Archive

Archive for April, 2010

Watch the “Growing Up With Autism” Webinar

April 30, 2010 4 comments

On April 27, Autism Speaks partnered with PBS’ This Emotional Life to present a webinar called “Growing Up With Autism.” The webinar featured a panel of scientists, parents, and individuals with an autism spectrum disorder (ASD) explaining what it is like “Growing Up with Autism.” Dr. Geraldine Dawson, Ph.D, the Chief Science Officer at Autism Speaks and Research Professor at UNC Chapel Hill led a discussion with Connie Kasari, Ph.D. (UCLA), Holly Robinson Peete, and John Elder Robison, addressing the challenges that face individuals with an ASD and their families as they are initially diagnosed, navigate peer interactions and age out of services as they enter adulthood.

If you missed the webinar, we encourage you to watch it online and share your thoughts.

Autism in the News – Friday, 04.30.10

Grandparents Play Vital Role for Autistic Children (HealthDay News)
Children with autism often have more than just their parents in their corner, with a new survey showing that many grandparents also play a key role in the lives of kids with the developmental disorder. Read more.

Geraldine Dawson, Ph.D. of Autism Speaks appointed to NIH Interagency Autism Coordinating Committee (Physorg.com)
Autism Speaks, the nation’s leading autism science and advocacy organization, is pleased to announce the appointment of Geraldine Dawson, Ph.D., its chief science officer, as a public member of the NIH Interagency Autism Coordinating Committee (IACC). Dr. Dawson was appointed to the IACC by Secretary of Health and Human Services, Kathleen Sebelius. The IACC was established in accordance with the Combating Autism Act of 2006 to provide advice to the Secretary of Health and Human Services regarding federal research activities related to autism spectrum disorder (ASD), to facilitate the exchange of information on and coordination of autism spectrum disorder activities among federal agencies and organizations, and to increase public understanding of the federal government’s’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services. It is chaired by Thomas Insel, M.D., director, National Institute of Mental Health. Read more.

Promise Seen in Drug for Retardation Syndrome (NYT.com)
An experimental drug succeeded in a small clinical trial in bringing about what the researchers called substantial improvements in the behaviors associated with retardation and autism in people with fragile X syndrome, the most common inherited cause of these mental disabilities. Read more.

Advocates fear unfair link of Asperger’s, aggression (Boston.com)
Robin Lurie-Meyerkopf remembers watching television coverage of the John Odgren trial that showed the teenager’s father talking about his son’s years-long fascination with violence and struggle with Asperger’s syndrome, a disorder that often left him the victim of bullying and teasing. Read more.

Teen convicted of Mass. school stabbing gets life (Woburn, Mass.)
The lawyer for a teenager convicted of first-degree murder for stabbing another student to death at their suburban Boston high school asked a judge Friday to strike down the state law that requires a life sentence without parole for his client, who was 16 at the time of the killing. Read more.

White Castle Celebrates National Hamburger Month With the Launch of a Slyder(R)-Scented Candle, Special Guest Employees and Craveable Swag for Celebrity Fans (Columbus, Ohio)
During the month of May, America’s first fast-food hamburger chain will pay homage to the hamburger with online promotions, the launch of a Slyder®-scented candle benefiting Autism, the recruitment of elected officials to work behind the grill and the delivery of “Sealed With A Crave” (S.W.A.C.) gift cases to its biggest celebrity fans. Read more.

‘Cuddle hormone’ makes men more empathetic (BBC News)
A nasal spray can make men more in tune with other people’s feelings, say a team of German and UK researchers. Read more.

In Their Own Words – Why I Run for Team Autism Speaks

April 29, 2010 5 comments

I am proud to be running the 2010 ING New York City Marathon as a part of Team Autism Speaks, and hope that my contribution to this organization can inspire others to think outside of themselves. 

I do not have a child with autism and it is impossible for me to understand what day-to-day challenges individuals with autism and their families face.  However, I know that we are all but one diagnosis away from our lives changing forever, and those families that are handed this diagnosis are suddenly faced with a challenge that might seem daunting. 

My 14-year-old daughter, Megan, has severe spastic quadriplegia cerebral palsy. My father, in an instant, four years ago, fell off a ladder and became paralyzed from the waist down. I take care of my daughter at home and then work with my father at our family-owned business. I see them both struggle with their everyday lives and know it isn’t easy.  My life changed in a moment, and theirs did as well, when their own diagnosis was handed to them. Accidents happen, ladders fall, babies are born prematurely. We are all susceptible to whatever is next, good or bad. Team Autism Speaks strives to provide a solution to this – by raising awareness, searching for a cure and closing the gap to the unknown.

