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The Month in Review: Autism Speaks October 2011 Impact

November 3, 2011 5 comments

Last month we tried an experiment… we attempted to recap the most important, relevant things going on around Autism Speaks to give you some insight into the breadth and depth of our organization; and to solicit your feedback. Thank you for your incredible responses and questions!

One of the more common questions we get (similar to the one that Kristine on Facebook posted) is, “What can Autism Speaks do to help my family today?” It’s a great question!  We understand that families are struggling and are looking for help and information. Using an “evidence-based science” approach, we seek to deliver useful information, tools, and resources for families that they can immediately use, such as the 100 day and transition kits. Programs such as Advancing Futures for Adults with Autism provide resources across the lifespan. Not only do we provide a wide collection of tools, we also staff the Autism Response Team which is available to answer your questions via email, phone and online chat! They can be reached via email at familyservices@autismspeaks.org or 1-888-AUTISM2. Kristine, that’s how we help families today, while we continue to increase awareness about autism, advocate for more funding for research and services, and fund innovative research projects that are developing improved treatments and services for people with autism.

If you know of other things that might be helpful to another family, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Illustration by Gracia Lam

Illustration by Gracia Lam

  • We’ve got an MD on staff!  This month, we hired Joe Horrigan, MD to head up Autism Speaks’ medical research.  His charge is to spearhead the development of new medicines and other treatments that can help people with autism communicate and learn better and address some of the medical conditions associated with autism, such as GI and sleep problems.  Welcome, Dr. Horrigan!  Look for him on our Science blog.
  • Leading the Way Autism Speaks is leading the way in developing an enhanced Autism Tissue Bank that will accelerate the discovery of the causes and new treatments for autism.   Autism Speaks Autism Tissue Program (ATP) featured prominently in a feature story in the prestigious science journal, Nature, on the tissue bank shortage and how a small handful of organizations such as Autism Speaks are working to fill the void and speed research that can help individuals and families struggling with neurodevelopmental disorders such as autism.
  • World’s Largest Genome Library will be created by Autism Speaks and the Beijing Genome Institute.  Autism Speaks and  announced an agreement to create the world’s largest library of sequenced genomes from persons with autism spectrum disorders (ASDs). Multiple stories have appeared in the U.S. and China. The journal Nature interviewed Andy Shih on the agreement, as did Genome Web Clinical Sequencing.
  • Got Hours? Geri Dawson held her first “Office Hours with the Chief Science Officer” which featured guest host and renowned geneticist Steve Scherer, PhD, who addressed the question: What do the new findings in genetics mean for my family?  Dr. Dawson will be holding monthly office hours and the next one will be on the topic of new approaches to early intervention, scheduled for the first week of December Read the transcript.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

  • Employment October is National Disability Employment Awareness Month. We highlighted the Jay Nolan Community Services Employment Tool Kit that was funded by one of our Family Services Community Grants. Other employment-related activities included question of the week on Facebook and live chats with:
  • New Toolkit Alert New Tool Kit Alert – in an effort to provide information and encouragement to all people with individuals with autism in their lives, Autism Speaks has several new Family Support Tool Kits. The purpose of each kit is to help teach family members and friends more about autism and provide resources and supports to each group. New kits include:
    • Parents
    • Siblings
    • Grandparents
    • Friends

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

Signing in NY

Signing in NY

  • New York Autism Speaks Co-founders Suzanne and Bob Wright stood alongside Gov. Andrew Cuomo as he signed legislation making New York the 29th state to enact an autism insurance reform law.  The New York law is one of the strongest in the nation, setting no caps on age or visits for behavioral treatments. Governor Cuomo credited Autism Speaks for its leadership role in winning enactment of the legislation.
  • California We (all of us) did it! A major campaign was launched to ask Governor Brown to sign SB.946, the autism insurance reform bill, into law. Because of California’s significance as the most populous state, we asked advocates in the other 49 states to participate by recruiting their friends and family in California to participate. Thousands of emails were sent into Governor Brown and over 1,000 people left comments on his Facebook page as well. Every possible method to get through to him was deployed, including a successful political cartoon campaign. The cartoon was printed as 750 posters and distributed at the Oct. 9 Sacramento Walk, the day the bill was signed by Governor Brown making California the 28th state to enact reform.
  • Michigan Our attention has now turned to Michigan where we are urging the state’s legislative leadership to move a pair of autism insurance reform bills before the year’s end. We need your help! If you are in Michigan, or know someone who is please text “AVotes” to 30644 and we’ll alert you when we need your help!
  • Autism Law Summit The 6th Annual Autism Law Summit attracted 100 activists from 33 states to Salt Lake City. The event highlights efforts to obtain insurance benefits for necessary autism treatments through legislation, litigation, and encouraging employers with self-funded plans to include the benefit for their employees. During the summit, we celebrated Arkansas, California, Rhode Island, Virginia and West Virginia for enacting reform bills during 2011.

