Children with autism grow up to be…adults with autism

by Beth Finke

An article in the Arizona Republic last Sunday reminds readers that children with autism grow up to be adults with autism. The reporter points out what so many tend to forget. Autism is not a childhood disorder. It never goes away.

The child born in 1980 – the year the American Psychiatric Association first added autism to its list of known mental disorders – is now nearly 30 years old.

The story tracks a couple of young adults with autism, including Eric Foley. Eric graduated from high school at age 20. He has lived with his parents Rob and Donna Foley ever since.

Rob and Donna have worked hard to leave Eric financially secure, but for Donna, the question of Eric’s future is not as simple as money.

“I’m 60. I’m not going to live forever,” Donna said. “Who is going to care for him? Who will treat him with tolerance and patience? Who will love him?”

The story credits our Easter Seals Living with Autism Study for providing quantifiable information about the services and supports that families living with autism desperately need.

In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older.

The details of the study told a story that parents of children with autism have known all along.

• 76 percent of teenagers with autism over the age of 16 have never looked for a job.

• 79 percent of parents of children with autism are “extremely” or “very” concerned about their children’s future independence. Of “typical” parents, by comparison, 32 percent are equally concerned.

• 79 percent of adults with autism still live at home.

Easter Seals stands out as the nation’s leading provider of services and support for children — and adults — living withautism. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need. More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

ASA & other disability organizations: “Sotomayor is our champion”

by Beth Finke

With the Senate confirmation hearings for Associate Justice of the Supreme Court starting today, I thought our blog readers might be interested in what activists for people with autism and other disabilities are saying about Judge Sonia Sotomayor. The Autism Society of America, along with dozens of other disability groups, signed a letter supporting Sotomayor’s confirmation. The letter was sent to Senators Patrick Leahy (D-VT) and Jeff Sessions (R-AL).

From a press release put out by the Bazelon Center for Mental Health Law:

Her empathy is evident, as is her understanding that judges’ decisions interpreting these federal laws have real-life consequences for people with disabilities and their opportunity to participate in American life.

Lastly, a quote from Andrew J. Imparato, President and CEO of the American Association of People with Disabilities:

When we met with the White House Counsel, we emphasized the importance of President Obama using this opportunity to put someone on the Court who has a demonstrated commitment to and understanding of the laws that protect our civil rights and safeguard our human dignity. Based on our preliminary analysis of Judge Sotomayor’s extensive record on the bench, we are encouraged that she may be the champion we have been looking for. Her jurisprudence in the disability area shows that she has a good understanding of the real-life implications of her decisions, and sees the important connections between disability rights laws and other civil rights laws. Her personal experience as a woman with childhood-onset insulin-dependent diabetes gives her additional insights that can inform her approach to disability issues. We look forward to studying her record in more detail, and working on a bipartisan basis with the Senate to make sure that her approach to disability law is explored as part of the confirmation process.

The Bazelon Center for Mental Health Law reviewed a selection of Judge Sotomayor’s district court and Second Circuit decisions. Read the analysis and “judge” Sotomayor for yourself.

July 15 is deadline for ASA conference scholarships

by Patricia Wright

Individuals with autism and other disabilities can be disenfranchised in our society. People who are ethnic minorities can also be disenfranchised in our society. Put these two together and it can have a multiplying effect. TASH (formerly The Association for the Severely Handicapped) is a civil rights organization for, and of, people with mental disability, autism, cerebral palsy, physical disabilities and other conditions that make full integration a challenge. The organization is using a unique initiative to try to mediate these inequities. Through grant funding from the W.K. Kellogg Foundation, TASH provides individuals of color and/or a family member enhanced access to the resources of various disability human rights organizations. As of now, this project is the only nationwide initiative that focuses on eliminating disparities encountered by individuals with double minority status.

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.

Book review: Bruce Shapiro & Pasquale Accardo’s “Autism Frontiers”

by Matt McAlear

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.

What Harry Potter can teach us about autism

by Beth Finke

Attention all “Muggles”: To celebrate the long-awaited paperback release of Harry Potter and the Deathly Hallows tonight (The book goes on sale at midnight on July 7), we are publishing a Harry Potter post from our 2007 archives — enjoy!

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.

Reimbursement for special ed at private schools

by Beth Finke

A story on NPR’s All Things Considered explains how a Supreme Court ruling last week makes it easier for parents of special education students to get reimbursed for private school tuition.

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.

Congratulations to high school grad with autism

by Beth Finke

Yesterday’s New York Times featured a terrific story about a high school graduate who has autism. Dan Mulvaney’s story starts like so many others about kids diagnosed with autism:

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.

People with autism need health insurance reform

by Katy Beh Neas

Too many people with autism and other disabilities are forced to make major life decisions based on whether their insurance meets their individual needs. Parents of a child with autism take out a second mortgage to pay for therapy that helps their child learn and manage his behavior. A young couple decides they cannot get married because one of them has Medicaid coverage which will be lost when their individual incomes become joint incomes and they cannot access private insurance.

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.

Does Spock have Aspergers?

by Beth Finke

It dawned on me over the weekend. I’d let Father’s Day slip by without publishing anything here about autism and fatherhood. Shame on me!

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.

Adults with autism thrive at new inclusive adult day center

by Bob Glowacki

When we think of autism, we tend to think of early childhood therapeutic interventions. I received a reality check when Easter Seals Southeast Wisconsin opened a new inclusive adult day center in Kenosha. The center is located inside the YMCA of Kenosha Callahan branch, and the first three participants who enrolled there have autism. Later on, more adults with autism signed up. As of June, the enrollment is a total of nine participants — six with autism. The youngest is 19, and the oldest is 60.

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.