In a TASH Connections newsletter, Ralph Edwards, Chair of the TASH Diversity Committee, said it this way:

It is our hope that [people] will understand how having a disability and being faced with racism and ethnic discrimination compounds the challenge of accessing meaningful services…Employment, health status, life expectancy, access to housing and support services, educational attainment, involvement in
the criminal justice system, etc. are more negative for individuals of color with disabilities. While this is not new information in the disability movement, it hasn’t generated research, policies, funding, and programs commensurate with the scope of the problem.

Scholarships to national disability conferences are part of this initiative — individuals of color with disabilities and/or family members are eligible to apply for scholarships. The upcoming Autism Society of America (ASA) conference is one of the disability conferences being supported by this effort. Those who are eligible and complete an application will receive a scholarship to attend the conference free, as well as a year long membership with ASA and TASH. Applications are due this Wednesday, July 15 on a first-come, first-serve basis. To learn more about the scholarship program contact TASH at 202-540-9016 or email them at pdjukes@tash.org or hkimmet@tash.org.

In Autism Frontiers: Clinical Issues and Innovations, authors Bruce Shapiro and Pasquale Accardo (along with their multiple collaborators) do a great job of covering a variety of topics in a concise 200+ pages.

Many of the topics — early intervention, labels & diagnosis, complementary and alternative medicine, educational interventions, effectiveness of medication, autism spectrum disorders (ASD) and co-morbid disorders — could have been stretched into longer publications. By keeping the book relatively concise, however, Autism Frontiers: Clinical Issues and Innovations provides a good overview and examination of medical and clinical research related to ASD.

Autism Frontiers: Clinical Issues and Innovations is seemingly targeted to a professional audience — the handouts and references included in the text should prove as nice additions to any clinician’s ASD toolbox. While not a “page-turner,” Autism Frontiers: Clinical Issues and Innovations does provide an up to date reference guide to the often confusing world related to autism spectrum disorders.

Harry Potter and the Chamber of Autism

July 24th, 2007

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.

The case started in Oregon — the parents of a teenager who was refused special education services at a public high school transferred the student to a private academy during his junior year, then sued the school district to recover the $65,000 they spent on private tuition. The Supreme Court ruled in favor of the parents.

Writing for the majority, Justice John Paul Stevens said it would be wrong to reward the school district for refusing to find a child eligible for special services. Attorney David Salmons represented the family and pointed out afterwards that the family has won only the right to argue for reimbursement.

“Keep in mind,” he says,” that the decision today does not guarantee the parents reimbursement for private school tuition. The parents have the burden of showing that there was a failure to provide a free appropriate public education, and they have the burden to show that their private placement was appropriate.”

Still, Lindsay Jones of the Council for Exceptional Children worries that the majority decision will hurt school systems by removing the incentive for parents to collaborate with educators.

“Under that situation,” she says, “parents don’t have to even seek special education services or work with the district before they ask that the district pay for their private placement.”

There’s hope this decision will encourage districts to act quickly to identify students with learning problems so that future cases won’t end up in court. It’ll be interesting to see how this all plays out.

Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finally the cold, terrifying diagnosis came.

The Mulvaney’s local Long Island school district didn’t know what to do with Dan. They told his parents that Dan would be better off at home or a “special school.” Dan’s parents thought differently. They didn’t want their son in an institution. They wanted him in a local school. They wanted him to live in his own house.

So instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way, Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.

Dan graduated from Long Beach High School last Sunday and will be moving into a group home with three other guys later this summer.

Dan and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.

Congratulations to Dan, and congratulations to his parents.

Easter Seals needs you to tell Congress to act now on health insurance legislation — this could be the “make or break” week on securing the federal health care reform legislation we need.

Take action — tell Congress. People with autism and other disabilities need health insurance reform now.

Last week Milwaukee Fox 6 TV featured an interview about our June 19 Walk With Me event.

The interview gave me an opportunity to spend some quality time with Stephanie Mayer and her son, Kyle. Kyle has autism, and he received a scholarship for inclusion in our P.L.A.Y. Project (Play and Language for Autistic Youngsters) last year.

We all had to wait over 30 minutes for the interview to begin, and Kyle was a pleasure to be with. He admitted he was a little nervous, and he held tight to his Buzz Light-Year and Woody toy for comfort. Eventually he cuddled next to his Mom and asked, “can I sit on your lap?”

Using cues from both P.L.A.Y. and new techniques from Applied Behavioral Analysis (ABA), Stephanie encouraged his positive behavior. You would never know the struggles the family had with Kyle just a couple years ago. I knew, though — and I was truly amazed at Kyle’s progress.

A number of months ago, the family allowed our P.L.A.Y. Consultant Amanda Dobberstein to share a few videos of Kyle. The first session showed Kyle playing with three sets of objects in less than a two minute segment. Kyle had his back to his Mom and little sister during the entire period. Kyle’s mom kept asking questions, trying to engage Kyle, but he was pre-occupied. No interaction, no warmth — just sharing a room, not sharing an experience.

Now, a year later he is cuddled up next to Mom with his toys in his lap using his “big boy voice.” Of course, moments before we headed to the studio, Kyle asked his mom, “can I go to the bathroom?” Mom answered, “not right now, dear.” Kyle waits. Patiently.

Throughout the interview Kyle sits quietly, the bright lights of TV shining in his eyes. Stephanie tells the audience how the Easter Seals autism Web site helped her realize Kyle’s need for services. What a great feeling it is to know we were there when he needed us.

