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Speaking up about Communication Shutdown

by Beth Finke

If you read Patricia Wright’s blog post last Friday, you know that today, November 1, is Communications Shutdown day:

Communication Shutdown is asking us all to get by without Facebook or Twitter for just that one day. To be part of the shutdown, you make a $5 donation to receive a Charity App (CHAPP), and the CHAPP tells your Facebook friends and Twitter followers that you are volunteering to shutdown.

Facebook and Twitter really are the 21st century communication tools of choice for many, and this one-day shutdown could give those of us who are not on the autism spectrum a glimpse into the world of autism and how challenging it can be to have limited communication skills.

Turns out that some people with autism aren’t crazy about today’s Communication Shutdown. In a blog post on No Stereotypes Here, blogger Corina Becker says:

While the attempt to understand our difficulties is admirable, I don’t think that a non-autistic person can fully understand an autistic reality, even with some intense simulations.

She goes on to suggest that people with autism use today’s shutdown as an opportunity to speak up:

I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions” … And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

As for me, I think I’ll participate in both. I’m going to avoid Facebook and Twitter today, and then spend that time I usually devote to social media listening to — and learning from — the people in my life who have autism.

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A day without Facebook and Twitter?

by Patricia Wright

Communication skills are so important for success in our society. Communication is required for work, in personal relationships and out-and-about in daily life. Recently effective communication has also included the ability to convey yourself online. And communication is one of the core challenges for individuals with autism.

Communication Shutdown is a campaign to bring the communication message home this Monday, November 1. Communication Shutdown is asking us all to get by without Facebook or Twitter for just that one day. To be part of the shutdown, you make a $5 donation to receive a Charity App (CHAPP), and the CHAPP tells your Facebook friends and Twitter followers that you are volunteering to shutdown.

Facebook and Twitter really are the 21st century communication tools of choice for many, and this one-day shutdown could give those of us who are not on the autism spectrum a glimpse into the world of autism and how challenging it can be to have limited communication skills. Communication Shutdown hopes to raise awareness of the challenges experienced by those with autism. And who knows? Maybe those addicted to Facebook might pick up the phone and call someone on November 1st. So OLD SCHOOL!

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Stopping the bullies

by Katy Beh Neas

This past Tuesday, U.S. Department of Education Secretary Arne Duncan announced new guidance to our nation’s schools to combat bullying. This guidance highlights the protections for students in federal civil rights laws, including those that protect children with autism and other disabilities.

Earlier this year, the Obama administration hosted the first ever National Bullying Summit and launched both the Stop Bullying Now campaign and a national database of effective anti-bullying programs. If your child is being bullied, take this information to his or her school and ask them to implement an anti-bullying program.

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Feeling hip and cool with autism

by Beth Finke

Last year I wrote about an iPhone application people with autism and other disabilities were using to communicate. Proloquo2Go was an application you could download from Apple’s iTunes onto an iPhone or iPod Touch. The total cost for that app was $149.99.

How much things can change in a year! A recent TV news story touted how easily the iPhone can be used as a communication device for people with autism and other disabilities. While the story didn’t release names of any specific apps, it did mention that the most basic version of this sort of software costs only $8.

The app is designed to let them tell others what they’re thinking … they touch the picture of what they want on the screen and the app says it out loud … things like “I want to watch TV,” “Hello. My name is Kristen,” or “I’m hungry.”

The jury is still out on how well developers will support these apps in the future. For now, though, I have to think that a kid with autism who finds it difficult to fit in with peers might appreciate how hip and cool it looks to use an iPhone to talk to friends!

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An “adults with autism” success story on Chicago’s ABC 7 News

by Beth Finke

Karen Meyer image courtesy of ABC 7 NewsOnce a semester, a Disability Culture class from DePaul University takes a field trip to my apartment. The idea is for students to get a glimpse, so to speak, of what it’s like to be blind and live in a big city.

The class is taught by Karen Meyer. In addition to teaching at DePaul, Karen is a reporter for Chicago’s ABC 7 (WLS-TV) News. Oh, and did I mention? She happens to be deaf.

