objectives to better understand wandering and fever in persons with ASD to Question 2 of the plan.

The Committee voted to retain the title of Question 3, “What caused this to happen and how can it be prevented?” Updates to Question 3 include reference to a Workshop “Autism and the Environment: New Ideas for Advancing the Science,” held September 8, 2010, which was co-sponsored by Autism Speaks and NIEHS. The meeting involved environmental scientists who have successfully identified environmental risk factors for other conditions, such as Parkinson’s Disease, in an effort to develop better strategies for discovering environmental risk factors contributing to the etiology of ASD. The committee voted to accept new research objectives, including in the following areas: epidemiological studies that take advantage of special populations or expanded existing databases to inform our understanding of environmental risk factors for ASD, to include  adverse events following immunization (such as fever and seizures), mitochondrial impairment, and siblings of children with regressive ASD; and the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes.

Recommendations for Question 4 were also accepted. These included research objectives to assess the effectiveness of interventions and services in broader community settings by 2015; to study interventions for nonverbal individuals with ASD; and to focus on research on health promotion and prevention of secondary conditions in people with ASD. Secondary conditions of interest include overweight and obesity, injury, and co-occurring psychiatric and medical conditions.

The IACC’s review of the Subcommittee’s recommendations for Question 5 included extensive discussion about how the IACC should address issues related to mortality, safety, and health within the IACC. New research objectives were approved to support research on health and safety issues leading to mortality.

The Question 6 recommendations on future needs of adults highlighted the urgent need for additional scientific research specific to this group. In 2010, several national advocacy groups devoted private resources to initiatives on adult services that have been brought to the IACC’s attention.

Finally, Question 7 is focused on the infrastructure and surveillance needs. The committee noted concern in funding availability for these needs. New research objectives were added. These included objectives to establish a robust network of clinical research sites that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g. DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments; and to create an information resource for ASD service providers, researchers, families, and people with an ASD which serves as a portal to obtain the most recent evidence-based reviews and plans for intervention, services, and support.

“Public input has been critically important to the Strategic Planning process,” says Geraldine Dawson, Autism Speaks’ chief science officer and IACC member. “Based on feedback received from both consumer and professional stakeholders during the Request for Information phase, the recommended Strategic Plan will include new objectives that enhance the focus on environmental factors and lifespan issues affecting adolescents and adults living with autism.”

The afternoon session began with the Public Comments portion of the meeting. Ms. Idil Abdull, parent advocate and co-founder of the Somali American Autism Foundation, thanked the IACC for its decisive action on exploring the Somali autism issue and urged it to sustain this effort. Also presenting during Public Comments was Mrs. JaLynn Prince, President and Founder of the Madison House Foundation, based in Montgomery County, Md. The mission of the Madison House Foundation is to identify the lifelong needs of adults with autism and fill those needs through education, awareness, and advocacy. Mrs. Prince encouraged the IACC to explore the expertise of organizations like the Madison House which have been dealing with adult service issues in local communities throughout the country.

The agenda also included several updates on issues raised during recent meetings. At the October meeting, the IACC asked Autism Speaks, NIEHS and CDC to investigate issues raised concerning the Somali population in Minnesota. Coleen Boyle, Ph.D., Acting Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member, Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences, and Autism Speaks’ chief science officer and IACC member Geraldine Dawson, Ph.D. provided an update on their efforts with respect to this issue. It was reported that collectively $350,000 has been committed to begin to study this issue, with Autism Speaks contributing $100,000 to this effort.

In response to a presentation on Wandering and Autism at the October meeting, the IACC created a subcommittee on safety issues the first task of which is to write the secretary of HHS on the recommendations that were made during the meeting. Lyn Redwood, R.N., M.S.N. Co-Founder and Vice President, Coalition for Safe Minds and Co-chair, Safety Subcommittee, and Alison Singer, President, Autism Science Foundation and Co-chair, Safety Subcommittee, reported on the Subcommittee’s recent meeting. The IACC authorized the Subcommittee to proceed with its information gathering in order to finalize the letter to the secretary. To inform this letter, the Subcommittee’s representatives will meet with the Departments of Education and Justice and will develop a Request for Information (RFI) on wandering. It was also announced that Autism Speaks and the Autism Science Foundation will fund a study utilizing the Interactive Autism Network (IAN) on this issue.