Later that night, Kyle had over 30 people walk on his team at our Walk with Me event in Milwaukee. One of those walkers was Amanda Dobberstein, Kyle’s original P.L.A.Y. consultant. He and his Mom told nearly 400 walkers about the progress Kyle has made and how grateful they are to Easter Seals for providing the scholarship.

This was a day when all the pieces came together — years of planning, fundraising that resulted in a caring staff providing services that change a life. Kyle may need only limited services when he moves on to first grade next Fall because of the work of Easter Seals early on.

On a personal note, my daughter Molly tagged along to the interview. There she was, off to the side, clad in her Walk with Me tie-died t-shirt, hearing about what an impact the agency Daddy works for makes in someone’s life. She thought it was “totally cool” to meet Kyle and see a TV station. Hearing her say that Kyle is a lot like her little brother Tommy was another life lesson I was glad she gained that morning. And you know what? I thought it was “totally cool” to be at that TV station with Kyle and his mom, too.

One father I rely on for insight on this topic is Matthew Baldwin. Baldwin runs the blog Defective Yeti. The blog features posts on politics, writing, movies and the like. After Baldwin’s son was diagnosed with Autism Spectrum Disorder (ASD), Defective Yeti started publishing posts about autism, too. I’ve referred to Defective Yeti in an Easter Seals autism blog post before, and when I started searching on Sunday for something father-related, I was confident Baldwin had written something interesting I could link to belatedly about his relationship with his son. Sure enough, Matthew Baldwin does not disappoint. In a Defective Yeti post about a month ago, Baldwin links readers to an op-ed piece he wrote for The Morning News last month about the new Star Trek movie.

As I watched this film last Saturday and Mr. Spock walked onto the bridge with his stiff demeanor and his formal language, my initial reaction was: “Oh man, that guy is so Asperger’s.”

Baldwin goes on to point out that Spock’s difference from the rest of the crew is central to his character. The difference is largely mental, Baldwin says, and that’s part of the cachet.

He is a man of two worlds, and cherishes the dual nature of his heritage. Unlike Data (the android in Star Trek: The Next Generation who was forever pining to “be more human”), Spock is perfectly comfortable with who he is — not a bad message to send to kids whose neurological state is classified as a “disorder.”

Baldwin describes the way Spock views and analyzes the world in a different way than the rest of the crew. Though Spock’s insight helps the crew face challenges, he is criticized for being impassive and labeled an “unfeeling automaton.”

So too have those with ASD been habitually misunderstood, their reluctance to socialize mistaken for aloofness, their difficulty making eye contact interpreted as signs of deviousness. Emotions run deep in half-Vulcans and persons with autism alike, even if they are not always apparent to the untrained eye.

At the end of his op-ed piece, Baldwin acknowledges that some people with autism might not appreciate being compared to movie aliens. Still, Baldwin says, Spock gives him hope for his son’s future.

All I can say is that, as the father of an autistic son and a lifelong member of the Trek-curious club, the new film filled me with hope. Watching Kirk and Spock — two men with vastly different worldviews — form a friendship based on mutual trust and admiration, I found myself thinking, “that’s the future I want my child to grow up in.

Hope you dads out there had a happy Father’s Day last Sunday, and that you enjoy many, many more in the future. Live long and prosper.

While Easter Seals has been facilitating day programs in the Milwaukee area for many years, we are new to the Kenosha area in terms of providing direct care. Susan Klawien coordinates our new inclusive Adult Day Center in Kenosha, and I am pleased to introduce her as a guest blogger. Susan will share her thoughts on how the program operates and the level of support necessary.

Adults with autism thrive at new inclusive adult day center
by Susan Klawien

Our Kenosha Adult Day Services program is set up in an organized fashion — from a daily schedule of activities, to the room layout. There are places for our participants to receive sensory breaks within the room. We also give our participants the opportunity to select the activities they wish to do. This promotes independence and choice.

Through our collaboration with the YMCA, we have jobs for the participants, such as folding towels and sheets, caring for the indoor plants in the fitness area, and planting seeds in the gardens. They also learn specific activities of daily living skills each day.

Being an inclusive environment at the YMCA helps our participants adapt to surroundings and changes. YMCA patrons and staff have been welcoming in their daily interactions. Children in the YMCA’s after-school, day care, and summer camp programs have been curious, but have also shown respect and understanding.

Communication is a big factor. Some of our participants understand through sign language or verbal cues, others use different methods. Board maker pictures of the daily schedule are on the wall, and we use a dry erase board to list activity options. The options are erased after completion.

Adults with autism can — and do — lead meaningful lives. Easter Seals believes that with proper supports, adults with autism can all live, learn, work and play in their communities. Families living with autism need supports after their loved ones leave the school system. Providers need to prepare for the future strengths, needs, hopes and dreams of those individuals living on the spectrum.

Mary Andrus, Easter Seals Assistant Vice President for Government Relations and Co-Chair of the Consortium for Citizens with Disabilities’ Health Care Task Force, told committee members that, “an essential element of health care reform is ensuring that vulnerable populations have access to coverage that meets their care needs.” Andrus also stated that, “for persons with disabilities and chronically ill older Americans — arguably the most vulnerable populations in the nation — long-term services and supports are their primary unmet care need, and are critical to promoting health and preventing illness.”

Easter Seals believes that health care reform must guarantee that all Americans, including people with autism and other disabilities, have access to high quality, affordable health care that meets their individual needs.

What can you do? Contact your lawmakers and urge them to support health care reform legislation and to support inclusion of long term services in health care reform.