Karen can read lips, and I’ve learned to use a lot of gestures and always face her when we talk. Her class came over just this past Tuesday, and this time when I talked with the students I didn’t just talk about blindness. I talked about autism too.

Turns out that in her job as a reporter, Karen Meyer had mentioned Easter Seals Metropolitan Chicago in a story she did on ABC 7 News. Remember the post we published here about Harry’s Buttons? Well, Karen’s TV feature was about the company too. Button Company Employs Adults with Autism covered Easter Seals’ partnership with Harry’s Buttons, where clients produce and sell custom-made buttons, magnets and key chains. Employees with autism are involved in all levels of the business, and meaningful, individualized positions are created to use the talents and skills of these individuals. Learn more by visiting HarrysButtons.com.

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Thanks, CVS!

by Scott Fogo

CVS Caremark All Kids Can logoThe CVS Caremark Charitable Trust recently announced a $330,000 grant to Easter Seals to advance evidence-based autism services for young children nationwide.

We at Easter Seals Crossroads are one of the 15 Easter Seals affiliates that will benefit from the grant, made possible through the CVS Caremark All Kids Can™ Program. The grant will be used to advance professional training of our Easter Seals’ therapists and assure heightened availability of evidence-based interventions for the young children we serve here at Crossroads who have autism.

To date, CVS Caremark’s commitment to Easter Seals exceeds $8 million through their CVS All Kids Can™ Program. Thank you, CVS!

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Signed, sealed, delivered: two new disability laws!

by Katy Beh Neas

Early last week the President signed Rosa’s Law. This law, named after a little girl in Maryland who has down syndrome, replaces the term “mental retardation” with the term “intellectual disabilities” in all federal health, labor and education laws.

Rosa was at a ceremony I attended on Friday with her family. Her brother was reported saying that this law is so important because what we call each other reflects how we treat each other. Wisdom from a middle school boy. Since many people with autism also have intellectual disabilities, I am hopeful that this law will influence how society welcomes all people with autism.

And then last Friday President Obama signed into law the 21st Century Communications and Video Accessibility Act of 2010. This law will require cell phones and smart phones to better meet the needs of individuals with visual impairments. It will also require television sets to be equipped with built-in technology that allows them to receive video descriptions (just like they currently are able to receive closed captions) without separate decoders.

I helped to get this bill through Congress and it was a thrill to be at the White House and see the president implement change with the stroke of a pen. Senator Mark Pryor (D-Ark) and Representative Ed Markey (D-Mass) were the primary sponsors of this new law.

And if being at the White House wasn’t cool enough, Stevie Wonder was there too. Yes, that Stevie Wonder. The My Cherie Amore Stevie Wonder.

I know an election is approaching … and I know many of us are frustrated by the current climate in Washington. But things were different last week. The good guys scored big time, twice! Its time to celebrate!

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Good news for ice cream lovers

by Beth Finke

Derek enjoying an activity at campIt’s my pleasure to introduce Pamela Langone as a guest blogger today. Pam is the Director of Communications at Easter Seals New Hampshire, and reading her post about Derek makes me want to go out and eat some ice cream — at Friendly’s, of course!

Camp Friendly’s lets kids be kids

by Pamela Langone

Derek is just one of many kids who benefits from the incredible Camp Friendly’s experience at Easter Seals New Hampshire. Derek is 15 years old and has autism. Camp has given Derek the invaluable opportunity to just be a kid.

While at camp, Derek has been able to enjoy all kinds of camp experiences: swimming, dancing, group activities and LOTS more. Most importantly, Derek has made friends at camp. He smiles, and his self-confidence has grown.

All this month, you and your family can help families like Derek’s. From now until October 31, the Friendly Ice Cream Corporation will support Easter Seals Camp Friendly’s through its Halloween Cones for Kids Campaign. Participating Friendly’s restaurants will offer Halloween Certificates good for free kid’s cones as a thank you gift to restaurant guests who make a $1 donation to Easter Seals. Donations will support Easter Seals Camp Friendly’s programs like the one Derek attends in New Hampshire.

Thank you for your support!

