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Archive for April, 2011

What’s All the “Brewer-Ha-Ha” about Arizona?

April 28, 2011 17 comments

It’s on the other side of a country three time zones away from you.  You have never been there. You don’t know anyone who lives there.  You have enough on your plate with your own family and your child’s needs.

Why should you care about what is happening in the state of Arizona?

Arizona became the fourth state to enact autism insurance reform legislation in the spring of 2008. In 2011, their legislature became the first state to pass a bill that would effectively reverse the progress made three years ago. That legislation now sits on Governor Brewer’s desk awaiting its fate – to become law or to get her veto stamp.

On its face, this new legislation appears harmless and expansive of our free enterprise, capitalist society.  Let the interstate commerce trading of insurance policies begin under the premise of increased competition in the market to allow for reduced health care costs!  But at what price?  If SB 1593 is signed into law by Governor Jan Brewer, it will allow companies to shop outside the great state of Arizona – perhaps in states where autism insurance reform has not passed – potentially leaving families alone holding the bag once again for their exorbitant children’s health care costs which can quickly and easily be upwards of $75,000 each year.

Just watch the evening news any given week and you can see that Arizona politics these days are writhe with state’s rights and state pride.  “Don’t tell us what to do. We are Arizona.”  That said, how is it possible that Arizona legislators would then choose to hand over regulatory authority of healthcare coverage for their constituency to say…Rhode Island?  If SB 1593 is signed into law, policies will be purchased across state lines, or even across the country. Citizens will have no recourse – subject to the whims of the other state’s legislature, regulation committees and judicial system.  They will have no representation at all.

Last week, Autism Speaks launched an aggressive campaign asking Governor Brewer to veto the bill.  Members of our Government Relations team met with her office.  We purchased television air time for commercials. We sent eblasts to rally the Arizona community.

This week we are asking people all across America to pitch in with the heavy lifting.  We need it. 

There is a company generating robocalls to call for Governor Brewer’s signature into law.  And their ever efficient robodialer is delivering calls to Governor Brewer’s office at a higher rate than our community – a community exhausted from fighting our fight at every turn.

Help us prove that our grassroots advocates are better than robots.

This is simply a domino that we cannot afford to let fall.  A victory for the opposition would bolster  resolve to introduce similar legislation in every state where reform initiatives have passed.

Who cares about Arizona politics? You should. Your insurance coverage, or your hope of obtaining it, is now in great jeopardy. As a community we must stand strong. We must come to Arizona’s aid.  We must politely ask Governor Brewer to do the right thing – to veto SB 1593 and preserve the accomplishments of Steven’s Law.

Regardless of what state you live in, please call Governor Brewer’s office at 602.542.4331. Press #4 for a live person. Say “I am calling to ask Governor Brewer to veto SB 1593.” Tell your friends. Post it on your Facebook. Send it out through Twitter.  Ask for accountability from your friends and family. Ask them to demonstrate publically that they have completed the mission by writing “DONE” below your post.

Nothing in life is ever easy. To preserve progress, we must be ever vigilant.

To learn more about what is happening in Arizona or to learn how you can become more involved in federal and state initiatives, please visit www.autismvotes.org and sign up today!

JobTIPS: Helping to Level the Playing Field for Individuals with Autism in the Workforce

April 28, 2011 4 comments

This is a blog post by Louise Buchholz Southern, M.Ed., BCBA., formal special educator and content director at do2learn.com.

Many people with autism spectrum disorders are fully capable of joining the workforce, living full and independent lives and being tax-contributing members of our communities. Yet the number employed is relatively low due to lack of access to information and supports that would result in gainful employment. JobTIPS is our attempt to help level the playing field.

As a former special educator at the secondary level, I spent so much time focusing on my students’ academic and social skills development that I had little time to track down or develop resources that supported their vocational needs. I was not alone.

A group of us – educators, clinicians, parents and advocates – banded together to see what resources were actually out there.  Unfortunately, what we found was very limited and not tailored to the special needs of individuals with autism. Many people reside in remote and underserved areas, where there is even less access to supports, combined with the fact that not all available resources and instructional strategies are of a high quality or consistency.

Many of these students are not going on to pursue post-secondary education options, but often graduate without the basic skills needed to find and maintain employment.

Understanding the “why”

A prospective job applicant like “James” is ill-equipped to follow his dream in the workplace. Getting along with co-workers is really hard for him. He gets tired of “adjusting to them” and often asks “why can’t they adjust to me?” James, like many young adults with autism we see every day, has trouble keeping jobs. Over the last 10 years he has been hired and fired repeatedly, seldom understanding why. For others, the challenge is simply getting hired.

Tough questions. Tough questions that we felt could be addressed by merging technology with our expertise in the field of autism. We broke down this web-based resource into four core parts – Determining Interests, Finding a Job, Getting a Job, and Keeping a Job.

We designed real-life, interactive exercises that not only deal with the practical skills of identifying jobs that match their strengths and filling out applications, but developing their understanding of, and response to, the important social nuances that underlie the workplace environment. To teach them the “whys” of social interactions that typically get in the way of their success.