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

60 Minutes Apps for Autism

60 Minutes Apps for Autism: image from CBS

  • Apps for Autism The producers of 60 Minutes consulted extensively with Chief Science Officer Geri Dawson and VP of Scientific Affairs Andy Shih in preparing a special segment on autism applications for communication, which aired Sunday, October 23rd. The full show can be found on the CBS News website.
  • Parents Magazine The October 2011 issue of Parent Magazine featured an interview with Autism Speaks Chief Science Officer Geri Dawson in an article entitled “Understanding Autism.” The piece encouraged parents to pursue an early diagnosis of autism in their children and highlighted the beneficial outcomes that early intervention and treatment can bring to a child diagnosed with autism.  To read an excerpt from the article, click here: http://www.parents.com/toddlers-preschoolers/health/autism/autism-diagnosis/
  • Extreme Makeover: Home Edition On Friday, October 28, ABC “Extreme Makeover: Home Edition” aired an episode featuring the McPhails, an Oregon family with two sons affected by autism. In addition to tackling home improvements, the EMHE team worked with Autism Speaks to rally the local community to raise autism awareness in honor of the family. To watch the episode click here: http://abc.go.com/watch/extreme-makeover-home-edition/SH559052/VD55150625/mcphail-family-part-2

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

New Website for Autism Researchers (psst: You’ll like it too!)

October 19, 2011 1 comment

Ready to wonk out on autism science in a very cool way? The Simons Foundation Autism Research Initiative (SFARI) has launched a very slick new website. It’s aimed at scientists actively researching autism. But if a little technical language doesn’t turn you off, we think you’ll like it as much as we do. Congrats, SFARI folks. Check it out, Autism Speakies!

 

The Month in Review: Autism Speaks September 2011 Impact

October 4, 2011 6 comments

One of the big challenges we have as an organization is showing the impact we have  across the four pillars of our mission: Science, Family Services, Advocacy and Awareness. In fact, so much is going on that we are going to aggregate some of the most important happenings once a month.

If you know of things going on that we aren’t including, please SHARE them by leaving a comment! We want to know what you think is important.

Science

Autism Speaks

  • Science Pressents… We presented ATN-supported research on autism and attention deficit and hyperactivity disorder (ADHD) at the annual conference of The Society for Developmental and Behavioral Pediatrics. The study’s findings – that ADHD symptoms ADHD Symptoms in children with autism are common, problematic and likely undertreated – made national headlines.
  • European Approval On September 13, we received final approval of the European Union Autism Innovative Medicine Initiative (EU-AIMS, a historic Autism Speaks-European Union collaboration to develop new medicines for the treatment of autism. The largest public private partnership of its kind in Europe, EU-AIMS will allow Autism Speaks to establish an international biorepository for research and to integrate our wealth of clinical information with global databases.

Want to dig into Autism Speaks science even further? Visit the science section of our website, and read the latest blog posts from the science department.

