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Wrong Planet’s Alex Plank Interviews Peter Bell of Autism Speaks at IMFAR in San Diego

May 18, 2011 1 comment

Alex Plank of WrongPlanet.net sits down with Peter Bell of Autism Speaks at IMFAR 2011.  Peter and Alex have a discussion on a balcony that overlooks the bay. This year’s International Meeting for Autism Research was held in San Diego, the site of the inaugural meeting.

Peter Bell, the Executive Vice President for Programs and Services, reflected in a blog post, ‘Stakeholders Make Their Mark at IMFAR 2011.’

Stakeholders Make Their Mark at IMFAR 2011

May 16, 2011 4 comments

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

The International Meeting for Autism Research (IMFAR) celebrated its 10th anniversary this year. To commemorate this special occasion, the organizers returned to San Diego the site of the inaugural meeting in 2001. Although the city pretty much looks the same (one notable exception is the new Petco Park baseball stadium downtown), the landscape of IMFAR has undergone radical changes. While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives.

The most notable difference between IMFAR 2001 and IMFAR 2011 is attendance. This year’s meeting attracted almost 2000 participants compared to just 250 when IMFAR began. The original meeting was a satellite to the very large Society for Neuroscience conference. Now IMFAR spawns its own satellite meetings. More than 1,100 research abstracts were presented this year over the course of three days. Ten years ago, there were fewer than 200 abstracts and the meeting lasted just a day and a half. Without question, the quality of research has undergone major transformation during the past decade.

The idea to create IMFAR was first conceived and supported by the stakeholder community. In fact, the first several years of IMFAR were organized by CAN and NAAR, which later merged with Autism Speaks, with strong support and guidance from the MIND Institute at UC Davis. Eventually, the International Society for Autism Research (INSAR) was formed to give autism scientists and students a membership organization to host the meeting and further develop the field.  INSAR is now responsible for producing IMFAR each year while Autism Speaks and several other advocacy organizations continue to play a critical role and provide financial support in the form of sponsorships.

Two years ago, INSAR President David Amaral formed a Community Advisory Committee to ensure the stakeholder community is well represented and positively contributes to the success of the Society and its annual meeting. The Committee is chaired by Peter Bell from Autism Speaks (also a parent advocate) and co-chaired by self-advocate John Elder Robison, author of “Look Me in the Eye” and “Be Different”. Total membership includes six parent advocates, two self-advocates and one graduate student.

This year’s IMFAR meeting included many activities geared toward the stakeholder community. For the second consecutive year, one of the local academic institutions (University of California, San Diego) hosted an IMFAR Community Conference the day before IMFAR started. Over 300 attendees including parents, educators, therapists, clinicians and students attended this year’s event. One of the highlights of the conference was a panel of teens with autism who talked about their experiences living on the spectrum.

Once IMFAR opened on Thursday, the spotlight focused on several advocates who were honored at the Awards Reception. In addition to awarding Dr. Margaret Baumen from MassGeneral Hospital with the Lifetime Achievement Award, the INSAR board of directors created a new annual award called the INSAR Advocate Award for the important contributions that advocates make to research. Appropriately, the inaugural award was given to the founders of the organizations that started IMFAR ten years ago, Portia Iversen and Jonathan Shestack from Cure Autism Now (CAN) and Karen and Eric London from the National Alliance for Autism Research (NAAR).

The INSAR board also gave a Special Recognition Award (posthumously) to Bernard Rimland, PhD who is widely recognized for his discovery of the powerful evidence that autism is a biologic disorder and not due to poor parenting. Dr. Rimland later formed the National Society for Autistic Children, which is now known as the Autism Society of America, as well as the Autism Research Institute. This honor was especially fitting because San Diego was his home. His wife Gloria and son Mark were on hand to accept the award and enjoyed a standing ovation in memory of Dr. Rimland’s significant contributions to autism research.

A special surprise greeted those who attended the annual reception at the conclusion of day one. Under beautiful sunny skies on the rooftop deck of the Manchester Hyatt Hotel, IMFAR attendees were treated to a wonderfully entertaining performance by some of the stars from “Autism: The Musical”, the Emmy-winning HBO documentary. Not surprisingly, autism researchers know how to have a good time thanks to the musical talents and personalities presented by these teens.

