The Autism Chronicles

The Autism Chronicles is a series of heart-felt radio stories from families. Hearing their voices and their stories reminds me of the power of family and community. The Autism Chronicles is hosted by my local National Public Radio station, WBEZ. I particularly appreciated the episode that followed Amy Thompson to her first autism support group meeting. Hearing families offer their support to Amy as she tries to navigate the maze of autism treatment was inspiring. The challenges of autism come through on each of the episodes, along with the joy that each family has for their child’s presence in their family. The stories are fairly short (about 10 minutes each). Take the opportunity to listen if you get the chance.

 

Understanding Autism for Dummies

I take off tomorrow for the American Library Association annual conference in Anaheim. I’m pretty excited about the trip, and have been checking out the online schedule ahead of time to figure out which author sessions to go to and which exhibit booths to check out.

One booth on the list that caught my eye (okay, my ear) is Wiley – they published Understanding Autism for Dummies, written by Stephen Shore, Linda G. Rastelli and Temple Grandin.

Featuring inspiring autism success stories as well as a list of organizations where people who support those with autism can go for additional help, it offers practical advice on how to educate children as well as insights on helping people with autism use their strengths to maximize their potential in life.

Stephen Shore, EdD, serves on the board for several autism spectrum-related organizations and he has written Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and edited Ask and Tell: Self Advocacy and Disclosure For People on the Autism Spectrum. Linda G. Rastelli is a veteran journalist who specializes in health and business. Temple Grandin, PhD, is the author of the bestselling Thinking in Pictures and Emergence: Labeled Autistic.

Stephen Shore and Easter Seals President and CEO Jim Williams at the 2007 Easter Seals Training Conference.We at Easter Seals have a special connection to Dr. Stephen Shore. Shore is executive director of Autism Spectrum Disorder Consulting and serves on the board of the Autism Society of America (ASA). His books about autism are available at the Easter Seals and Autism bookstore, and you can read a review of his book, Beyond the Wall, on our blog.

Stephen Shore gave the keynote address at the Easter Seals 2007 Easter Seals Training Conference — he is a well-known public speaker, and at the conference he provided a personal perspective on the experience of living with autism. I was among the 400+ people in attendance for that speech, which was the highlight of the conference.

I’ve learned a lot about autism from Dr. Shore and my colleagues here at Easter Seals, but I know there’s always more to learn. I’ll check out Understanding Autism for Dummies at the Wiley booth and let you know what I find out!

 

Try a symbol-based web browser for free

A comment to my blog about web accessibility for people with autism and other disabilities offered a 30-day trial of Webwide. I wanted to let you know about this offer, in case you missed the comment.

If any readers are interested, you can try Webwide for free for 30 days by sending an email to trialwebwide@widgit.com.

Please include your name, address, phone number, email address, and organization.

I have tried Webwide myself and know individuals with autism who are able to interpret and understand information more successfully using the symbol supports and added visual cues Webwide provides. It’s a fantastic tool — check it out!

 

Autism and happiness :)

For those of you new to our blog, let me re-introduce myself. My name is Beth Finke, and I am the Interactive Community Coordinator at Easter Seals. Simply put, I moderate this blog.

I also happen to be blind.

A computer program called JAWS reads the text on my screen out loud to me. That’s how I’m able to read your comments to the Easter Seals autism blog. People I meet are fascinated with my talking computer -– I suppose anyone can close their eyes and imagine what it is like to be blind, so they take a special interest.

Imagining what it is like to have autism –- and how computers can help people with autism — is not as easy. So I appreciated this blog post explaining how communicating online can help people with autism develop skills they need for everyday interaction.

You see, for people with Autism, it is difficult (if not impossible) to read our society’s unwritten social rules. How do I know when someone is angry? When they are happy? When they are frightened? Most of us, from time to time, and in a given social setting, intentionally or unintentionally, give off mixed signals to the world around us. And most of us, from an early age, learn to decode and understand these signals. People with Autism misinterpret or lack understanding of these signals … The online environment simplifies those emotional states (a smiling face for “happy,” a frown for “unhappy,” etc). For people with Autism, it is a safe way to develop skills they need for everyday interaction without leaving the security of their own computer.