Why did I choose Team Autism Speaks?  I realize that just because my daughter and father are disabled doesn’t make me any less likely to have a friend who has a child with autism, a niece or nephew who might be diagnosed, or know a person in our community living every day with it.  

I will spend this summer and fall training for the ING New York City Marathon, a dream I never thought I would achieve when I first laced up my running shoes around the time of my father’s accident. Through the years, I have felt that I run because my daughter and father cannot. Now I will run because, perhaps, I can make a difference to those families who live, struggle and thrive with an autism diagnosis; may my small 26.2 mile journey be but a large step in overcoming one more developmental disability. We do not know what is around the corner, but I would like to help lead the way.

Space is quickly filling up, so if you  would like to run with a group passionate about raising awareness then we want you to Team Up with Autism Speaks for the ING NYC Marathon 2010 please visit http://events.autismspeaks.org/nycmarathon for complete details.  

This “In Their Own Words” essay is by Timmesa Eads from Mt. Airy, N.C.

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Community partnerships for research and solutions

April 29, 2010 2 comments

This post is by Leanne Chukoskie, Ph.D. Dr. Chukoskie is the Asst. Director Science Communication and Special Projects at Autism Speaks and Asst. Project Scientist, Institute for Neural Computation, UCSD.

Having not previously interacted with the National Institutes of Environmental Health Sciences (NIEHS), I didn’t know what to expect.  I must admit a tendency to equate the National Institutes of Health with the pinnacle of ivory tower research and a somewhat “stuffy” perspective on science. I could not have been more off base in describing the inaugural meeting of the Partners in Environmental Public Health (PEPH).

The initiative aims to bring together academia and community stakeholders as partners in improving environmental health, and this was clearly a charge that the leadership and participants took seriously (read a description of the meeting).  The passion of the people participating in this meeting was palpable. Many of the community organizers and research partners in attendance have been seeking solutions for local environmental problems for years. Spontaneous applause and whoops from the audience erupted in response to community-empowering comments or discussion. This wasn’t your typical scientific conference! After each discussion session, the moderators had to actively intervene to end the questions and suggest that the conversation continue over the next break, lest we get horribly off our time schedule.

At the meeting my colleague, Alycia Halladay, and I conversed with other public health advocates about what we and other organizations are doing to disseminate research findings to members of the community. How were we learning what issues concern the community most? How do we use that information to address those concerns? How are we delivering scientific information about autism to the public and are they “getting it”? These other groups wanted to learn from us, and we from them.

We learned about an exceptional program that trained portreros (trusted communicators in the local Hispanic community) in various aspects of environmental science understanding using hands-on science demonstrations. The portreros then met with other members of their community to convey needed information about local environmental risks surrounding a superfund clean-up site. Could we develop the resources to train our team of volunteer Science Ambassadors at Autism Speaks similarly?

We also heard an important presentation from Michael Yudell, Ph.D., M.P.H. of Drexel University who spoke about communicating autism research findings to the public in a clear, direct and useful manner. Citing the history of how “blame” has been used by different ways and different groups to identify the causes of autism, Dr. Yudell offered recommendations for improving the dissemination of research  based on a meeting organized at Drexel last year

It is in meetings like this is where the rubber meets the road.  There are so many areas of opportunity for autism, which is one of NIEHS’ priority areas of investigation, including opportunities for organizations and other community advocates to partner with academia and apply for grants. Most importantly, however, this initiative enjoys ongoing support from the government.. We look forward to making the most of the opportunities offered and working with you, the autism community, to make the changes we need most.

Autism in the News – Thursday, 04.29.10

Dover NASCAR race to benefit Autism Speaks (Dover, Del.)
For the fourth straight year, Dover International Speedway’s Spring NASCAR Sprint Cup Series race will create awareness for a very worthy cause. The NASCAR Sprint Cup Series event to be held Sunday, May 16, will be called the Autism Speaks 400 presented by Hershey’s Milk & Milkshakes. Read more.

Deaths Ruled Murder-Suicide; Parents of Autistic Kids Speak Out (Gray, Maine)
The state medical examiner’s office has ruled the deaths of a Gray father and his autistic son as a case of murder-suicide, sparking anxiety and concern among other Maine parents of kids with autism and Asperger syndrome. Read more.

Autistic girl escapes abduction (Canada)
A six-year-old’s autism disorder may have been what saved her from a predator who family say tried to abduct the little girl. Read more.

Lawmakers expected to pass antibullying legislation today (Boston.com)
Lawmakers are poised to enact sweeping antibullying legislation after reaching agreement yesterday on a measure that would require school employees to report all instances of bullying and require principals to investigate them. Read more.

