New reports on the ADA: I’m all ears

I lost my sight in 1985. Up until then I had been working as an advisor at a major University, counseling students who wanted to study abroad. Undergraduates would come in, we’d talk, I’d get on the phone and make sure their credits would transfer. It’s a job a person without sight could do. But the Americans with Disabilities Act (ADA) had not been passed yet. And I was fired.

This Thursday is the 17th anniversary of the passage of the ADA, and the National Council on Disability (NCD) is holding a news conference that morning at the Crowne Plaza Chicago Metro. I’m going to be there watching.

Or listening, I guess!

NCD is an independent federal agency that provides advice to the president, Congress, and executive branch agencies to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society. Sound familiar? Easter Seals provides services so that people living with autism and disabilities have equal opportunities to do just that: live, learn, work and play in their communities.

NCD has put together two new reports on the Americans with Disabilities Act:

  1. “The Impact of the Americans with Disabilities Act: Assessing the Progress Toward Achieving the Goals of the ADA” features a two-year study of the impact the ADA had on the lives of Americans with disabilities since the ADA was passed.
  2. “Implementation of the Americans with Disabilities Act: Challenges, Best Practices, and New Opportunities for Success” describes the experiences and ideas of employers, legal professionals, governmental entities, and individuals with disabilities when it comes to ADA implementation.

The reports will be released at the news conference on Thursday. I’ll be all ears.


Harry Potter and the Chamber of Autism

What can reading a Harry Potter book teach us about autism? Well, ask a teenager with autism who also happens to be a Harry Potter fan — he can tell you!

James Williams is 18 years old and speaks about autism regularly at conferences. He spoke at the Autism Society of America (ASA) conference I recently attended with others from Easter Seals. The speech James gave at the ASA conference was about being “In Search of the Proper Autistic Friend”.

The transcripts to all of the speeches James gives are available at his Web site – that’s where I found out how someone with autism could relate to the characters in Harry Potter books. In his cleverly-titled speech, “Harry Potter and the Chamber of Autism”, James describes how Harry Potter sometimes has trouble approaching his friends. James can relate. He also relates to Hermione, who obsesses over wizardry, fixates on specifics and is often accused of being a know-it-all.

Most importantly, James says that Harry’s feelings of relief after being “diagnosed” as a wizard are similar to his own feelings of relief being diagnosed with autism. Before Hagrid told Harry that he was a wizard, Harry had no idea that wizards who are angry tend to use magic even if they do not want to.

“Kids with autism often make things happen that they can’t explain,” James says. “And if they don’t know they have autism, they don’t know why, no matter how hard they try, they are always getting in trouble.”

Harry did well when working with teachers who acknowledged and worked with his special talents and needs. James can relate.


Autism-friendly screening: Harry Potter

If only we lived in England! Among all the buzz I heard this weekend about the new Harry Potter book I happened to catch wind of a theatre in Nottingham featuring a special autism-friendly screening.

“Harry Potter and the Order of the Phoenix” will air in a special “autism-friendly” setting at Broadway Cinema in Nottingham today at 1:00 p.m.

Sponsored by the Prince of Wales Arts & Kids Foundation, the film will be shown at a lower volume and with the lights turned on in the theatre during the movie. Broadway Cinema assures guests that they can move around and make noise during the show without being reprimanded.

If special screenings like this go on in the U.S., I’d love to hear about them.


Acting normal in a world that thinks you’re not

This week’s episode of This American Life, features stories about the developmentally disabled and people with special needs. One is Johnathan, a man on the autism spectrum. The program originally aired on National Public Radio in 2002 and is being replayed this weekend.

    Stories about people who were told that they’re different. Some of them were comfortable with it. Some didn’t understand it. And some understood, but didn’t like it.

As host Ira Glass says in the introduction, this program has “voices and stories that usually do not make it to the radio.”

Give it a listen this weekend, or listen online anytime.


