CBS’s popular talk show “The Talk” will feature the first of four weekly segments about autism on Friday’s show. April 1 is not only the eve of World Autism Awareness Day, but it is also the first day of Autism Awareness Month. Holly Robinson Peete, co-founder of the Holly Rod Foundation, Autism Speaks Board member, and co-host of “The Talk” will share her personal story about when her son RJ was diagnosed with autism. Autism Speaks Executive Vice President Peter Bell will then join Holly to discuss autism and what families can do after a diagnosis as well as talk about World Autism Awareness Day and the Light It Up Blue initiative.
Read a release from CBS describing the whole series here.
Check your local listings for the time near you!
This post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.
At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. To accomplish this mission, we have devoted much of our advocacy efforts over the last several years to ending the routine discrimination against people with autism by health insurers. To date, twenty-three states have enacted legislation requiring health plans to cover medically necessary, evidence-based autism treatments. Currently, the State of New York sits on the brink of passing what could become one of the most comprehensive state laws passed thus far.
For several years, families, legislators and advocacy organizations in New York have been working diligently towards the passage of meaningful autism insurance reform legislation. S7000B is the product of this mutual effort. Passed unanimously by both the New York Assembly and the New York Senate, this legislation would at long last require coverage of evidence-based treatments like speech therapy, occupational therapy, physical therapy and applied behavior analysis. S7000B also insures that coverage for behavioral therapy cannot be denied because it is deemed educational or habilitative in nature. Just as important, the bill has no annual monetary coverage limitations or limits based upon age. It also contains provisions to ensure that existing services covered under health insurance as well as services provided through an individualized family service plan, an individual education plan or an individualized service plan are continued.
If you don’t live in New York, you may be wondering what this legislation has to do with you. Although this bill originates in New York, advocacy from stakeholders all across the country is critical. Here’s why:
If you happen to live in one of the twenty-three states that have enacted an autism insurance bill, then you know the impact this legislation can have on the families that now or soon will benefit. They will no longer need to worry about using all their financial resources to pay for evidence-based therapies that their children with autism need.
If you live in one of the twenty-six states that have not yet passed autism insurance reform, then you know the heartbreak a family faces when they receive denial after denial from their insurance company for treatments their child needs to live a full life, join their peers in school, and interact with their siblings. And, if you have a health plan that is not covered by state law (if, for example, your employer has a self-funded or ERISA plan), then your help is needed most of all. Enactment of autism insurance reform in New York will mean that our community is one step closer to being able to make the case for reform at the federal level. Federal autism insurance reform will ensure that every family in America will get the insurance coverage for autism therapies that they need and deserve.
At the end of the day, it all comes down to ending the discrimination families living with the challenges of autism face when dealing with health plans. As one New York father pointed out to me recently, individuals with autism are simply looking for equality. He went on to emphasize how this piece of legislation would require coverage for evidenced based treatments, equality in its truest sense. He spoke from an extremely personal place, sharing how last year he was diagnosed with Non-Hodgkin’s Lymphoma. His course of treatment, which was evidence-based, was covered by his health insurance and because of this treatment, he is doing well. He went on to ask the obvious question: why his beautiful nine year-old son with autism was not afforded the same opportunity?
It’s time for this discrimination to stop. You can help by emailing Governor David Paterson and urging him to sign S.7000B into law. He needs to hear from you – as a member of the nationwide community of families and loved ones of individuals with autism – even if you do not live in New York. Please take two minutes to make a difference today.
Please help us today in New York to create a better tomorrow for families in all states. Thank you.
This post is written by Liz Bell, mother of Tyler Bell, who was recently featured in an ABC World News Today segment on preparing adolescents with autism for adulthood. Liz is married to Peter Bell, Autism Speaks Executive Vice President of Programs and Services. They have two other children, Derek and Avery. Liz is a member of the Autism Speaks Family Services Committee and was the primary author of the School Community Tool Kit. In addition, she serves on the Parent Advisory Committee for the Autism Speaks Transition Tool Kit which is under development and scheduled to be launched this fall. Liz is also a representative on the New Jersey Governor’s Council for Medical Research and Treatment for Autism.
Great, we might share the intense teaching and planning required in making the future of a young man with autism a little less uncertain. We can highlight the variable needs of this growing tide of soon-to-be adults with autism.
But “yikes!” How will my 17-year-old son behave in front of complete strangers with a camera in his face all day? What if this complicated message gets garbled, highlighting the challenges but not the gifts, the needs but not the opportunities?
Thankfully, Tyler greeted that camera with a grin on his face, and followed the flow of a familiar daily schedule in his hard working, innocent way. The ABC team turned eight hours of filming into a three-minute segment that helps to profile the needs of young people like Tyler, and hopefully initiates consideration of their place in the world. Now online, the story has sparked a conversation, which is a great thing.
