Autism is global

by Patricia Wright

A reader from the Philippines commented to our blog with a question about autism services. I know of two support organizations in the Philippines: Autism Pinoy and the Autism Society of Philippines.

Those of you who read my blog about attending the Asian Autism Conference know I was lucky enough to go to Hong Kong last year.

The Autism Parents Network of Hong Kong sponsored the event and organized the extensive array of learning opportunities. The message from parents, who reside throughout Asia (Hong Kong, mainland China, Philippines, Japan), was the same — we need information and support.

I have never had the pleasure of traveling or working in the Philippines, but I do know that The Autism Society of America (ASA) hosted an autism confrence in the Philippines in 2007. Having just returned from a weekend of learning and sharing at the ASA conference in Orlando, I am hopeful that the 2007 conference in the Philippines also brought people together to increase knowledge and understanding.

Sleepless on the spectrum

by Beth Finke

Our son has never slept well. At home he always had problems falling asleep, then had problems staying asleep. As a result, so did we.

I used to think, “well, that’s just Gus. It’s part of his personality.” But after reading a post on Autism Research Blog: Translating Autism I realize Gus isn’t the only kid with a disability who found it hard to fall asleep at night.

Parents of children with autism usually report that their children experience significant sleep problems, such as difficulty falling asleep. Yet, little research has been conducted on the specific type of sleep difficulties prevalent among children …

The blog post reviewed an article in the Journal of the American Academy of Child & Adolescent Psychiatry called Sleep Patterns in Preschool-Age Children With Autism, Developmental Delay, and Typical Development. The study found that children with autism sleep significantly less than typically developing kids in a 24-hour period. Of particular interest to me was the fact that typically developing kids had more awakenings than children with autism, but when kids with autism woke up in the night, they’d stay up significantly longer. This was always the case with our Gus.

This suggests that while children with autism do not seem to have difficulty staying asleep, they do experience difficulty falling asleep after sleep interruptions.

Gus is 21 years old now. He lives in a group home. Staff members there report that when Gus wakes up in the middle of the night, it’s pretty impossible to convince him to go back to sleep. It goes without saying that we miss Gus very much since he moved away. Still, I gotta admit … I really do appreciate a full night’s rest now.

Autism Society of America Conference

by Patricia Wright

I’ve been home a few days and am still sorting through all the information I gathered and the business cards I collected over the past weekend. I made so many wonderful contacts at the Autism Society of America (ASA) Conference! The three days that I spent learning and sharing were fantastic. The ASA conference is a great place to learn about what others are doing and share what is happening at Easter Seals.

I think one of the best features of the ASA Conference is how many individuals with autism attend. While spending time at the Easter Seals booth — or attending social events at the conference — individuals with autism were always around, an active presence at the conference.

I had the pleasure of sharing a van ride with James Williams who shared his perspective on the conference. When I asked him what he prefers about the ASA conference, James said, “The ASA conference is accepting.” I would absolutely agree. James spoke at last year’s ASA Conference. My colleague Ellen Harrington-Kane’s blog about James is here.

Learning and sharing in Orlando

by Patricia Wright

I am one of the lucky ones — I get to spend four days in Orlando at the Autism Society of America Conference. This conference brings together individuals on the spectrum, family members, experts and professionals. Easter Seals is proud to have a formal partnership with Autism Society of America. We’re here to learn and share. Through collaboration, we all become better able to meet the needs of individuals with autism.

Easter Seals has a booth in the exhibit area and will be presenting sessions about our autism services. We’ll be sharing information about three hot topics: State Autism Profiles, Study about Living with Autism and our Spanish-Speaking Hotline.

Autism insurance and legislation information is a topic of interest to many. Easter Seals, in collaboration with Autism Society of America , has gathered state-by-state information regarding autism. Check out our State Autism Profiles to see what’s happening in your state.

Easter Seals is interested in learning about the needs of parents and individuals with autism. Working alongside ASA, we’re currently gathering important data on this topic through a “Living with Autism” study being funded by one of Easter Seals’ national corporate partners, MassMutual Financial Group. If you sign up to receive our monthly enewsletter, you’ll be sure to hear from us when the results of this study are ready to share in early 2009.

Spanish speaking families and individuals with autism need information and support. Addressing health disparities is important to Easter Seals. To help address this need we have a dedicated spanish-speaking telephone hotline. A Spanish speaking information referral representative is available Monday to Friday, 9:00 a.m. to 5:00 p.m., Central Time, at 800.353.1799.

The Autism Society of America Conference is a wonderful place to build relationships and learn from each other. I look forward to sharing our three Easter Seals hot-topics and learning from the other attendees. If you too are one of the lucky ones attending the conference, stop by our booth and say hi!

Any lists of books about autism?

by Beth Finke

I’m back from the American Library Association annual conference — I was there with my Seeing Eye dog Hanni to accept a Henry Bergh children’s book award from the American Society for the Prevention of Cruelty to Animals (ASPCA). You can find out more than you’d ever want to know about the award ceremony, what I wore, how my dog behaved (and didn’t behave!) by linking to my personal blog about my book tour adventures with Hanni.

In addition to attending the award ceremony, Hanni and I spent plenty of time in the conference exhibit hall. If you read the post I wrote for the Easter Seals autism blog before leaving town, you know I promised to visit a booth sponsored by Wiley.

Wiley published Understanding Autism for Dummies, written by Stephen Shore, Linda G. Rastelli and Temple Grandin.

Unfortunately, Wiley did not have a copy of the book on hand. A saleswoman at the booth offered me a brochure that listed all the books in their “Dummies” series, but I was afraid to take it. Seems to me a list like that might only reinforce how little I know about things!

Wiley’s offer of a list of books made me wonder. Are there any lists of books about autism? I know Amazon’s list of children’s books about disability is helpful, and the National Dissemination Center for Children with Disabilities offers a list of hundreds of books for children and categorizes them by disability. If you know of any book lists devoted just to autism books, though, please let me know. At the conference, it was inspiring being around all those books and all those people who love to read. Rather than leaving me feeling like a dummy, it motivated me to want to learn more.

The Autism Chronicles

by Patricia Wright

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

by Beth Finke

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.

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

by Patricia Wright

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 :)

by Beth Finke

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

by Patricia Wright

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.