Services Subcommittee Co-chairs Ellen W. Blackwell, M.S.W., Centers for Medicare and Medicaid Services and Lee Grossman, President and CEO, Autism Society, reported on their Services Workshop on November 8 and subsequent subcommittee meeting. The goal of the workshop was to determine a set of recommendations to make for the Secretary of HHS. The Subcommittee is using slides from the workshop to inform the recommendations to be sent to the Secretary. The Subcommittee believes another workshop on services will be necessary next year.

Finally, the IACC solicited the input of IACC member Alan E. Guttmacher, M.D., Director Eunice Kennedy Shriver National Institute of Child Health and Human Development, on the implications of the proposed addition to Question 1 of the Strategic Plan to conduct five studies on the ethical, legal and social implications of autism screening research, including at least one study on the implications of potential future genetic testing. The committee agreed to look at what other diseases have done in this area and will convene a workshop next year.

The IACC is scheduled to meet again on January 18 and will finish its update of the Strategic Plan’s Introduction section at that meeting before approving the plan.

A Mother’s Thank You to Her Senator

December 21, 2010 3 comments

This guest post is by Shannon Knall, the Autism Speaks Connecticut Chapter Advocacy Chair and mother of three boys – her oldest has autism.  She worked with state legislators to pass the autism insurance reform bill in 2009.

I first met Senator Chris Dodd at a press conference in Washington DC in 2008.  I have lived in Connecticut for almost my entire life. Senator Dodd is a political icon here and as a result I was certainly intimidated by the mere thought of meeting him. How I wound up standing right next to him with an autism community delegation from Connecticut I have no idea, yet there I was.

Flashbulbs lit up as he entered the room. Without missing a beat, he strode to the podium and greeted Autism Speaks Co-Founders Bob and Suzanne Wright. He then turned to me. With an outstretched hand and a warm smile, he introduced himself.  We had a brief exchange as I explained to him that my son had autism and thanked him for his ongoing service to the disability community.

He looked at me and said, “Moms like you make me want to do everything I can to help. Never stop being the voice for your son.”

I haven’t.

Neither has Senator Dodd.

Without a doubt, his retirement will be a palpable loss for our community.

Before his last term comes to an end in January, he took a final stand for the autism community through the introduction of the Combating Autism Reauthorization Act (CARA) of 2010 (S.4044).  This Act furthers the Senator’s work which he began through the Combating Autism Act (CAA), signed in to law in 2006. The , CAA, among other provisions, created a desperately needed focus on research in to the cause, treatment and cure for autism.  That original law will sunset in September of 2011 unless it is reauthorized by Congress to continue providing funding necessary for research and services and if that happens the momentum that has built up since December 2006 will sunset with it.

Prior to Senator Dodd’s introduction of the CAA, autism was an intermittent blip on the federal legislative radar.  Our community had been in desperate need of a comprehensive plan, one that is broad in scope but specific in delivery to address the spectrum of needs of our loved ones with autism.  The historic unanimous passage of the CAA changed all of that. With passage of CARA comes an  opportunity for autism to remain a continued focus of political attention in addition to matching more aggressive action in response to the autism epidemic.

As your constituent and as an advocate for my son, thank you Senator Dodd for your unwavering compassion for our families in our community not only here in Connecticut but nationwide, and the courage you had, once again, to be our champion.

For more information on the Combating Autism Reauthorization Act of 2010, please visit www.AutismVotes.org/CARA.

Why is autism more common in boys?