On Friday, the annual Stakeholder Networking Luncheon, sponsored by Autism Speaks, was held to encourage greater interaction between the autism researchers and members of the stakeholder community. This year’s event attracted over 90 participants, up from about 60 the year prior. Most of the attendees were parents or grandparents, with about a dozen participants being autistic individuals and another dozen being siblings of a person with autism.

The luncheon included presentations by both scientists (INSAR President David Amaral from UC Davis, IMFAR Keynote Speaker Ricardo Dolmetsch from Stanford University and ATN Clinical Coordinating Center Director James Perrin from MassGeneral Hospital) as well as stakeholders (parent/researcher Sarah Logan from Medical University of South Carolina and autistic self-advocate/author John Elder Robison). Stay tuned for video highlights of the luncheon by Alex Plank and his crew from Wrong Planet.

During her brief remarks at the end of the luncheon, Sarah Logan, who is a PhD student at Medical University of South Carolina as well as the mother of a 14 year old boy with autism, referenced a quote from Albert Einstein:  “A man should look for what is, and not for what he thinks should be.” She eloquently pointed out that as stakeholders, it’s natural (and easy) to become emotionally invested. Yet IMFAR presents science as science – with passionately curious individuals who can find harmony between the emotionally invested and the empirically driven.

Sarah further explained: “At the end of the day, one thing we all have in common is that we want a better quality of life for our loved ones living with autism. And that comes with knowledge. Knowledge is power. IMFAR is an amazing place to both gain, and share knowledge that will lead to improved quality of lives for all of those involved – parent, individuals, caregivers, families and siblings.”

Amen.

Understanding Autism: Autism Speaks Co-hosts New Jersey Seminar with the Autism Society and CDC

May 5, 2011 1 comment

In recognition of Autism Awareness Month, Autism Speaks co-hosted a seminar with the Autism Society and Centers for Disease Control (CDC) to reflect on advancements made in understanding Autism Spectrum Disorders (ASDs) since the creation of the CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) a decade ago. The seminar, Autism Spectrum Disorder: Understanding an Urgent Public Health Concern, was held in collaboration with the New Jersey Department of Health and Senior Services, and the state’s leading autism research and advocacy organizations at Children’s Specialized Hospital in New Brunswick, NJ.

Designed as a learning experience for partner organizations, the seminar provided a forum to evaluate the progress made in understanding autism during the past decade and future challenges at the community, state and national levels. In addition to representatives from locally based advocacy groups, speakers included Congressmen Frank Pallone, Jr. and Chris Smith, New Jersey Department of Health and Senior Services Commissioner Mary O’Dowd, NCBDDD Director Dr. Coleen Boyle, the Autism Society’s Vice President of Public Policy & General Counsel Jeff Sell, and Peter Bell, Autism Speaks’ Executive Vice President of Programs and Services. Bell provided background on Autism Speaks’ ongoing research and the role science has played in shaping our perception of ASDs. Discussions also covered a variety of issues facing individuals with autism, such as public health approaches to ASDs and ways to make a difference in the lives of families affected by this public health crisis.

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Click here to view the slideshow presented ‘Autism Spectrum Disorders: Understanding an Urgent Public Health Concern.’

Holly’s Gift to the Autism Community

April 26, 2011 19 comments

This is a guest post by Peter Bell, the executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division.

Peter Bell, Debra McElwain, Jason McElwain, Holly Robinson Peete, Zev Glassenberg, and Justin Kanew


For many of us in the autism community, April has become our holiday season. This year, one of the many gifts we received was extensive autism coverage on the popular CBS day time show “The Talk.” It’s probably no secret who played Santa Claus for us behind the scenes. It was none other than Holly Robinson Peete, co-host of “The Talk,” co-founder of the HollyRod Foundation and Autism Speaks Board Member. Holly and her husband former NFL star Rodney Peete  are also the proud parents of four beautiful children including RJ who is 13 years old and has autism. “Santa Holly” started planning the autism series months in advance which is obvious when you see all the segments they produced for the show’s Autism Awareness Month.