Book review: Roy Richard Grinker’s “Unstrange Minds”

Read more about Unstrange Minds at Amazon

Recently I read the book Unstrange Minds:  Remapping the World of Autism by Roy Richard Grinker. Mr. Grinker has a daughter with autism. In this book he skillfully combines the story of his family’s journey through autism with comparisons of autism awareness, treatment and struggles of families in other countries around the world. I found the descriptions of how other cultures view and treat autism to be enlightening. It appears that even with the struggles we continue to have in the United States with funding, research, treatment models and access to interventions, we are much more fortunate than many of our peers in other cultures.

When I first learned of this book, I heard that the author denied that there is an autism epidemic. I was ready to read this book with a very critical eye. I was pleased to see that he is not denying that there is an unprecedented increase in the diagnosis of autism. He is discussing the history of the diagnosis and the evolution of our own country in the recognition and acceptance of this diagnosis. I found this book thought-provoking and would recommend it to those who enjoy learning of other families’ triumphs and struggles, and who are curious about how the rest of the world views autism.


Knock autism out of the park

As I mentioned in my previous blog, I had nothing much to do this summer, except for relaxation and spending time with family. However, that all changed in an instant when I was invited by Easter Seals North Texas to come back to Dallas to support another fundraiser.

Since I like high stakes and competition, I knew what was in store for me. It was the All-Star break in Major League Baseball and on the eve of the 78th Annual All-Star game that took place in San Francisco (another one of the cities I’ve visited), the Home Run Derby was held. Eight of the best major league home run hitters compete for the title and prestige of who can hit the most balls out of the stadium.

When I first arrived in Dallas, I ran into Will Johnson, Marketing Director at Easter Seals North Texas, along with the familiar faces I’ve seen in my previous visit. They all welcomed me with open arms. Last time when I visited, it was Autism Awareness Month (April) and I was the focal point of what Easter Seals would become in the future. In this event, however, it was a Home Run Derby challenge that was open to the public where the people picked the batter they thought would win it all. I wanted to participate in this pool as well, but I was told that I was there to deliver my speech, that’s it. It was a good thing that I didn’t participate because the batter who I thought would win got eliminated in the first round. Shows how much I know.

After the eight batters swung in the first round, they showed my video on the JumboTron in the outfield of the ballpark. In other words, my story was publicized to Dallas in some way. It was a nice display to the public.

After the second round (the remaining four batters hit), it was time to deliver my speech to the people at the ballpark. I spoke on how Easter Seals changed my life and how it can bring hope into this world.

Overall, it was a great trip. I got to reconnect with old friends and meet new people, including Miss Wheelchair Texas 2007 Jackie Bartels. Since we are heading into the second half of the baseball season, I encourage you to step up to the plate and hit a home run for Easter Seals. KNOCK AUTISM OUT OF THE PARK!


A new partnership and a new model of service

Lee Grossman is the President and Chief Executive Officer of the Autism Society of America (ASA). We’re happy to have Lee here as a guest blogger to celebrate the partnership between the ASA and Easter Seals!
– Jim Williams

A new partnership and a new model of service

by Lee Grossman

I’d like to echo Jim Williams’ sentiments. Bringing the Autism Society of America’s (ASA) advocacy and partners together with Easter Seals’ experience and scope of services will be an excellent fit.

For readers who are not here in Phoenix, let me tell you a little about the 38th ASA National Conference. This year we welcome nearly 1,500 attendees. Fifty are adults on the autism spectrum. About half are family members of someone on the spectrum and half are professionals dedicated to helping our community. Everyone is here to discuss ways to handle this burgeoning health crisis, and how to support families.

We’re excited about this partnership with Easter Seals. With it, we’re creating a new model of service that will better address the needs of individuals with autism and their families.

Read Lee Grossman’s biography.


The P.L.A.Y. Project: our presentation at the ASA Conference

Hello from the Autism Society of America (ASA) 38th Annual Conference in Phoenix. There are over 1,500 people attending the conference this year. They include representatives from nine Easter Seals affiliates plus headquarters staff.