But we need to keep talking. Some online comments outline the variable needs of the autism population – from college graduates who have trouble keeping a job to complex children with no language and few functional skills. We need options for all individuals on this broad spectrum. Other comments offer traditional ‘solutions.’ He can get Medicaid, sign up for get SSI, set up a special needs trust. True, these programs may provide some money, until it runs out, but how do you maximize its ability to provide a meaningful life, to establish supports that will take over once we are gone? You can place him in a sheltered workshop or a group home. Perhaps an option for the handful of individuals for whom there is space and funding, but this old model of isolated care won’t accommodate all of our kids…or be what they want. And that is the part of the conversation that we really need to move forward. How do we create the systems, opportunities and community mindset that will allow all individuals with autism the right to be safe, but also engaged, fulfilled and happy?
During that day of filming, while the rest of us were self conscious, for Tyler the camera was superfluous. But the cameraman was not, quickly noticing that, despite how hard it clearly is for Tyler to learn, he exhibits pride in accomplishment. For him, competence breeds confidence, so we teach him skills that make him feel useful and valued. We strive to fulfill his needs for humor, exercise, beauty, and joy. We want to develop a future that will allow Tyler to grow, not just to be taken care of, and to flourish.
Visioning this is a lot of responsibility for a parent, so we employed group brainstorming in a MAPS session, expertly facilitated by Dave Hasbury of Neighbours, Inc., where we explored Tyler’s strengths, likes, and possible opportunities, to keep us working in what we hope to be the right direction. We are heartened by a team of people who now have a shared perspective of where he might go.
But it is still mostly up to us to make it happen. We learn as we go. We build on strengths and we layer on, tiny step by tiny step, experiences and skills that help to create more independence, more joy. We immerse Tyler in the world and build a community that better understands him. We look to what motivates Tyler, and find ways to use his gifts to provide meaningful contributions to society and a sense of belonging. We reach out for help.
Last year, we asked the friendly owners of our local Rita’s Water Ice store if Tyler might have a volunteer job. We explained that job sampling is a big factor in strategizing for Tyler’s future. Since they had already opened their hearts to Tyler as a frequent customer, they gave him a Rita’s hat and the chance for us to work with him, as he worked for them. This year, it’s a paid job – just an hour or so a week, but an opportunity to punch a clock, have a boss and be ‘professional.’ Does he do the same work as the other teenagers there? No, but they value his smile, the fact that he joins them in dancing when they are so moved, and that he doesn’t pull out his phone to text in the middle of his shift. Yes, these are gifts, as is the perspective of Tyler’s Rita’s bosses, who recognize and celebrate his contributions.
And so Tyler earns a paycheck, the most important predictor of paid work after graduation. But he doesn’t work for that – it’s his favorite Cotton Candy water ice that compensates him for a job well done. And his pride.
After the filming, the rest of our family decided that we aren’t cut out for reality TV – life is complicated enough without having to turn off a mic to use the bathroom. But we would like to continue to be part of this conversation, in visioning meaningful lives for all families living with autism. After all, our children have a right to an amazing future.
In a story scheduled to air tonight, ABC World News Tonight with Diane Sawyer will feature Autism Speaks Executive Vice President of Programs and Services Peter Bell and his family in a segment on preparing adolescents with autism for life as adults. ABC recently spent the day following Peter and his wife Liz at home as they build a transition program for their 17 -year-old son Tyler, who has autism. The segment will highlight the challenges many families face in preparing their children for adulthood when educational entitlements go away and services are limited and opportunities are few. For more information on what Autism Speaks and other organizations are doing to improve the outlook for adults with autism, please visit Advancing Future for Adults with Autism.
Click here to find the viewing time in your area.
This guest post is by Peter Bell, executive vice president for programs and services at Autism Speaks. Peter and his wife, Liz, reside in New Jersey with their three children. Their eldest son, Tyler, has autism.
From the moment my wife and I heard the words “your son has autism,” we knew our lives as a family would never be the same. The concerns and challenges that come with raising a child with autism are many. But the one concern that always lingers, and intensifies when our kids become teenagers, is: what does the future hold for our child?
Our son Tyler is now 17 and we are immersed in planning his future. As we navigate our way through his “transition,” it’s becoming abundantly clear that Tyler’s future, including the ability to maximize his potential and give him a life of dignity, rests largely on our shoulders. There’s no manual to guide us. There’s no pot of money to help us find him a job, establish a home or help integrate him into the community. And we have found very few examples of adults living with autism at Tyler’s level of functioning who are thriving, leading a life of independence and purpose that are making us look forward to the future. Instead we forge ahead like pioneers heading into new territory determined to find him a better life.
A recent documentary, however, has helped reduce our anxiety and inspired cautious optimism about Tyler’s future and what lies before us. “Dad’s in Heaven with Nixon” is an 86-minute film that first premiered on the Showtime Network in early April and is scheduled to re-air on Father’s Day (June 20) at 3 p.m. ET. If you want an inspiring glimpse of what autism might look like as our children reach adulthood, then this movie is a must-see.