Holly and her co-hosts kicked off the month on April 1st with a beautiful video about the Peete family’s personal journey with autism. After an emotional chat with her fellow cast members, Holly invited me to talk about what families can do following a diagnosis. We discussed the basics of autism, what it is, what causes it, and what resources are available to families including Autism Speaks’ 100 Day Kit. At the show’s conclusion, audience members were given special blue t-shirts from “The Talk” and many were brought up on stage. After Holly and co-host Julie Chen urged President Obama to light up the White House blue, the ladies of “The Talk” did a countdown which culminated in transforming the set to blue in honor of Autism Speaks Light It Up Blue initiative.

The second installment of “The Talk’s” Autism Awareness Month took place on April 8th and featured an Autism Daddy Roundtable with “Criminal Minds” star Joe Mantegna and Holly’s husband Rodney Peete. The conversation about a dad’s perspective on autism continued with Jimmie Smith, a single father from Baton Rouge who raising two children on his own. He described coming to terms with his son’s autism diagnosis. Although mothers are most often the parent who takes primary responsibility for caring for a child with autism, Holly wanted to shine a light on the important role that fathers can and should take, a view not often portrayed.

On April 15th, Holly introduced us to two amazing teenagers who have overcome the challenges of autism to show the world their remarkable talents. Carly Fleischmann shared her remarkable story that captured the world’s attention when, after never speaking a word, she found her “voice” through the keypad of her computer. We then met 19 year-old Winfred Cooper and his father who shared Winifred’s incredible story accomplishing a 67 yard touchdown in high school football game. The show’s autism segment ended with pediatrician Ricki Robinson, MD offering real and practical solutions about transitioning through the teen years. Dr. Robinson is the author of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child and serves as a member of the Autism Speaks Scientific Review Panel.

The fourth and final autism segment took place on April 22nd.  “Amazing Race” teammates Zev Glassenberg and Justin Kanew joined Holly and Julie to chat about doing another season as well as the triumphs and challenges they faced with Zev having Asperger’s Syndrome. The next segment featured YouTube sensation Jason McElwain (J-Mac) who shared his inspirational story from 2006 when a high school basketball game changed his life forever. Accompanied by his mom Debra, Jason talked about his life today and his hopes for the future as an adult with autism. Finally, Holly and Leah invited me back to talk about the services adults will need and what society can do to help people with autism and their families lead more fulfilling lives. This afforded me the opportunity to highlight the recently introduced Autism Speaks Transition Tool Kit.

Perhaps the best segment of the month is one that most people haven’t seen. After the third show featuring the amazing teens with autism, Holly shared her gratitude with the studio audience while the cameras were still rolling. Throughout her “autism journey,” Holly has always taken a strong stand for autism. She genuinely believes in those who live with autism and wants to shine a bright light on their special talents and skills. She believes in listening to people with autism and helping their families care for them as best as possible. In addition to being remarkably talented, Holly is one of the most compassionate and generous celebrities in Hollywood. On behalf of the autism community, thank you “Santa Holly” for giving us the greatest gifts we could ever ask for – believing in our children and advocating for their futures.

Holly Robinson Peete and Peter Bell

A Conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different

April 11, 2011 2 comments

This is a conversation with Peter Bell, Executive Vice President of Autism Speaks, and John Robison, Author of Be Different: Adventures of a Free-Range Aspergian with Practical Advice for Aspergians, Misfits, Families & Teachers
(Crown Archetype, March 22, 2011)
_______________________________________________________________________________

Peter Bell: Be Different has a lot of wonderful advice and insights for young people who struggle to fit in. But for those with more severe forms of autism, “being different” may not be their greatest challenge. Does your advice change at all for kids and families who are living with challenges of classic autism?

John Robison: Be Different is written for people with Asperger’s and what I call “other geeks and misfits.” The principal difference between those folks and others with traditional autism is that they do not have the severe language challenges.  The “verbal but socially impaired” population this book speaks to represents the largest group of young people in special needs education today.

There are millions of young people who we might say, “look and sound normal,” yet they struggle to fit in. Until now, no book has spoken to that huge audience. I hope to change that with Be Different. Individuals with severe language impairment may well share the challenges described in this book, but the language and communication issues will be of overriding concern.

PB: If you had been diagnosed with Asperger’s syndrome earlier in life, how do you think your childhood and adolescence would have been different? Do you think your parents or teachers would have treated you differently?