Family Services

Download the new Grandparents tool kit from Autism Speaks

Download the new Grandparents tool kit from Autism Speaks

  • Just for Grandparents We launched our Family Support Tool Kit for Grandparents on September 15.  The kit includes topics like:
    • Reaction to the Diagnosis
    • Your role as a Grandparent
    • Support for Your Grandchild
    • Support for Your Family
    • Taking Care of Yourself
    • FAQs from Grandparents
    • Grandparent Stories
  • New Health and Wellness toolkit launched On September 29 we launched a new on-line tool kit called Health and Wellness. This new content is featured on the Autism Speaks website and includes the benefits of exercise for people with autism as well as information about nutrition and sleep.  The photographs used in the slide show were submitted from our Facebook community members! Send us more!!
  • Family Services Committee Meeting On September 15 and 16 the Family Services Committee met to review the top scoring applications for the Family Services Community Grants.  The committee looked for applications that increase the services for people with autism, as well as to expand the field of service providers.  Other factors considered during the review process were innovation and creativity, ability to address the needs of the underserved, replicability, clarity of the proposal, qualifications of the organization, well documented budget and sustainability. As a result of this meeting recommendations will be made to the Autism Speaks board of directors for approval during the December board meeting.

Stay up to date with the latest from Family Services in a variety of ways! Subscribe to our monthly “community connections” newsletter, Bookmark the Family Services page on our website or read Family Services related blog posts.

Advocacy

The White House

The White House

  • Autism Speaks joined with California Senate President Pro-Tem Darrell Steinberg at a series of rallies urging Gov. Jerry Brown to sign an autism insurance reform bill into law. The effort received a boost in late September when the Los Angeles Times urged the Governor to sign the bill in an editorial
  • Michigan has become the primary target for autism insurance reform as a new legislative campaign gears up to enact a bill into law

Want to get more involved with Autism Speaks advocacy efforts? Sign up to become an advocate on www.autismvotes.org or text “AVotes” to 30644 to be added to our mobile alert list.

Awareness

Autism Speaks World Focus

Autism Speaks World Focus

  • Hacking Autism As part of a collaboration on the “Hacking Autism” initiative with HP and the Flutie Foundation, Autism Speaks participated in the World Maker Faire at the New York Hall of Science on September 17 and 18. “Hacking Autism” was launched in June 2011 to seek new ideas for technology applications beneficial to people with autism. At Maker Faire, seven app ideas were announced as finalists to be built by volunteer software developers at the HP Hackathon in October. In addition announcing the “Hacking Autism” finalists, Autism Speaks used the popular tech convention as a platform to disseminate information about its mission and raise autism awareness. Catch up by reading our blog post on Collaboration, technology and making things.
  • Parents Magazine “Wishes” Autism Speaks worked with Parents to develop a “wish” for autism that we would like to see come through within the next decade that will be featured in the October issue of the magazine. On September 15, Autism Speaks and Parents both posted the wish – that every child is screened early for autism – on their social networking sites and asked families to share their wish for autism.
  • World Focus on Autism For the fourth year in a row Autism Speaks brought together more than 20 first spouses and esteemed dignitaries, including 15 ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event was held on September 20at The McCarton School in New York City. We encouraged those in attendance to support our international efforts, including Autism Speaks’ Light It Up Blue campaign in celebration of World Autism Awareness Day, and our Global Autism Public Health (GAPH) initiative. This annual breakfast event, supported by Mrs. Ban Soon-taek, wife of United Nations Secretary-General Ban Ki-moon, is part of Autism Speaks’ ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with autism. See an article highlighting the event published in the Wall Street Journal here.

Want to stay up to date on our awareness efforts? Visit the blog for the latest info… that page is also “RSS” enabled so you can add it to your newsreader!

Autism and ADHD

October 4, 2011 54 comments

Posted by Andy Shih, Ph.D., vice president of scientific affairs for Autism Speaks

As researchers and parents, we’ve long known that autism often travels with attention deficit and hyperactivity disorder (ADHD). What we haven’t known before is why that is. Also, few studies have examined how ADHD affects the quality of life of those with autism.

In the past month, two studies have come together to help connect our understanding of autism with behavioral issues such as hyperactivity and attention deficit. The first study looked at gene changes in ADHD and autism. The second looked at how frequently parents see the symptoms of ADHD in their children and how seriously these symptoms affect their children’s daily functioning and quality of life.

The upshot of the first study is that the genetic changes seen in children with ADHD often involve the same genes that are associated with autism. This finding helps explain why children with autism often have ADHD symptoms. In other words, if these disorders share a genetic risk factor, it’s logical that they often occur in the same individuals. Genetic insights, in turn, can help scientists understand underlying causes and, so, may improve how we diagnose and treat these issues.