Successful employment is a key to greater independence

Successful employment is a key to greater independence – healthier self-esteem and higher quality of life – for individuals with ASD.  JobTIPS aims to offer these young adults the right resources to help them optimize their potential and at a level where employers see and appreciate the unique skills and talents they have to offer. To find out more, visit www.do2Learn.com.

Autism Speaks has many employment-related resources for individuals with autism and their families. These include: Autism in the Workplace, Advancing Futures for Adults with Autism, and the Transition Tool Kit.

Autism in the News – 04.28.11

April 28, 2011 2 comments

Checklist could spot children with autism earlier (Washington Post)
Pediatricians could diagnose children with autism earlier by asking parents to fill out a simple, five-minute checklist when they take their babies in for their first-year checkups, according to research released Thursday. Read more.

Students honor autism with bubbles (Tototwa, N.J.)
Part of Autism Awareness Month, the students at Memorial School and Washington Park School in Totowa participated in a national event recently. The students at both schools were blowing bubbles for a FACES (Families for Autistic Children Education & Support) event to bring awareness to autism and hopes for a world record. The students are trying to set a new Guinness World Record for the amount of people blowing bubbles simultaneously. Read more.

Parents accused of caging autistic children in Vancouver plead not guilty (Vancouver, Wash.)
The Vancouver man and woman accused of keeping two autistic boys locked behind what police called a “cage-like” door pleaded not guilty to unlawful imprisonment charges in Clark County Superior Court on  this morning. Read more.

Glen Ridge schools mark Autism Awareness Month (Glen Ridge, N.J.)
“My name is Sue Rubin. I am 26 years old. I have written these thoughts about my life, because I don’t really talk.” Read more.

Autism needs acceptance, not an awareness month (Sun Sentinel)
As we near the end of April, celebrated by some as Autism Awareness Month, I offer you this potentially controversial piece by the father of an autistic child who doesn’t believe in raising awareness of autism, as much as accepting those who are living with the condition. Give it a read, and leave your impressions in the comment section below. I’d be interested to see what you have to say.  Read more.

A Sister Reflects on World Autism Awareness Month

April 28, 2011 26 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

April 2011, World Autism Awareness Month, has been one of the most memorable times in my life. The last few weeks I have taken part in some unbelievable ‘Light It Up Blue‘ events, met amazing people, and connected with the worldwide community to commemorate World Autism Awareness Month. April was comprised of so many moving parts that came together seamlessly, due to the hard work of so many.

I have been meaning to write a blog post, but I keep hitting walls.

Sure, I drafted a post of my experiences on April 1 and 2, detailing some of my stops: The Today Show with Alpha Xi Delta; WPIX 11 with the incredible students from Pelham; The New York Stock Exchange with our Co-Founders Mr. and Mrs. Wright, state dignitaries, politicians, celebrities and many more prominent people in the autism community. I could write about the reception hosted by ‘Light It Up Blue Rockland,’ in my hometown, when my brother and his housemates were in attendance. I was so proud. Or, the press conference at the Intrepid, which took place on a beautiful Saturday morning.

Throughout this campaign, I communicated with literally thousands of people all over the world. I feel blessed and privileged to have heard their stories and seen their photos. While I worry that I will never be able to formulate the right words to give World Autism Awareness Month justice it deserves, here are some photos that will speak for me:

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I can’t forget to include the panel discussion, ‘Solving the Autism Public Health Puzzle: Regional and International Collaboration,’ held at the United Nations, or ‘A Blue Affair’ hosted by Donald Trump Jr. and his wife, Vanessa.

We should also revisit the push to ‘Light The White House Blue.’ I am in awe of each person who submitted a blog entry. More than 1,000 comments were posted and much of the autism community was unified for a common goal.

On April 25, my dear friend Jess, who so bravely and unselfishly shares her beautiful family with us on A Diary of a Mom, was invited to The White House for an event to commemorate Autism Awareness Month. The morning before she headed over to 1600 Pennsylvania Avenue, Jess told me that she would be taking my brother Jeff with her. My heart was full. I couldn’t think of anyone better to represent him. She gives all of those affected by autism the utmost respect and genuine compassion. I will never be able to thank her enough.

However, alongside all of these spectacular and unique moments, the most memorable for me happened on probably the most mundane of all days.

On April 3, once we all were coming down off the Light It Up Blue ‘high,’ my brother came home from his residential house, and I snapped back to reality. We took a walk, as we have done countless times before. My mom, brother, and I have been taking Sunday walks for years, making it almost an institution. We go to different locations, but often find ourselves on the wooded path at the Pearl River Middle School, as we did that day. We are shielded by the trees and find comfort in the trail’s predictable twists and turns.

Before we begin, Jeff’s anxiety kicks in and he asks for a rundown of dates, “Yes, Jeff, next weekend you can order two DVDs off Amazon, in June 2011 we will go to Montauk for a week, in 2014 we will remodel the kitchen …” and so it goes. Then, we are swallowed by the woods, where Jeffery will usually stroll a few steps behind making his noises. My mom and I will smile and greet friendly strangers; some give us knowing and warm looks, while others sort of stare.