You know, until someone told me what emoticons were, I could not figure out why the heck my talking computer kept shouting out the words “colon right paren” after every funny line in an email message. I’m glad I found this blog post — I mean, who knew those silly smiley faces could be so helpful?

 

Perfect match: baby boomers volunteering for families with autism

The task of providing 24/7 supervision for a child with autism can be overwhelming, and short respite breaks can be an incredible support to families. Many Easter Seals affiliates provide respite services, but we know we are not meeting the growing need.

Enter one very much appreciated friend of Easter Seals. A generous donor has funded a program to build a curriculum to train older adult volunteers to provide respite care for children with autism. What a match — meeting the needs of families experiencing autism and the desires of baby boomers to contribute.

The Alliance for Nonprofit Management reports that baby boomers seek out meaningful ways to volunteer, and this program should provide just what they’re looking for. We are in the beginning stages of curriculum development. Easter Seals and our collaborative partners — National Council on Aging, Generations United, Watson Institute, the Corporation for National and Community Service, and the Autism Society of America — have met and look forward to expanding opportunities for baby boomers to volunteer. Stay tuned — we’ll let you know when the curriculum is ready to go.

 

Can a swimmer with autism compete in the Paralympics?

Those of you who appreciated the blog Jim Williams wrote about Special Olympian Jamie Smith might want to take a look at a story in today’s New York Times. It’s about a swimmer who has cerebral palsy, mental retardation and autism. Kendall Bailey hopes to compete in the Paralympics this year, but team officials had formally requested that he be rendered ineligible for the Beijing Games.

Kendall Bailey is a rare case of a mentally disabled athlete who also has the physical disabilities to qualify him for the Paralympics. But in April, amid confusion about how disabled athletes are classified both before and during the Games, officials who oversee the American team on behalf of the United States Olympic Committee formally asked that Bailey be ruled ineligible.

Bailey’s mother believes it was her son’s autism diagnosis that worried the US Paralympic officials.

“Just because he has other issues, he’s been looked at in a whole different way that hasn’t been fair,” she said. “He’s been singled out and isolated because of his autism, because of his intellectual disability. If Kendall wasn’t autistic, would any of this have happened? Absolutely not.”

What do you think?

 

Maurice Snell inspires Joe Mantegna, and vice-versa

Maurice Snell and Joe MantegnaFriday, June 13 turned out to be a lucky day for Easter Seals Metropolitan Chicago. Emmy and Tony Award winner Joe Mantegna returned to his native Chicago to share his perspective of Easter Seals Metropolitan Chicago’s New Therapeutic School and Center for Autism Research. He took a visit inside the nearly completed autism program and adored everything that was in the school.

At first, Joe told his own story about his family life, which includes his older daughter Mia, who is autistic. He explained the trials and tribulations he and his family suffered during the early part of Mia’s life. The road was rocky, but Joe and his family have stayed together and are optimistic about his daughter’s life.

He went on to express his involvement with the Easter Seals organization. The most interesting part of the conversation was me asking the question of what inspired Joe to represent Easter Seals. His response: yours truly.

At first, I couldn’t believe it. But I knew he was saying it from the heart. If I were to thank Joe in person, I would tell him, “Thank you for your words of inspiration to the Easter Seals family. I see you not only as a spokesperson, but also a philanthropist and humanitarian for people with autism, including me. Whenever you come back into town, I would love to meet Mia.”

There are many individuals with autism who have a chance to do other things, like become a nuclear technician, graduate with a PhD from Harvard, whatever it is, you name it. I was fortunate enough to graduate from college and get offered a job at Easter Seals. And now, I’ve inspired Joe Mantegna!

 

Maurice touts fan-friendly autism center

Summer is right around the corner, and what’s about to happen this summer is a new era for Easter Seals and autism.

As of now, we at Easter Seals Metropolitan Chicago’s New Therapeutic School and Center for Autism Research are spending the final days at 1950 W. Roosevelt Road, with a new horizon just two blocks away at 1939 West 13th Street.