The second study, described in our science news section, helps clarify both how commonly children on the autism spectrum are affected by ADHD symptoms and documents how this affects their daily function and quality of life. Perhaps the most notable observation was that, even though over half of the children in the study had ADHD symptoms that worsened both daily function and quality of life, only about 1 in 10 was receiving medication to relieve such symptoms.

Clearly, we need more research on whether standard ADHD medications benefit children struggling with both autism and hyperactivity and attention deficits. However, studies have long shown that these medications improve the quality of life of many children with ADHD alone. Autism specialists such as Dan Coury, M.D., medical director of Autism Speaks Autism Treatment Network (ATN), recommend that parents discuss with their child’s physician whether a trial of such medications could be of benefit. (Dr. Coury co-authored the second study.)

On a deeper level, this research raises a question: Why is it, given the same genetic changes, some children develop autism alone, some develop autism and ADHD symptoms, and some develop neither—or something completely different?

I and other geneticists have seen how a given genetic change can alter normal development in various ways—if it does so at all. We have good evidence, for example, that outside influences affect how and whether autism develops in those who are genetically predisposed to it. These influences include a variety of stresses and exposures during critical periods of brain development—particularly in the womb and around the time of birth.

Still, by better understanding how altered genes produce symptoms—be they hyperactivity or social difficulties—we gain important insights into how to develop treatments that can improve the daily function and quality of life of those affected.

Ultimately there’s no substitute for working with your child’s physician and behavioral specialist to address your child’s behavioral challenges and needs within the context of your goals and values. To this end, the specialists at Autism Speaks Autism Treatment Network have developed a medication decision aid—“Should My Child Take Medicine for Challenging Behavior?”—available for free download on our website. Please let us know what you think.

What do scientists mean when they talk about ‘environmental factors’ that cause autism?

September 30, 2011 34 comments

This week’s “Got Questions?” response comes from Alycia Halladay, PhD, Autism Speaks’ director of research for environmental science.

Research has taught us that there’s no simple explanation for what causes autism. We know that genes play a role, but they aren’t the whole picture. Environment also matters.

However “environment” can be a tricky term, as pediatrician Perri Klass recently noted in her New York Times column. In autism research, we use the word to refer to pretty much any influence beyond inherited genes—not just exposure to pollutants or other toxic chemicals.

In fact, the environmental factors that research most strongly links to autism are influences such as maternal infection during pregnancy (especially rubella), birth complications (especially those involving oxygen deprivation), and parental age at time of conception (dad as well as mom). Parents who wait less than one year between pregnancies may be at a slightly higher risk for having a child with autism. (Conversely, there is strong evidence that mothers who take prenatal vitamins before conceiving reduce the odds that their children will develop autism.)

Clearly, countless fetuses and babies are exposed to “environmental risk factors” such as these without ever developing autism. But if a child is genetically predisposed to autism, it appears that these influences further increase the risk. For this reason, we say that environmental factors increase the risk of autism rather than cause it.

Research has suggested that many other environmental, or nongenetic, factors may increase the risk for autism. But scientists can’t yet say whether these involve direct (versus coincidental) links. Such factors include a pregnant woman’s exposure to certain chemicals such as pesticides and phthalates (commonly found in plastics) or certain drugs such as terbutaline (used to stop premature labor), valproic acid (to control seizures), and some antipsychotics and mood stabilizers. Of course, in the case of medications, any possible increased risk of autism must be balanced against a woman’s medical needs—which can likewise affect the health of her pregnancy and children.

In addition, most environmental factors associated with autism appear to increase risk only slightly and only in combination with other factors such as genetic predisposition.  So it is difficult, in most cases, to pinpoint any one environmental influence. For these reasons, Autism Speaks continues to fund research on a wide range of environmental risk factors. Importantly, the more we learn about how these influences affect brain development, the better we can help the children, adults and families who are affected by autism.

Want to learn more about the research Autism Speaks is funding? On our Science Grant Search page, you can browse studies by topic and location. Finally, if you or your child is affected by autism, please consider participating in one of our clinical studies. Thanks, and please keep sending us your questions.