As we round the first bend, which borders a putting green at the local golf course, we remind Jeff to quiet down. As per usual, he gets louder, and we laugh. Next, there is a downturn that Jeff always heads down gingerly. He approaches this dip with the caution he exhibits in some everyday activities. If there are any disruptions along the way (fallen tree, broken bridge, mud puddles, etc.), Jeff always takes note – I am positive he remembers every element of the trail from the first day he stepped foot there, over twenty years ago.

We plod along, stopping from time to time to chat about dates. He’ll hold our hands, then jog ahead, or maybe he’ll stop to give us a hug. My mom and I don’t mind – as a matter of fact, we’d have it no other way.

The last leg has a steep uphill that my mom and I sort of dread. Each time, Jeff manages to surge, making it to the top with a smile. He takes on the hill with gusto and courage. This trail reminds me of the journey my family is on. There are times we are slow and anxious, while other times we coast through and laugh. We have down-slopes and upturns, but Jeff always keeps our pace and establishes a rhythm. It may have taken him a little longer through the years, but he has become our fearless leader. Jeff holds us up with his unconditional love and directs us with his strength.

My brother, like the countless members of our community, is brave.

World Autism Awareness Month 2011 has given me a greater sense of community. Together, we will make the world a safer and more welcoming place for my brother, and all of those with autism spectrum disorders. I have a renewed hope, and will be forever changed.

I would like to send a big thank you to each and every person in the autism community.

Me and Jeff on the trail - photo by Carol Dyer





Autism in the News – 04.27.11

April 27, 2011 3 comments

Autism Walk In Los Angeles Raises $1.4 Million For Autism Speaks (Los Angeles, Calif.)
More than 25,000 Angelenos gathered at the Rose Bowl stadium in Pasadena on Saturday to participate in the annual Walk Now For Autism Speaks event. The family-friendly walkathon takes place in 90 cities across the country to raise awareness for the syndrome and funds for more research. Before the walk had even started, event organizers were reporting that donations already exceeded last year’s Los Angeles contribution at $1.3 million, according to ABC7. By the end of the walk, the figure was over $1.4 million and counting. Read more.

Autism needs growing (Lakewood, Calif.)
Thirteen- year-old Blake Wesselman is a math whiz in his seventh- grade class, but one wrong answer can send him into a meltdown. Read more.

Try to be model for hiring autistic workers (Pantagraph.com)
The April 3 Parade magazine had a story, “Autism’s Lost Generation.” It detailed the frustration and challenges of autistic young adults. A Pantagraph story April 18 told of a local young man with autism and his successes at Heartland Community College. Society needs to ask, what happens when the school bus does not come for people with cognitive disabilities? Read more.

Autistic students teach classmates about their condition (Valley News Dispatch)
Like an ace pitcher, Jon Krzewinski didn’t let his nerves affect his performanceOn Tuesday, he helped explain a little about autism to his fellow fifth-graders at Colfax Upper Elementary School. To convey his message, he shared some details about himself, among them that he’s a baseball fanatic. Read more.

Prince George’s County Council Recognizes Autism Awareness Month

April 27, 2011 5 comments

On April 19, 2011, Council Chair Ingrid M. Turner, Esq. presented a proclamation in honor of Autism Awareness Month. Here are the opening remarks by Stacy Wiseman, Pink DREAMS TEAM Leader, to commemorate Prince George’s County Council’s recognition of Autism Awareness Month.  

Stacy Wiseman


“RAISE your hand if you know someone affected by Autism or have a family member on the spectrum.

Keep your hand up if you know what Autism is?

What is Autism?
Autism is a term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders (PDD).  Some of you may have heard the terms Asperger’s Syndrome, Rett Syndrome and Childhood Disintegrative Disorder. Many parents and professionals refer to this group as Autism Spectrum Disorders or (ASD).

How common is Autism?
Today, it is estimated that one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined. An estimated 1.5 million individuals in the U.S. and tens of millions worldwide are affected by autism. Statistics suggest the rate of autism is increasing 10-17 percent annually. Studies suggest boys are more likely than girls to develop autism and receive the diagnosis 3 to 4 times more frequently. In the United States alone, one out of 70 boys is diagnosed with autism.

What causes Autism?
The simple answer is we don’t know…I want to thank  the Prince George’s County Council for recognizing  Autism Awareness Month today and say that there are many families, friends, neighbors and strangers who are affected by Autism each day.  While no child or adult with an Autism Spectrum Disorder is alike, we all have a civic duty as a community to be AWARE of this disorder and take ACTION by visiting www.autismspeaks.org  to donate toward current research in finding a cure, participate in a Walk or Run and find out more. Thank you!”

Prince George's County County Council Member Karen Toles, Council Chair Ingrid M. Turner, Stacy Wiseman and son, Council Member Leslie E. Johnson, Dr. Kara Libby and son

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

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