This conference is unique because the attendees include not just professionals working with people with autism, but also individuals with autism, their families and caregivers. Here, families can hear from researchers, learn about service providers and network with other families who have similar experiences  It’s one of the few places where you really get a sense of the inclusiveness of the ASA, a grassroots organization started by families over 40 years ago.

Yesterday, Julie Dorcey from Easter Seals Michigan, Rick Solomon, MD, founder of the P.L.A.Y. (Play and Language for Autistic Youngsters) Project and I presented our session, The P.L.A.Y. Project: A Cost Effective Intensive Intervention for Young Children with Autism Spectrum Disorders. There were about 100 attendees, from all types of backgrounds.

The P.L.A.Y. Project, based on the DIR (Developmental, Individual-Difference, Relationship-Based)/Floortime model of Stanley Greenspan, MD, is an intervention for young children up to 6 years old. Easter Seals has embraced the P.L.A.Y. Project for three basic reasons:

  • At about $4,000 per year, it’s one of the most affordable interventions for families. 
  • It’s a parent coaching, family empowerment model that’s provided in the child’s home. Parents are coached in how to interact in a way that draws interactions from their child and begins to help them open and close “circles of communication.”
  • From a professional perspective, the training is provided in such a way that it creates competent, consistently high-quality home consultants.

There are currently 19 Easter Seals P.L.A.Y. Projects, with five more planned to start in the coming months.

Next year’s ASA conference is going to be in Florida.  I look forward to attending it, meeting new people and connecting with old friends.  I encourage you to consider attending as well!


Accessible accommodations at the ASA Conference

The hotel industry is customer-focused by nature, but here in Scottsdale, Arizona, the Westin Kierland Resort and Spa has taken hospitality to a new level in hosting the Autism Society of America’s (ASA) 38th Annual Conference.

ASA and Westin staff began laying the groundwork for the conference last fall, with much discussion on how to make the resort an especially comfortable and inviting place for people with Autism Spectrum Disorders and their families.

“It is very important to us that everyone feel welcome here. We wanted to minimize any guest concerns by paying attention to the details that would allow everyone to really enjoy themselves,” says Conference Services Manager Stacie Stephenson.

Some of those details have included staff sensitivity trainings attended by a representative from every department — so information could then be relayed to every person working in any capacity during the conference.

A waterfall in the lobby has been turned off for the duration of the conference because it might be distracting to individuals on the spectrum.

Resort chefs spent a great deal of time shopping for and preparing menus to guarantee that individuals with sensitivities to gluten and casein have a wide variety of food choices in each of the resort’s eight restaurants. The room service, box lunches and kid’s menus have also been modified to provide gluten-free, casein-free options.

Additional signage serves to make the sprawling accommodations especially easy to use. And extra staff is on-hand to provide assistance to any conference attendees needing a little extra time and attention.

“This is a positive learning experience for everyone involved, and our staff are truly benefiting as much as our patrons,” says Public Relations and Marketing Director Christie Noble.

Many people with autism and their families live in a society that may not understand or be accustomed to their needs. This year’s ASA Conference is themed Together a Brighter Tomorrow. The staff members here at the Westin Kierland have proven to be a great example of what we can all hope for.

Read Julie Dorcey’s biography.


Easter Seals partners with the Autism Society of America

Today is a very important day for people with autism and their families as well as for Easter Seals and the Autism Society of America (ASA). At the annual ASA conference here in Phoenix, we announced a formal partnership between the two organizations. Working together, we believe that we can advance the cause of research and treatment for those with autism much more effectively than if we were working separately.

I had the opportunity to address the attendees at the conference this morning, and the response to our partnership was warm and enthusiastic. There was a real buzz in the room as we talked about the possibilities and opportunities that will be generated by our working closely together.

So stay tuned as this partnership takes hold. I expect great things to happen both in the short term and the long term as a result. In the meantime, you can learn more here about the nature of the partnership and what we expect to accomplish as a result of these two strong organizations joining hands.