Beginning July 7, Easter Seals will officially open the new state-of-the-art therapeutic school and center for autism research. The new school will be one of the elite autism programs for not only Chicago, but for the whole country. It will be fan-friendly to many needy families of individuals with autism.

The interior of the building will feature two floors of classrooms, along with several therapy rooms for many students to get highly involved in. The exterior will feature a playground for students, plus a custom-made baseball field, named for the Chicago White Sox. I grew up on Chicago’s south side and have always been a White Sox fan, and while I am writing this they are in first place. No matter what happens the rest of the season, I will always be a fan of this White Sox charity that pledged one million dollars towards our new school.

Easters Seals of Metropolitan Chicago also will receive $1 million toward construction of the new Therapeutic School and Center for Autism Research. The school, located in the Illinois Medical District in Chicago, will be a world-class, one-of-a-kind facility, teaching people with the diagnosis of autism how to live independently, how to get a job and about life skills, in general, as an example.

In conjunction with this grant, White Sox manager Ozzie Guillen has agreed to be the spokesperson for Easter Seals for its autism program.

“That’s something we really wanted to be a part of,” said [White Sox senior director of community relations Christine] O’Reilly of the Easter Seals’ program, with this new facility also naming its baseball field in recognition of the White Sox.

I have seen or visited the construction site since Day One. I never thought the different beams being welded together along with concrete would form into a nice, comfortable setting for many people. During my past visits, there were construction people working the interior to make sure everything on the inside stays perfect, in mint condition, all set for the official grand opening. While they continue to work on the Therapeutic School, some of the staff at Easter Seals Metropolitan Chicago already feel right at home in the new building. The Metropolitan Chicago administrative offices have already made their transition to the third floor of the building, with much more office space plus many more amenities for the staff to enjoy. Working in the new building is like heaven on earth!

 

Share your expertise: what autism services do you need?

Here at Easter Seals Southeast Wisconsin, we are beginning a discussion on new programs we can offer to families living with Autism. Right now we deliver therapy services as part of the P.L.A.Y. (Play and Language for Autistic Youngsters) Project and offer a chance for siblings of individuals with disabilities to talk about their feelings in “Sibshops.”

We started both these programs after hearing from members of the autism community about the services they felt they needed. Now we are considering what more we can do as a provider. Should we begin an ABA program? Develop new respite options for families and children with Autism? Maybe develop specialized pre-school programs for children with Autism? Maybe work training programs for young adults with Autism? How about developing outreach efforts so people understand what life with Autism is like?

We wrestle with some issues, too. Should children with Autism be with their typically-developing peers or should we provide specialized programs like a pre-school program? I am asking you, our friends in the Easter Seals blogosphere, to give us some feedback — we would love to hear from you. If you have a child with autism, what services does your family need and want? If you are an adult with Autism, are there services you need? Do you have a model you might suggest to us that has worked for your family? Your ideas will be invaluable in our plan to expand our services.

 

Making the Internet work for people with autism

Do people still actually use those big books of yellow pages? I suppose so. But I must say, I can’t remember the last time I looked up a phone number or address that way. Why do that when I can access information more quickly using a Web browser?

The ability to utilize the internet is key for staying connected to the world. Web sites and Web browsers need to be designed to ensure that people with disabilities can access this content too.

A terrific Associated Press article this week highlighted a creative grandfather who wanted his grandson to have access to the web. His grandson has autism and needed some accommodations.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn’t find anything satisfactory. So he had one built, named it the Zac Browser for Autistic Children in honor of his grandson, and is making it available to anyone for free.

The browser is available at www.zacbrowser.com.

Another tool for increasing web accessibility for individuals with disabilities is Webwide, a symbol enabled web browser. Individuals with autism may be able to interpret and understand information more successfully with the symbol supports and added visual cues Webwide provides.

Web access is important for everybody — people with and without disabilities. The Web Accessibility Initiative (WAI) develops strategies, guidelines, and resources to help make the Web accessible. With tools like Zac Browser and Webwide, individuals with autism may have greater success when they surf the net.