JR: I hope so! Certainly one of the basic tenants of special education is that we recognize the differences in our kids and develop individualized education plans to bring them along. In my day, my differences were dismissed as defiance or laziness. That led to failure in school and low self-esteem that haunts me to this day.

If my teachers had known about Asperger’s, I might have been assigned a guide to keep me focused and moving through school. I might have been given study materials that were actually appropriate for my skill level. With changes like that, I’m sure I could have graduated high school and gone on to complete college. Who knows where life would have led me then?

PB: You’ve met my teenage son, Tyler, a few times, and you two seem to have a strong connection. He was immediately drawn to you, and you showed a wonderful desire to connect with him. In fact, you were decidedly social with him. Do you find yourself drawn to other autistics in a different way than “nypicals?”

JR: Yes, I do. I don’t know how to explain that except to say some of us autistic people recognize our own kind at a very elemental level. When you think of sorting out people by similarity you probably imagine grouping people by height, or race, or even hair or eye color. What people like Tyler and I see in each other is immeasurably more subtle than those superficial traits, and we seem to match each other up instinctively.

I connect with many autistic people, and they with me. It happens enough that there’s no denying the reality of the phenomena, but I can’t explain exactly what we sense in each other or why we find it comforting.

PB: My wife, Liz, has commented that your gaits (how you walk) are pretty similar, but your “autisms” are very different. Why do you think that is the case?

JR: Scientists believe there are many biological and environmental paths into autism. In the next few years we may end up identifying over a thousand genetic variations that are implicated in autistic disability. All those variations lead to a similar set of differences within the brain and the communication and behavioral challenges we observe.

Those brain differences may have innumerable external manifestations. Our distinctive walk may be one of them. Some scientific studies have shown autistic people have uniquely different patterns of speech and characteristic “nonstandard” facial expressions or eye movements. More and more of those characteristics are discovered every day, and the “gait of autism” may one day be a diagnostic feature.

That deep-rooted commonality is one reason I think this book’s appeal is so universal to people with neurological differences. The only caveat to that is that profound speech challenges will always take precedence over the social behavior that is Be Different’s focus.

PB: You mentioned at one point in your book that “language came to me naturally, . . .  wisdom was really tough to obtain.” Interestingly, I think the opposite is true of my son with autism—at times he seems to have wisdom beyond his years but his language is severely impaired. What do you make of this difference?

JR: That is the great puzzle of autism. It’s a mystery why many people with Asperger’s share my gift of exceptional clarity of speech combined with profound social disability, and others with traditional autism may have no speech at all. It almost seems opposite, and I can’t explain it except to say autism touches each of us differently.

Tyler’s inability to hold a normal conversation means he has a lot of time to reflect inwardly, to think about the world around him. I have written about how my own social isolation helped me develop the reasoning power that got me where I am today. Given that situation it’s no surprise he seems wise; he has a lot of time to watch and ponder, freed from the constraints of speaking whatever comes to mind from moment to moment. He’s a thoughtful person; it’s just that his language challenges prevent us from hearing and sharing those thoughts much of the time. My situation is opposite. My childhood command of language was so good that people expected matching wisdom, far beyond my years, and it just wasn’t there.

PB: You mention that “Autism in its many forms is not a disease.” However, we know from historical experience that autism can be caused by infections (for example, maternal rubella or influenza during pregnancy) or other environmental factors (for example, thalidomide or valproic acid use). Research also shows that about one-third of the current population of children with autism have a regressive form. Although the terms “disease” and “disorder” are fairly synonymous and generally mean deviations from accepted or “normal” physiological or psychological functioning, is it possible that some forms of autism could be “abnormal” rather than just different?

JR: Sure. I use “difference” rather than “disease” because the latter word suggests a temporary condition, which autism is not. Some diseases can be cured; others kill you.  Autism is neither curable nor lethal.

The other consideration is that autism—being a brain disorder—becomes woven into our very being. Our autistic differences shape the way our brain wires itself as we develop and live in response to life’s events. Even if one could magically remove the underlying autistic difference, the “different brain wiring” would necessarily remain. That’s why I don’t think talk of a cure is realistic, while at the same time I work very hard to promote the development of tools, treatments, and therapies to remediate the specific components of autistic disability.