Sorority raises funds to benefit Autism Speaks charity (Eau Claire, Wis.)
Making an effort sometimes consists of “going to the ends of the earth.” However, a group of dedicated women will not be headed that way. Instead, they will be heading up and down … and up and down again, for an astounding twelve hours. Read more.

Greek houses team up for autism awareness (Bloomington, Ind.)
Alpha Tau Omega philanthropy chairman and junior Matt Meredith’s involvement with Autism Speaks is a personal one.  Read more.

City Pushes Shift for Special Education (NYT.com)
The Bloomberg administration, struggling to address the needs of a growing number of students with learning disabilities, is overhauling special education by asking every principal to take in more of the students and giving them greater flexibility in deciding how to teach them. Read more.

“Tip Off for a Cure”

April 29, 2010 6 comments

This guest post is by Autism Speaks Blog contributor Kerry Magro.

Dikembe Mutumbo and Kerry Magro

Hello all. My name is Kerry Magro and this is my first-ever post on the Autism Speaks Blog. I’m currently a junior at Seton Hall University, majoring in Sports Management and have been recently hired by Autism Speaks as a writer.  I first got involved with Autism Speaks through activities, like the Walks. Since then, I’ve met a lot of great people who are committed to spreading autism awareness. As someone on the autism spectrum, I have joined many others on the spectrum as an advocate myself. Spreading autism awareness has always been a key focus for me. Now that we have introductions out of the way, I hope you will enjoy my first column.

Autism and basketball have successfully been linked in the news before.  An example, three years ago, was when the entire world was introduced to a high school water-boy, turned ESPY Winner, Jason McElwain.

And on Wednesday, April 14, Autism Speaks got into the action as they hosted an event called “Tip Off for a Cure” at The Metropolitan Museum of Art’s spectacular Temple of Dendur.  The Temple, bathed in blue lights for the evening, (in keeping with the  Autism Speaks Light it Up Blue  campaign theme)  served as the background for a  fundraising dinner gala  benefiting  Autism Speaks & The Gillen Brewer School of New York City. The prior year‘s event, called “Kick Off for a Cure” was retooled with a NBA theme. This year, with major sponsorship from the National Basketball Association foundation “NBA Cares,” the event was chaired by NBA Commissioner David Stern.  Commissioner Stern spoke and brought many members of the NBA family.

This star-studded event, filled with many NBA Legends such as Dikembe Mutumbo, Earl Monroe, Bob Lanier Jr., Gail Goodrich, John Starks, Albert King, Darryl Dawkins and Butch Beard was highlighted by the presence of one of the special honorees of the night, former NY Knicks, NBA player turned US Senator from New Jersey, Bill Bradley. I was privileged to talk to several of the former NBA players about their interest, motivations and participation in the event and the cause.

 “Autism is an Issue that needs to be looked into. Every little bit counts,” former NY Nets player Cliff Robinson said, when discussing his reasons for attending “NBA Cares” events. “They asked me to come out and I couldn’t say no.”

Along with the NBA Players, many prominent business figures were in attendance. Present were Vice Chairman & Global Head of Mergers and Acquisitions at Morgan Stanley Robert A. Kindler and President, CEO and Director of Alcoa Klaus Kleinfield.

While basketball and autism were the two dominant themes of the night, hearing some of the main speakers such as Marv Albert, Suzanne and Bob Wright and especially, Taylor Crowe, made the night truly magical. Taylor Crowe, Bill Bradley’s cousin, who is on the autism spectrum, spoke about his life and his struggles growing up on the autism spectrum. Taylor, who confidently walked to the podium when he was asked to speak by David Stern, addressed the audience for 15 minutes about his life experiences. “You are only doomed if you give up”, Taylor said in relation to his struggles with autism during the years.

No one summed it up better than Autism Speaks co-founder Suzanne Wright: “Autism is on the run because Autism Speaks is after it.”, she continued “Michael Jordan once said, ‘Obstacles don’t have to stop you.’ If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it and that is exactly what we do at Autism Speaks.”

I had a lot of great discussions with the guests and wanted to post some of these people’s thoughts so you can see the importance of what Autism Speaks is doing.