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Siblings of children with autism more likely to have mild traits of ASD

by Beth Finke

Our friends at the Autism Society of America have posted an article on their web site about a recent study led by researchers at Washington University School of Medicine in St. Louis. The study found mild traits (not strong enough to get an ASD diagnosis) present in the siblings of children with autism at significantly higher rates than seen in the general population. From the ASA article:

“Mild symptoms, called quantitative traits, may be confounding studies that compare children with autism to their siblings,” says first author John N. Constantino, M.D. “Researchers presume one child is affected, and the other is not, but our findings suggest that although one child may have autism while the other does not, it’s very possible both children are affected to some degree by genes that contribute to autism.”

The study It also found that while many female siblings had subtle traits, few were diagnosed with ASD.

Boys are thought to be affected four times more often than girls. But when the researchers used standardized methods to account for the presence of quantitative traits, the rate looked more like three affected boys for every two affected girls.

“The gender difference may not be as pronounced as we once thought it was,” Constantino says. “If we rely only on a professional diagnosis of autism to determine who is affected, then boys vastly outnumber girls. But it may be that many girls are being missed.”

More information on the study is available now from a Washington University press release, and the findings will be published in the November issue of the American Journal of Psychiatry.

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You are not alone — tips for dealing with stress

by Beth Finke

I am pleased to introduce our guest blogger, Laura Shumaker. Laura had a piece published in the New York Times in August about her 24-year-old son Matthew, who has autism. You might also remember the post Laura wrote for us last March — it was about providing evidence-based treatment for individuals with autism through the lifespan. We are delighted to welcome her back to the Easter Seals and autism blog — it is our privilege to publish yet another one of her very thoughtful guest posts here.

You are not alone – tips to help with stress
by Laura Shumaker

In the past several months, there have been numerous stories of mothers abusing, even killing children who have autism. “But she was such a good mother,” is often the response of family, friends and neighbors. “She had the patience of a saint. She was great with her child. She must have just snapped.”

Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome (Holroyd & McArthur, 1976; Donovan, 1988). There is no doubt that the relentlessness of raising a child with autism (managing peculiar and sometimes aggressive behavior, adjusting to strange sleep patterns, paying for therapy, worrying about the future — just writing this is making me anxious!) can push even the strongest parent dangerously close to the edge.

So here is what I, the well seasoned mother of a 24-year-old son with autism propose you do to make your life less edgy:

  • Get a break. How many of you have a regularly scheduled time that is just for you during the week that you can do something that you really enjoy? Ask your local Department of Developmental Services if your family qualifies for respite services. Matthew has been attending
    Easter Seals Programs and camps since he was very young, giving our family time to decompress and recharge.
  • Exercise. I know, hard to find the time, but find the time (I used to get up REALLY early when my kids were little and go running or walking, sometimes with a baby on my back). You’ll feel better, stronger and more resilient.
  • Connect with others in your situation that get it. Vent, laugh, cry. (Sounds like a sequel to Eat Pray Love. “There is nothing better than the encouragement of a good friend.” — Katharine Butler Hathaway
  • Educate yourself. Unlike some areas of physical medicine where the problem may have a clear cut course of treatment, we’re dealing with something that doesn’t have a clear cut solution. There is a lot of exciting new research in the field of autism. It’s essential that we take the time to keep up to speed. My local Easter Seals affiliate has a terrific parent’s education program, and I’m sure yours does too.
  • Get help. When Matthew was about 10, I was getting sick all of the time (like sick in the hospital for two weeks with pneumonia sick). My doctor thought that it was because of stress, and that a therapist might help. I still remember rolling my eyes and saying “How can a therapist help me? I just have to learn to deal with it.” In the end, I did go to the therapist, she helped me “deal with it” and I’m certain she also saved my life. Some are not comfortable with the idea of one-on-one therapy. I understand. But trust me, you’ll feel more comfortable if you try it. Group therapy is also an option.
  • Last but certainly not least, turn to Easter Seals for answers to your questions. Did you know that Easter Seals is the leading non-profit provider of services for individuals with autism? Check your local Easter Seals affiliate for information, help and resources.

You are NOT alone.

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