You may already be asking, “What does a film about Nixon have to do with autism?” In reality, nothing. The film chronicles the life of a family from New York City who has been living with autism for almost 50 years. The second youngest of five children, Chris Murray was born at a time when the prevailing medical belief was “refrigerator mothers” caused the emotional damage to their children that presented as autism. But in this case, his mother Janice was warm and caring like most moms. She did have a premonition during her pregnancy that things were going to be different with Chris. Unfortunately her instincts were correct and Chris suffered from oxygen deprivation during what turned out to be a very traumatic birth. It wasn’t until years later that he was diagnosed with autism. Through the use of beautifully restored home movies and the insightful narration of filmmaker Tom Murray (the eldest Murray child), we recognize that autism in the 1960’s was pretty much the same as it is today, despite altered hairstyles and fashions of the supporting cast.
Fast forward to present day, Chris is now a 50-year-old man living a purposeful and rewarding life in New Haven, Connecticut. In the early 1980’s he attended Chapel Haven, a transitional residential program serving adults with cognitive disabilities. He graduated from that program well over 25 years ago and he now lives on his own and works two jobs: one at a local hospital and the other at a health food store. During his free time, he is an accomplished artist. His paintings, mostly of buildings and landmarks from his native New York City, are in high demand by art collectors and aficionados, including Gloria Vanderbilt. Although he could easily make a living selling his artwork to the rich and famous, he prefers to work his two jobs and lead a simple life. He is happy and content, safe, living his life mostly on his own. He creates art not for fame or profit, but for the experience of the art itself. Mission accomplished in our book.
Another prominent message of this film, one that will probably resonate with many families in our community, is that autism is just one part of the fabric that shapes the dynamics of a family. Every family has a story, and in the case of the Murrays, we learn that the experiences and attitudes of other family members, in both current and previous generations, have had a profound effect on the lives of everyone in that family. It was not only Chris’ autism that provided a challenge for the Murray family, but the additional layer of mental illness and the devastating damage with accompanying resilience in some, that make this film so riveting.
Which brings us back to the title – “Dad’s in Heaven with Nixon”. Without giving it away, the title comes from a comment Chris makes on camera and a perspective and simplicity that would seem odd to most people – but maybe not so strange to those who share life with a loved one with autism. While talking with his brother Tom many years after his father’s death, Chris shares his insights into death and heaven, concepts that are hard for anyone to grasp, but especially difficult for those on the spectrum. At a time when your heart begins to feel heavy and your eyes want to well up, Chris magically lightens up the moment with his priceless comment. At this instance, it all makes perfect sense.
With Father’s Day right around the corner (Showtime also did a showing on Mother’s Day), here’s an uplifting and hopeful film that all families with a loved one affected by autism should take the time to see. If you’re like me, this is a film that’ll stick with you. And I hope you share the sense of hope, optimism, and, perhaps most important of all, awe at the power of love, that my family experienced.
As Janice Murray poignantly says towards the end of the film: “Love really can make miracles happen.” Now that’s inspiring.
Tune in to NBC’s “Parenthood” next Tuesday, May 18 at 10 p.m./9 Central. The all-new episode, Team Braverman, features members of the family participating in a Walk Now for Autism Speaks event.
Peter Bell, Autism Speaks’ Executive Vice President, was on set in Los Angeles and penned a blog post about his experience. Earlier this season, we spoke with Jason Katims, the show’s writer and executive producer. He tells how having a 13-year-old son with Asperger Syndrome inspired one of the show’s main storylines.
Check your local listings for show information.
UPDATE: Watch the entire episode here on Hulu. Also, the episode is being re-broadcast on Saturday, May 22 at 8 p.m. EDT. Check your local listings for show information.
Watch “The More You Know” PSA starring the cast of “Parenthood,” which aired after the episode.
On April 11-13, 2010, over 30 individuals from a range of sectors and perspectives met in Salt Lake City to provide thoughtful input on the enhancement of the national vaccine safety system. Named the “Salt Lake City Writing Group”, the meeting was convened by the Vaccine Safety Working Group (VSWG) of the National Vaccine Advisory Committee (NVAC). Invited attendees included Peter Bell, Autism Speaks’ executive vice president of programs and services, and Sallie Bernard, Autism Speaks board member and Executive Director of SafeMinds. For the purposes of this meeting, participants were asked to bring their experience and expertise to bear on this issue, but were not asked or expected to represent the official views of their organizations of affiliation.
The NVAC advises the U.S. Department of Health and Human Services (HHS) on issues of vaccine policy. In 2008, NVAC formed a Vaccine Safety Working Group (VSWG) with two charges: first, to review and provide comment on the Centers for Disease Control’s Immunization Safety Office’s draft Scientific Agenda; second, to review the current federal vaccine safety system. Specific to the second task, the VSWG is charged with developing a White Paper (for consideration and possible adoption by the NVAC) describing the infrastructure needs for a federal vaccine safety system.
As part of these efforts, NVAC committed to meaningful public and stakeholder engagement. For the VSWG’s second charge, that process includes both the recently concluded meeting in Salt Lake City and a meeting of a broader group of stakeholders is expected to take place in Summer 2010 in Washington, D.C.
The accompanying memorandum from the Writing Group provides some highlights of the discussion that took place on April 11-13.