Inspired: Vision of a Nation, Declaration of a Region, Inspiration for Us All

Post and photos by Michael Rosanoff, MPH, associate director public health research & scientific review

Through the Global Autism Public Health Initiative, our aim is to empower local communities to seek out and protect the human rights and public health of their fellow citizens with autism. This includes cultivating more compassionate societies by enhancing autism awareness, building autism health services to improve access to early diagnosis and intervention, and improving scientific understanding of the prevalence and causes of autism around the world. None of this can be accomplished without collaboration, and every part of this mission can yield benefits to communities beyond those where the efforts are taking place.

In an extraordinary demonstration of collaboration, government representatives from eleven South Asian countries participated in the Conference on Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia and unanimously adopted the “Dhaka Declaration” to the United Nations.

While the Dhaka Declaration provides a roadmap for cooperative autism activities in South Asia, its implications reach far beyond the region. Whether it is written in English or Bangla, whether you are reading it here in the US or abroad, the language is universal and the message is clear–together we can change the future for all who struggle with autism and developmental disabilities.

Below are selected excerpts from the Dhaka Declaration, accompanied by some of the images I captured while visiting schools, hospitals, and centers for individuals with autism and developmental disabilities in Dhaka City and its rural outskirts. It is my hope that the following will shed new light and offer a clearer perspective on why the global work that Autism Speaks supports is critically important, not only to autism communities in Bangladesh and South Asia, but to the global autism community as a whole. It is my hope that these words and these images touch you as they touched me.

Inspired by the Universal Declaration of Human Rights and other relevant international human rights instruments …

Reiterating the provisions of Constitutions of our respective countries safeguarding against discrimination and social exclusion of people on grounds of any disability or condition…


Concerned that, despite increasing evidence documenting the effectiveness of early interventions in improving the overall functioning of the child and long-term outcomes, children and families in need often have poor access to services and do not receive adequate treatment and care …


Deeply concerned at the prevalence and high rate of autism in all societies and regions and its consequent developmental challenges to long-term health care, education and training as well as its tremendous impact on communities and societies…


Recalling that children with developmental disorders and their families often face major challenges associated with stigma, isolation and discrimination as well as a lack of access to health care and education facilities…

Recalling further that even the basic human rights of children and adults with developmental disorders are often abused, in many cases in flagrant violation of existing UN declarations and treaties…

Inspired further by a vision that all individuals with autism and developmental disorders ought to receive adequate and equal opportunities to enjoy health, achieve their optimal developmental potential and quality of life, and participate in society…

(We) Adopt this Declaration with the objective of promoting stronger and coordinated actions in the region and globally towards the improvement of access and quality of health care services for individuals with autism and developmental disorders.

We invite you to read the full Dhaka Declaration and the news announcement by Michael, Andy, and Dana here.

A Message from Geri on Bangladesh

July 29, 2011 5 comments

Dear all,

I thought you might enjoy seeing a few highlights from Andy Shih and Michael Rosanoff’s recent efforts in Bangladesh. This is a country where resources are very low, and there is a great need to protect the rights and improve the treatment of people with autism.  Yet despite few resources, this country is stepping up to improve services for all people with autism in their country.  Saima Wazed Hossain from Bangladesh remarked at a recent United Nations meeting that, if Bangladesh can tackle the challenges of autism, any country can.  Indeed, it was Bangladesh that co-sponsored the UN conference that brought together leaders from many countries, the WHO, and key White House staff to focus on the needs of people with autism.

Andy and Michael, with the help of several experts from the US, are providing technical assistance and helping galvanize the Bangladesh government and other leaders to improve the lives of people with ASD.  What is noteworthy is that this effort requires very little in terms of money from Autism Speaks but can have a transformational effect on an entire country.

All best,
Geri Dawson, Chief Science Officer

Autism Conference Ends with High Hopes

The landmark autism conference ended in the city yesterday as its chief architect, Saima Wazed Hossain, hoped that the two-day meet would generate new hopes among the families in and outside the country. Read more …

Call for quality healthcare for persons with autism

An international conference on Autism Spectrum Disorders and Development Disabilities in Bangladesh and South Asia adopted the “7-point Dhaka Declaration,” with a call for promoting stronger coordinated actions in the region and globally. Read more …

Autism Meeting Ends with ‘Great Response’

The two-day international conference on autism concluded on Tuesday with pledges from the World Health Organization to support Bangladesh in autism care. Read more …

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