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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!

Point to Happy

March 31, 2011 6 comments

Miriam Smith was looking for a way to connect with her grandson with autism. Working with her two daughters—Afton Fraser, who is Griffin’s mom, and Margo Smithwich, who is a photographer, they created Point to Happy, a book for children on the autism spectrum who benefit from visual support.

Why Autism is Important to Me

March 31, 2011 19 comments

This is a guest post by Darrin Steele, the Chief Executive Officer of the USA Bobsled Team and father of a son with autism.

I have spent the better part of my life figuring out how to out-compete other people. I did it as an athlete and now I do it on their behalf as we represent the nation in bobsled and skeleton. I have taken those same skills and applied them to my career, my education and now to my children as I help them succeed. Seems like a pretty basic concept, right? You compete, you try to win, end of story. Not quite. When you drill down a level and ask a few questions, things get a little messy. What do you win? How do you know if you won? How do you define success? Is there only one winner? What does 2nd place get you? What if the competition is weak? What if it is great?

I was taught a valuable lesson on this very topic from a freshman girl on the high school track team I coached while training for the 1998 Olympics. I was competing against the best in the world; so some of these high school athletes provided quite a contrast.  One such athlete was Sara. Sara was a sweet girl and near as I could tell, had no detectable athletic ability whatsoever. Throughout the season, Sara had tried and failed at almost every event she attempted, but she never seemed to get discouraged. In the final meet of the season she told me she wanted to run the 2-mile. When I asked her if she was sure and gently reminded her that she had gotten lapped in the 1-mile race the week prior, she just smiled and said, “Yep, I want to do it.”  So, I reluctantly entered her in the race.

It was painful to watch. My heart was breaking as she ran the final lap by herself. As I waited for her at the finish line, I tried to think of a way to console her after failing in yet another event. I was clapping as she finished when something happened that I’ll never forget. The moment she crossed the finish line, her arms shot up in the air and she looked at me with a beaming smile and shouted, “I did it!” As she hugged me, I finally understood. She had no delusions of beating anyone in that race. She had never run that far before and her goal was simply to finish. We are inundated with medal counts and win/loss records from all around us, but what truly drives us and what truly matters is the challenge we put on ourselves. For some, this internal challenge will result in Olympic medals. For most it will not, but that challenge is no less important. Society loves to help us define success, but the truth is that it is individual and personal. I was feeling sorry for Sara all season, but I was wrong. She may have finished last in every race, but she didn’t lose once. She just might have had a most successful season on that team.

That concept has special meaning during the month of April. April is Autism Awareness month and for thousands of autistic kids, personal challenges are simply part of their lives. In a world where we are wired to win and strive for success, where does an autistic child fit in? The answer is simple. Like with Sara, success is defined by the individual and has less to do with the finish line than the journey it takes to get there. Or, in the words of the Olympic Creed,

[“…the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well."]

Very often, understanding something as complex as autism requires a face and a name. For this, I will introduce my son, Darrin Khan.

He is in kindergarten now and we have essentially thrown out the playbook. Autism has put him more than 2 years behind his classmates. He likes to arrange his toys by color and lines them up in patterns that make perfect sense to him. He can become fixated on certain things and has his share of meltdowns. His speaking ability is improving, but he has a long way to go before he will be having conversations. Most people are satisfied with the idea that this is who he is. Those are all traits that we can attribute to autism and while they are a part of who he is, they are not how we define him. If all you hear are the words he can’t say then you haven’t heard him. If all you see are his limitations, then you haven’t seen him. If all you know is that he is different from other five year olds, then you don’t know him. And that’s too bad, because like most autistic kids, he is amazing.

Those who do know him also know that he loves to laugh and make other people laugh. They know that when he kisses you he might slip you the tongue, and then laugh hysterically at your reaction. They know that he sprints from place to place because he can’t wait for his next adventure; that he says “cookie” all the time because he knows he will get tickled for saying it and that he gets sad when he sees someone else sad. They know that at the age of three he could complete puzzles faster than his older sisters and could memorize entire TV shows and movies. They know he is sweet, his heart is big and he is full of personality.

As we struggle to learn his language and he struggles to learn ours in a world that he doesn’t fully understand, my son continues to teach as much as he learns. He doesn’t have the same hang-ups about his future as we do and he doesn’t really care about competing with other people. He is all about right now. He is about having fun, laughing, getting chased, going for airplane rides, riding his bike faster than we can run, dancing without shame to whatever Wiggles song is playing and living in the moment with no thought of tomorrow.

With autism, the future is unknown. There are plenty of autistic children who are able to overcome enough of their challenges that they can live on their own and thrive in society. There are also plenty who are not able to live independently and need assistance for the rest of their lives. Those are very different futures.

The future will come and we’ll do our best to help make it a great one. He has a long road with no finish line in sight and we don’t know how far he will go or how fast. Our job is to support him along the way and enjoy the ride. After all, that is what being a kid is all about; regardless of the hand life has dealt you.

One in 110 children born today will be autistic. This is a cause that I have a personal connection to and USA Bobsled & Skeleton is proud to be partnered with Autism Speaks. On April 1st and 2nd, the nation will be “Lighting it up Blue” as part of the autism awareness program. Home Depot is featuring blue light bulbs as part of this program and millions of Americans will be lighting up their homes, neighborhoods and businesses in support.

Autism is not the only challenge in the world but for the month of April and for these two days, I am supporting this program and asking others to join me in this effort to Light it up Blue. The idea is not to pity these kids or these families. The idea is to educate society about this disorder and

these strange, unique, misunderstood and wonderful kids who have a few more challenges than the rest of us. Give them some understanding, some patience and every once in a while a little help. At the end of the day, they are still just kids who want to be kids. Let’s help give them that.