The only people who are doomed are those who give up” – Taylor Crowe:  28-year-old honoree, who has autism

Autism is an issue that needs to be looked into. Every little bit counts.” – former NJ Nets player Clifford Robinson

Autism is one of those epidemics that is attacking the fabric of our society right now.” – former NY Knicks and Houston Rockets player Dikembe Mutumbo:

I have a daughter, an 11 year old with Downs Syndrome so this is something I really appreciate and can get into. I reap the benefits from functions like this and to see the kids and see how independent they are its awesome, it’s awesome! I don’t know what it is, but these kids have so much more going on that I wish we could see it the way they see it.  This is my first event and I’m enjoying it.” - former Detroit Pistons and Utah Jazz player Darryl Dawkins

A friend of mine has a son who has autism, and as far as my connection with the organization I’m here because the NBA gave me a call and its definitely an issue that really needs to be looked at. New York is a great city, and a very charitable city and what a better place to raise money and to raise awareness for autism than to have it in this beautiful museum, it makes it even better.” - former NY Knicks player John Starks.   

Everyone shared former Detroit Pistons and Milwaukee Bucks player, Bob Lanier Jr.’s enthusiasm when he spoke about how excited he was to be at the event: “Well, I traveled a long way to come here because I believe in the cause. David Stern is chairing this event and has been a difference maker all around the world.  Our great athletes are are here to support a wonderful cause and trying to raise not only  awareness about it, because it is not something a lot of us know about. It affects a lot of boys at a very young age. Trying to figure it all out  – got to raise awareness, raise funds and utilize resources and that is what the NBA does really well. I’ve been doing stuff  all around the world for NBA Cares. By raising awareness and using the resources  of NBA Cares, our  brand and our players, we can help draw attention to these needy causes.”

Felipe Lopez of the Orlando Magic commented: “You can look around and see all the top-notch people that are around.  We have to support it – it is a great cause. I am more than thrilled to be part of this event it as an ambassador for NBA cares. I was informed about a month ago about this event and was very excited to attend.  NBA tries to be in programs to help. We always  have to fight to make other peoples lives better. I think it’s a situation where we have to come together and we make it better.”

Rory Sparrow, former Lakers player said, “Autism is one of the major concerns in my country. Autism is so interesting. This interests me, what causes it and ways to prevent it.”

Former NBA all-star Dikembe Mutombo is no stranger to charitable causes.  He built the $30 million, 300-bed Biamba Maria Mutombo Hospital for children back in his home country of Congo. He said, “Autism is something that is a concern for all of us. For so long no one wanted to talk about it; now this being a big issue in our society. We, as parents, need to learn more. As a global ambassador for NBA Cares, I am speaking about concerns facing our youth. Since so many NBA players have children with autism, it is personal issue for us. We are feeling it at home, not just from the outside. But autism is treatable, especially when it is diagnosed early on.”

In response to the question, “Do you believe with the help of a group like Autism Speaks fundraising and raising awareness, can there someday be a cure for autism? He responded with a resounding, “Why not! We have to find a cure. 1 in 110 kids are affected. Maybe we can do better if we put our minds and money behind the cause, and we can do it.”

At the end of the night, as icing on the cake, it was announced that the event had raised more than a million dollars. What a great atmosphere and a great success!  One theme dominated the night – The NBA and NBA Cares truly care about the issue of autism and will be with Autism Speaks every step of the way!

Read more about “Tip Off for a Cure” and view photos and video footage here.

Butch Beard with Kerry Magro

In Their Own Words – I Am Michael

April 28, 2010 67 comments

This weekend, we received the following e-mail (and accompanying poem) from Gary Herrmann, a member of our community who is the father of a nine-year-old named Michael, who has Asperger Syndrome.

Like a lot of kids with Asperger Syndrome, my son has difficulty in social settings. He has one good friend. At the time he wrote this poem, both families had been very busy for a couple months, and he hadn’t been able to see his friend Billy very often. That, combined with some of the difficulties he had been experiencing in school lately, probably contributed to the feelings he expresses in the poem below.

The assignment was to type the poem. He was given some direction as to how each line should begin and word to use in each. 

I was overwhelmed by the poignancy expressed in his poem. As you will see, my son’s name is Michael, and he has a heart the size of our planet … Maybe my son’s poem will strike a chord with parents and families and remind them that even if they have difficulty expressing them, our children experience all of the same emotions we do.

I        am    Michael.
I     wonder    if    I   am   human?
I   hear  ringing    all  the    time.
I   see    molecules ……I   think.
I    want    more   friends .
I   am    lonely.
I   pretend      I   have    more       friends  .
I feel       left  out.
I  have   the   record   of        the             least     friends    in    the     school .
I     worry    if  I   have   no   purpose.
I say  jokes  to   be   funny.
I  hope   people   now   understand.
I   am  Michael.                      

If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Follow

Get every new post delivered to your Inbox.

Join 1,054 other followers

%d bloggers like this: