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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

Ido Kedar Speech at Los Angeles Walk Now for Autism Speaks

April 26, 2011 20 comments

Ido Kedar is a fourteen year old 8th grader in all general education at his local middle school, which he attends with the with the support of an aide. Ido is also non-verbal and communicates via letterboard (unassisted) or dynawrite. He was not able to demonstrate that he understood language fluently until he was age seven. It took several years after that to convince the school district to remove him from his remedial autism class and since, he has taken off running.

“I am here to represent the point of view of people with autism who don’t speak. Some of you might be parents of non-verbal people like me and stopped believing it was possible that your child could ever learn communication or even to understand.

I don’t doubt that experts probably told you that it was false hope to imagine that your child could talk. Well, I don’t talk but I still go to regular middle school in regular classes and do regular schoolwork, and I get good grades. I tell you this, not to brag, but to give you hope.

I don’t need to talk with my mouth. It’s too hard. But I’m able to communicate thanks to my letter board and dynawrite. It was a long journey to get to here from where I started. I had years of silence and rotten frustration. I was totally not able to show people I understood, so I suffered inside while my specialists chose wrong for me.

It was the worst, and I know it’s equally challenging for parents too.

I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty, and the pursuit of happiness.

But here’s my hope. I went from so bored in school in remedial education when I couldn’t communicate to a diploma path in high school next year. How, is the story of the potential in your kids.

Teach them interesting things. Read them age appropriate books. Talk normally to them. Not, “go car,” “say hi,” “good job.” I believe many autistic people are understanding inside and can’t show it. To be talked to like a baby is so frustrating.

The letter board was my freedom. This is it.

It takes a while to learn how to use it, but it’s worth it.

Communication is the most important thing.

I used to dream of talking, of course. But I am not free because I talk. I don’t talk. I am free because I can express my ideas in pointing to letters, in typing, in my blog and in my speeches. I am not lonely now.

Autism is a deep pit. Don’t give up.”

Autism in the News – 04.26.11

Are You an Autism Mom? Submit a Guest Blog for Mother’s Day! (About.com)
As Autism Awareness Month draws to a close, my thoughts are fast turning to NEXT month – and Mother’s Day. This year, I’m inviting autism moms to submit a guest blog to be published on this site during the month of May.  Here are the details. Read more.

Advocates push for autism attention (Montgomery Advertiser)
With an average of one in 110 children now diagnosed with an autism spectrum disorder (ASD), the need for more research and continued funding for services is greater than ever, a group of autism advocates said at a recent rally at the State House. Read more.

‘Fly Away’ DVD includes autism documentary (South Bend Tribune)
Jeanne, a mother played by Beth Broderick, tries to balance her busy life while caring for her severely autistic 15-year-old daughter, Mandy. The movie unfolds like “Groundhog Day,” except the daily routine is far more exhausting. Because she’s up every night singing her daughter back to sleep, Jeanne routinely sleeps through her alarm clock, which means Mandy (Ashley Rickards) misses her bus. Read more.

Surfers for Autism event draws 200 kids to Juno Beach (Juno Beach, Fla.)
More than 200 kids on the autism spectrum took part in a Surfers for Autism program April 23 at Ocean Cay Park in Juno Beach. Read more.

iPads, iPods aid communication in Elgin special-needs classes (Larue, Ohio)
Apple iPads and iPods are doing the talking in Elgin West Elementary School multi-handicapped classrooms. Read more.

 

Celebrating Moms!

April 25, 2011 61 comments

Welcome to this installment of ‘Topic of the Week.’ These topics stem from submissions from our community. If there is anything in particular that you would like to see featured, please contact us!

We would like to celebrate mothers this week!

What positive message do you want to send to other Moms who have a child with autism? If you could offer encouragement to other Moms what would you say? What new strength or wisdom did you gain from raising a child with autism?

Be sure to subscribe to the next Community Connections that will, “Celebrate Moms,” to be published on May 6.

Camp Summit

April 25, 2011 3 comments

This is a blog post by Liz Applegate, the Program Marketing and Social Media Manager at Camp Summit.

Ah, summer camp.

If you were a summer camper you can probably remember it like it was yesterday: Fun activities like horseback riding or arts and craft; roasting marshmallows around a campfire; and even staying up late, giggle under the covers with your cabin-mates.

Or maybe, like me, hearing camp stories from childhood friends would have you green with envy and dreaming of the day when you could share the experience with your own children.

But what about a child with Autism? What about your child with Autism? Could these dreams hold true for them as well?

These are questions the staff at Camp Summit is asked by many possible first-time camp families and the response is always a resounding “Yes!”

Camp Summit is unique in its ability to care for campers with no upper age limit. Because of this, success can be built and measured continuously from age six through adulthood. Not only is success seen through continued yearly attendance but also watching campers grow and mature through the years.

From mild to severe, campers with Autism are nurtured to take part in activities with their group and many participate in the much coveted dance at week’s end.  This takes place in an individual’s timeframe-maybe over a few days or maybe over a several years.

Besides a much needed respite for family and caregivers, the benefits of attending camp reaching into the daily lives of our campers and families is often seen. A family recently expressed great joy in sharing news of a successful family vacation with their child with Autism. Through the experience at Camp Summit, the camper was able to fully participate in the activities of the vacation creating memories for all.

But as a caregiver how can you help ensure a successful camp experience for your camper?

Just as your summer camp experience (or that of your friends’) was unique for your needs and interests, so must a camp for a camper with Autism be unique. Camps, even those for campers with disabilities, are not “one size fits all” and it’s important to find the right one for your camper.

Some important questions to consider:

  1. What is the camper to counselor ratio?
  2. How does the camp staff handle transitional times (moving from activity to activity)?
  3. How are food allergies and sensitivities handled?
  4. What if your camper doesn’t want to participate in a given activity?

The benefits of camp are often immeasurable. From needed rest for the family or experiences outside the normal realm of activity, often small accomplishments can be measured in treasured memories by the camper and their families. And through the ongoing efforts of a trained camp staff and continued participation, your camper can enjoy fun experiences from your own summer camp memories…and maybe even leave you green with envy for a roasted marshmallow or two.

For more information on camping programs, including our new fall camping schedule, at Camp Summit, visit our website at www.campsummittx.org.

Autism in the News – 04.25.11

Half of autistic children prone to wandering, study finds (Columbus, Ind.)
Half of children with autism are prone to wandering, sometimes for hours — a dangerous behavior pattern that can start before kindergarten, a national survey has quantified for the first time. Read more.

Wiger: Task Force Would Help Minnesota’s High Numbers of People with Autism (Oakdale Patch)
A recent report on autism prevalence among 8-year-olds in public schools shows that Minnesota has the highest rate of autism in the United States.  The average rate in our country is one in every 126 8-year-olds, but in Minnesota, the rate increases to one in every 65. Considering these numbers, it is our duty to do what we can to understand autism and offer help to individuals with autism and their families. Read more.

Sen. Michael Nozzolio visits student, honors Autism Awareness Month (Senaca Falls, N.Y.)
In recognition of the hundreds of individuals who have diagnosed with autism, as well as their families and the dedicated professionals who work with them, State Senator Mike Nozzolio is helping to recognize April as Autism Awareness Month. Today, Senator Nozzolio commemorated this special month by visiting 5-year-old Jack Davis, a child whose life has been positively impacted by improved care and early treatment of autism. Read more.

Aging Out and Autistic: A Growing Problem in Illinois (Springfield, Ill.)
Just about everyone knows someone with autism theautismprogram.org these days. That may be because, according to the Centers for Disease Control, more than one million Americans have some sort of autism spectrum disorder; most of them are children. Read more.

Women’s Hockey Recognized by Autism Speaks and NHL (Hamilton, N.Y.)
Head Coach Scott Wiley and the Colgate women’s hockey team were recently recognized at the “Face-Off for a Cure: An Evening to Benefit Autism Speaks and The Gillen Brewer School” – an event in partnership with the National Hockey League. Read more.

Categories: Autism in the News

The Mean Things People Say

April 25, 2011 60 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started the club Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events, while supporting their local autism communities.

In the past, I’ve blogged about my own experiences and then tips to overall help individuals on the spectrum. For this post, however, I am looking for your thoughts and tips on a subject that I’m not sure there is a clear cut answer to.

Here’s the scenario: quite recently, I was with a group of friends hanging out when a mutual friend who was under the influence of alcohol started to become belligerent. He was clearly upset about something and decided to storm off. After several of our friends were trying to calm him down and make him come back to the group he called me out for being autistic in a negative connotation; like being autistic is a bad thing. He said, “Shut up Kerry, You’re autistic!” For some reason this remark just bounced off me, but after that experience I haven’t forgiven this individual or shared the story of what happened with anyone else.

It’s difficult sometimes to understand why people can be so mean. A few weeks before that situation, I was on my way to an event with a peer when I called, “shotgun” so I could sit in the front side passenger seat. My peer replied, “Sure, Kerry has that DSS hook-up right there.” In context DSS means Disability Support Services at the college I attend and this was in reference to getting accommodations for being registered as a DSS student. So I guess the question I have for those reading is…

“When did you first feel comfortable addressing comments either positive or negative people make about you or a loved one on the spectrum?”

I know this may seem like a very broad question but in my experience as an individual on the spectrum I’ve always had a tough time communicating the issue to others, especially when I was younger. Now at the age of 23 I have spoken at several events about the issue and can go up to anyone and speak my piece in a non-threatening way to make those aware of what’s right from wrong. The first time I can remember ever speaking up for myself was when I was 13. One of my classmates and I were having a conversation about disabilities and I mentioned that I was autistic. Almost instantly he said, “No you’re not, you can talk!”  I came back and said, “It’s different for different individuals” and then went for the rest of the class period almost discussing things such as high functioning/low functioning autism, the signs, the causes, etc.

At the end of the day, I know that I’ll fight in most scenarios to make individuals aware not only for myself but so other individuals don’t have to deal with similar cases. As a community here at Autism Speaks, I would love to hear your thoughts on the subject. Please leave your comments below. Thank you.

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