As promising as the future may be, at this moment, those of us with autism must make our best life the way we are today. That is the essential message of Be Different.

PB: Thank you for your description of how predictability is a critical condition for many on the autism spectrum. We think that this may explain why Tyler is fearful of dogs and other domestic pets while at the same time being fascinated by them. He is much calmer with animals on a leash than those that are running free, a distinguishing feature that he figured out himself. Do you think the predictability issue explains his behavior?

JR: I know routine and predictability are really important to lots of autistic people, me included. I believe anxiety is one of our dominant emotions, and in the case of an animal, that anxiety is going to be markedly reduced if the animal in question is under control in some fashion.

Several stories in Be Different show how I addressed those issues in my own life.

PB: Have you started thinking about book number three yet? If so, what do you plan to cover?

JR: My third book is tentatively titled Raising Cubby. It’s a tale of fatherhood, Asperger’s, chemistry, and the Bureau of Alcohol, Tobacco and Firearms. I hope it proves to be an entertaining and enlightening book.


The Talk Lights It Up Blue on April 1

April 3, 2011 4 comments

 

On Friday April 1, the set of the popular CBS daytime talk show “The Talk” provided a unique and special venue to Light It Up Blue for World Autism Awareness Day. To kick off the show’s four segments on autism during April, co-host and Autism Speaks board member Holly Robinson Peete shared a beautiful video about her family’s personal journey with autism featuring her 13-year-old son RJ. After an emotional chat with her fellow cast members, Holly welcomed Autism Speaks Executive Vice President Peter Bell to talk about what families can do following a diagnosis. They discussed the basics of autism, what it is, what causes it, and what resources are available to families including Autism Speaks’ 100 Day Kit. 

At the show’s conclusion, audience members were given blue “The Talk” t-shirts and many were brought up on stage. After Holly and co-host Julie Chen urged President Obama to light up the White House blue, the ladies of “The Talk” did a countdown which culminated in transforming the set from red to blue in honor of Autism Speaks Light It Up Blue initiative.

On Friday, April 8 the next autism segment will highlight fathers including Holly’s husband, former NFL player Rodney Peete and actor Joe Mantegna, start of the CBS hit show “Criminal Minds.” The following Friday (April 15), the segment will showcase special teens with autism who have overcome challenges. A final segment on April 22 will focus on the transition from adolescence to adulthood. Bell will return as a guest along with former high school basketball phenom Jason McElwain who is now 22.

Autism Speaks thanks Holly and the producers of “The Talk” for devoting so much of their time to covering these important topics for the autism community.

Light It Up Blue is TOMORROW

March 31, 2011 11 comments

The countdown is on to April 1st! World Autism Awareness Month is in reach and we are so excited to Light It Up Blue! Every day, leading up to the big day we’ll post highlights, a special interview and much more!

Tune in for CBS’s The Talk

CBS’s popular talk show “The Talk” will feature the first of four weekly segments about autism on Friday’s show. 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. Peter Bell will join her!

Who’s Lighting It Up Blue?

Autism Speaks would like to thank the Empire State Building for the special lighting on the evening of April 1, 2010 in celebration of the third annual United Nations World Autism Awareness Day on April 2. Learn more about the Empire State Building at www.esbnyc.com. The Empire State Building design is a trademark of ESBC and is used with permission.
Visit www.lightitupblue.org to get pledge your support and get involved!

 

 

Community Spotlight

 

Today’s virtual interview is with Lisa G. from Little Egg Harbor, N.J.

Autism Speaks: What are you Lighting Up Blue?
Lisa G.: My House!

AS: Why are you lighting your home blue?
LG: My daughter has Aspergers and I want to show my support for her and everyone else afflicted and affected by autism.  I also want to share my support with my neighborhood/community. I am working on getting every home on my block to “Light it Up Blue” by offering them free blue light bulbs!

AS: How did you go about lighting up your block?
LG: I purchased my bulbs at Home Depot and am searching for blue Christmas lights to wrap around my porch and front of my home.

Are you lighting up blue too? Take this quick and easy survey to tell us how!

RSVP to Light It Up Blue!

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