December 21, 2010 4 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

In 2009, researchers discovered an autism risk gene on chromosome 17 called CACNA1G that is more common in boys than girls. The gene is partially responsible for regulating the flow of calcium in brain cells. Calcium is very important in transmitting information and having too much of the mineral may cause the overexcitability of neural circuits that we have seen in autism. This is a promising finding, though there have been other suggestions. Some researchers have suggested that females are less vulnerable to developmental disorders because of their neurochemistry. Also, autism risk genes have been found on the X chromosome. Since girls carry two X chromosomes, they have two copies of these genes, and one of the genes may not carry the mutation. This may help to protect them against the effects of an X-linked mutation. Although we don’t have a firm answer yet, the gender imbalance in autism diagnoses is a clue that researchers are pursuing actively.

Are you aware of any research being done on diet and its affect on children w/ autism? If so, what has been learned?

December 21, 2010 3 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

To date, there have only been a few published rigorous clinical trials examining the efficacy of dietary treatment (specifically, the gluten-free, casein-free diet) for improving symptoms of ASD. These have been negative or inconclusive, but were based on very small samples. More recently, Dr. Susan Hyman at the University of Rochester reported the results of a double-blind, randomized trial in which children who were on the diet were challenged with foods containing casein and gluten. Dr. Hyman examined factors such as attention, sleep and the stool of 22 children with ASD both challenged and unchallenged and found no benefit from the diet. Dr. Hyman stressed that her findings don’t rule out the possibility that there may be subgroups of children who benefit. Autism is a very heterogeneous condition. More research is needed.

How can families participate in research studies?

December 21, 2010 Leave a comment

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

Great question! We hope more families wish to get involved in research. One easy way to get started is through an online portal called the Interactive Autism Network (IAN) at ianproject.org. This site allows you to participate in research from your home. You can also find studies and participate in programs supported by Autism Speaks. If you are interested in a clinical trial (which is not just about treatment, but also diagnosis, identifying subtypes, etc.) you can find more information at clinicaltrials.gov.

Any link between vaccines and autism? Put this issue to rest once and for all, one way or the other?

December 21, 2010 9 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

We really wish it were that simple. Several epidemiological studies have explored whether either the MMR vaccine or thimerosol, a preservative previously used in vaccines, are linked to autism, and these studies have not supported a link. However, these studies were not designed to identify effects in a small population of potentially vulnerable children due to rare genetic and/or medical conditions. We are seeking to understand if vulnerable populations exist, and if so, how we identify them early so they can be protected from public health threats in the safest manner possible. For more information please see our vaccine statement and an interview with Dr. Geraldine Dawson, Autism Speaks’ Chief Science Officer, about vaccines and autism.

Has the rate of autism truly increased in the last 50 years or so or is it just that the classification of autism has gotten broader and as such the prevalence seems larger?

December 21, 2010 4 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

In the last two decades reported autism prevalence has increased by more than 600% and a number of studies have sought to investigate the cause(s) of this dramatic increase in autism prevalence over time. Recent findings suggest that at least a portion of the increase in prevalence can be attributed to changes in diagnostic practices, earlier age of diagnosis, and increased awareness of autism over time. However, converging evidence also suggests that while these factors account for a portion of the increase, they cannot alone explain the dramatic rise in autism prevalence. Thus genetic and/or other environmental factors likely play a role and are the subject of numerous research projects currently supported by Autism Speaks.

Is there empirical evidence that parental age is a contributing factor to giving birth to a child with autism?

December 21, 2010 2 comments

“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community.  We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.

A number of recent publications investigating the relationship between parental age and autism have demonstrated that older parents are at increased risk for having a child with autism. This is not surprising since increased parental age is associated with a slightly increased risk for other developmental disorders, as well. Grether, et. al. reported in 2009 that parental age and particularly maternal age is a significant risk factor for autism. The authors found that a 10-year increase in maternal age increased the chances of having a child with autism by 38% and mothers over the age of 40 were at highest risk. Other studies, such as a recent study by Hertz-Piccioto, found that the risk for autism spectrum disorder (ASD) in older mothers was lower than 38%. King and Bearman, et. al. similarly found that older mothers and fathers were at increased risk of having a child with autism with the largest risk among mothers aged 40 and over. Since the risk for ASD is low, the risk for ASD in older mothers, although increased, is still relatively low. The underlying mechanism behind the relationship between increased parental age and risk for autism is currently unknown and under investigation.

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