For more information about the Light it up Blue, please visit website.

Interest in toys predicts effectiveness of Hanen’s More than Words in toddlers with early autism symptoms

March 31, 2011 3 comments

As part of the Autism Speaks funded Toddler Treatment Network, a multi-site randomized clinical trial was conducted to examine the efficacy of Hanen’s “More Than Words” intervention (Carter, Messinger, Stone, Celimli, Nahmias, & Yoder, 2011).  This is a very important funding initiative, as very few studies provide empirical validation for autism-specific interventions with toddlers who are evidencing symptoms consistent with ASD.  Parents of 62 (51 boys and 11 girls) toddlers with symptoms consistent with an autism spectrum disorder (ASD) between 14- to 23- months of age were enrolled in Boston, Miami, and Nashville.  Hanen’s “More Than Words” was selected for study because there was some previous experimental support for its effectiveness, it is developmentally appropriate for parents raising toddlers, and it is a short-term, relatively low-cost intervention.

This study provided some evidence that parents were able to learn and use new parenting strategies, such as practicing taking turns, encouraging eye contact and modeling simple sentences from the child’s perspective.  However, Hanen’s “More Than Words” was not effective for all children. This is not surprising, given that there is great variability among toddlers with ASD.  Toddlers who played with a limited number of toys prior to beginning Hanen’s “More Than Words” intervention showed more improvement in their social-communication skills following the intervention than those only receiving other community-based treatments. Specifically, they showed more instances of making eye contact, pointing to or reaching for objects of interest and showing or giving the experimenter a toy.  These effects lasted for at least four months after the intervention ended.  Importantly, there was evidence that these children showed gains that were observed in interactions with both parents and an unfamiliar adult as well as based on their parents’ responses to questionnaires.

This report adds to our emerging knowledge about which interventions work for which children with ASD.  It also adds to our understanding of how to match children to interventions that can optimize their development and not waste time enrolling them in treatments that are not well-suited for them.

Co-authors are Alice Carter, professor of psychology at the University of Massachusetts Boston; Paul Yoder, professor of special education at Vanderbilt University; Daniel Messinger, associate professor of psychology at the University of Miami; Wendy Stone, professor of psychology and Director of the University of Washington’s Autism Center; Seniz Celimli, postdoctoral researcher at the University of Miami; and Allison Nahmias, a psychology graduate student at the University of Pennsylvania.  For more information, contact Carter at alice.carter@umb.edu, Stone at stonew@uw.edu, Yoder at paul.yoder@vanderbilt.edu or Messinger at dmessinger@miami.edu.

Carter, A. S., Messinger, D. S., Stone, W. L., Celimli, S., Nahmias, A. S. and Yoder, P. , A randomized controlled trial of Hanen’s ‘More Than Words’ in toddlers with early autism symptoms. Journal of Child Psychology and Psychiatry, no. doi: 10.1111/j.1469-7610.2011.02395.x

Mass Mutual Presents ‘Autism: Coming of Age’

March 31, 2011 4 comments

Autism doesn’t end when your child turns 22.

That is among the many messages movingly delivered in a new television documentary, “Autism: Coming of Age.” The film, produced by award-winning filmmaker Catherine Sager for Springfield, Massachusetts  public television station WGBY, and sponsored by the Massachusetts Mutual Life Insurance Company (MassMutual), highlights the lives of three families and the challenges they face finding and retaining supportive care.

  • Dan Ryan is learning how to be as independent as possible as an adult.  While he has made great progress, like      banking and going food shopping, he still believes in the power of super heroes.
  • Doug Murray works in a Boston hotel doing light maintenance and vacuuming – a passion since childhood. Most days, Doug is up at 5:30 a.m., takes two buses to work, and always arrives an hour early to say hello to all his friends. He continues to live at home, but wants a family and home of his own, his father explains in the film.
  • Tomas Espinosa, whose diagnosis places him on the autism spectrum with an intellectual disability, is also non-verbal.  He lives in his own home with 24/7 care.  He has a roommate, loves to roller skate, play baseball, and spend time with his family.

Check with your local PBS station for air dates or check out MassMutual’s Facebook page for more updates as they become available.

For further information about to assist families on the journey from adolescence to adulthood, please check out the Autism Speaks Family Services Transition Tool Kit.

Autism in the News – 03.31.11

Increasing Autism Awareness―and Compassion (Wilton Patch)
I’ll be wearing blue all day tomorrow—and I hope you will join me. Tomorrow kicks off Autism Awareness Month. The month’s events will launch over the next two days with “Light it Up Blue,” the symbolic effort to shine a light on autism. For the campaign, prominent buildings across North America and the world will turn their lights blue to raise global awareness and commemorate World Autism Awareness Day on Saturday. Read more.

Autism bill amendments receive mixed reviews (Daily Press)
Gov. Bob McDonnell has added four amendments to a bill approved by the General Assembly that would require many insurance companies to pay for a treatment for children with autism. Read more.

Learning to Embrace Autism (The Huffington Post)
As another Autism Awareness Month begins, those of us who are parents of autistic children are wondering just how much more awareness the world needs. For more than 10 years, the debates have raged onOprah and Dr. Oz, in books by Jenny McCarthy on one side and mainstream doctors on the other, in every major newspaper and magazine: What exactly is autism? Read more.

Help never came for boy struck by train (Australia)
Tiny Kieran’s night should have ended back home in the warmth of a cuddle from his mum before bed. Read more.

Hearing continued on whether to fire Conn. teacher (Brookfield, Conn.)
A hearing is being extended to a fourth day over whether a Brookfield High School math teacher should be fired for asking an overweight student if he ate his homework. Read more.

Tune in To “The Talk” Friday, April 1

March 31, 2011 3 comments

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!

 

Holly Robinson Peete and Peter Bell

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