Working with undiagnosed autism

by Debbie Smith

The media does a fantastic job on reporting the benefits of early diagnosis and treatment of autism, but the needs of older individuals have to be addressed too.

I’ve been working with individuals with disabilities for many years. About 10 years ago we had a huge increase of children being diagnosed with Attention Deficit Disorder (ADD) and Attention Deficient Hyperactivity Disorder (ADHD). Many of these individuals were treated with psychotropic medications to control their behaviors. Many did not respond appropriately or learn basic academics. So then they’d get a new diagnosis: Cognitive Learning Disability.

These individuals are 18 years old and older now, and when we review their needs we see key characteristics of autism. Do they have the diagnosis of Autism? NO. But do they have the limitations/challenges of an individual with Autism? YES.

Locating long-term supports for these individuals is very challenging. They often become drop-outs, involved in the mental health or judicial systems, with no opportunity for career success that focuses on their strengths.

Our workforce is missing out on an incredible pool of individuals ready for detail, routine and process!

Documentaries help the public understand autism

by Beth Finke

A story in last Tuesday’s LA Times highlights three documentaries that attempt to put faces on autism.

With estimates of children with an autism disorder running as high as one in
166, several new documentaries — Autism Every Day, Autism: The Musical and Her Name Is Sabine — are attempting to broaden the public’s understanding of the condition.

One of the documentaries — Autism: The Musical — has been getting lots of positive reviews since its HBO premiere on Tuesday. Autism: The Musical is the story of five children with autism and a woman who leads them in performing their own musical. If you missed the premiere, Autism: The Musical is available in its entirety online, at hbo.com. I haven’t seen (okay, heard) it myself yet, but the reviews are so compelling, I may give it a try this weekend.

Governor awarded for autism advocacy

by Bob Glowacki

Well, we had plenty of excitement yesterday with a visit from Jim Doyle — he’s the governor of Wisconsin. He came to our adult day services center in Wauwatosa to receive the National Easter Seals Outstanding Advocate of the Year award. Governor Doyle received the award for his work towards improving access to services and his support in closing institutions and providing funding for community settings.

Denise Rozell, Assistant Vice President of State Government Relations at Easter Seals’ Office of Public Affairs, presented the award. She was impressed by the governor’s passion for Autism services and his support of community options in long term care. The Governor also supports a bill to mandate health coverage for Autism Services in our state – you can read about that in the blog I wrote on health insurance for people with autism.

Yesterday’s ceremony featured the Easter Seals Wil-O-Way Color Guard (made up of participants from our recreation programs) and a talk by an Easter Seals participant who moved from a state institution to a group home. He told us he had recently taken the handcuffs off a stuffed animal he owned because, like the stuffed animal, he felt—free! It was a very emotional moment, and it was a great day to be part of Easter Seals!

CNN wants to hear your autism story

by Lisa Tate

On Wednesday, April 2, CNN Medical News is planning to devote their entire day to autism coverage.

If autism touches your life, CNN wants to hear your story. They are hoping to dispel misconceptions about the disorder in a report called Myths of Autism and are interested in what you think the prevailing myths about autism are.

I’m planning on submitting a story myself — it’ll question the belief that Autism cannot be reliably diagnosed before a child is three years old. If you want to Contact CNN, too, go to CNN’s health blog to see the topics the network plans to address and how to share your story.

It’s Easter Seals time!

by Beth Finke

This Sunday is Easter, and that holiday always brings Easter Seals to mind. We sometimes get questions at this time of year about how we got our name, or how the seal campaign began.

These questions and more were answered this morning when James E. Williams, Jr., the President and Chief Executive Officer of Easter Seals, was interviewed on national Fox Business Network’s Money for Breakfast program.

If you missed the show, you can watch the interview online.

The interviewer showed off this year’s seals while asking questions — she couldn’t help but admire the artwork. Easter Seals supporters are already receiving their first look at the new lily seals designed by this year’s winning artists.

You can become a part of an American tradition, too — donate online today to receive your own 2008 seals. And send your loved ones free Lily eCards.

It’s a sure sign that spring has arrived!

Dreams come true for Easter Seals staff member

by Beth Finke

When their house got hit by Hurricane Katrina, Easter Seals of the Gulf Coast (AL) staff member Lydia Gaudet and her family decided they could live with the damage. She and her husband Steven immersed themselves in disaster relief, and their eight children helped clean up neighborhood yards.

The family’s selfless dedication to helping others inspired members of the Mobile community to nominate them for Extreme Make-Over: Home Edition. Last month the Gaudets learned their severely distressed home — a 50-year old house battered by Hurricane Katrina, a small house fire and the natural wear and tear of eight children – had been selected for the show. Since that time, a team of designers, volunteer contractors and workers have demolished the old house and built the Gaudets a brand new one. You can see it all on ABC-TV’s Extreme Make-Over: Home Edition this Sunday, March 23, at 7 p.m. CST.

Lydia’s job as volunteer coordinator at Easter Seals of the Gulf Coast (AL) inspired her to start free parenting classes with an emphasis on parenting children with autism and other disabilities. She has also coordinated Easter Seals Alabama’s literacy program for adult non-readers and family literacy services.

During a family vacation underwritten by ABC, the Gaudets were the network’s guests at the Super Bowl. While at the game, they struck up a conversation with a group seated in front of them — which happened to be a group of executives from CVS Caremark. As one of the advertisers for Extreme Make-Over: Home Edition the CVS Caremark executives realized who the Gaudets were. Once they learned of Lydia’s work with Easter Seals, they arranged for a $25,000 donation from CVS Caremark to Easter Seals of the Gulf Coast. This generous gift will support Lydia’s dream of having a beautiful, family-friendly environment at the center where the love of books and reading can be nurtured among families – especially families with loved ones who have special needs. The two-room area will be named the Gaudet Family Literacy Center.

Don’t miss Extreme Make-Over: Home Edition this Sunday. Be sure to have some tissues ready, though – I predict many happy tears.

Marlee Matlin: Dancing with a disability

by Beth Finke

If you missed Dancing with the Stars last night, you missed Academy Award winner Marlee Matlin’s debut as one of the contestants. We at Easter Seals were especially interested in Matlin’s moves on the dance floor — she is an Easter Seals Honorary Board Member!

Last night wasn’t Matlin’s first time on a reality TV show, though. She recently appeared on Extreme Makeover: Home Edition to present a $50,000 college scholarship to Stefan Vardon. Stefan’s parents are both deaf and his younger brother has autism.

Matlin is an amazing advocate for people with disabilities and has shared her talent and her disability with a generation of filmgoers and TV watchers. She says her new challenge in DwtS is the dancing — and five-day-a-week rehearsals. Whether she wins or not, her performance on the dance floor is another wonderful demonstration of what people with disabilities can do.

New NY governor shows how “All Kids Can”

by Beth Finke

I was lucky enough to be on Long Island last week when they made the announcement about New York’s new governor. I’d flown to New York by myself – well, with my Seeing Eye dog — to visit elementary schools there. The idea was to promote my children’s book and teach the kids how Seeing Eye dogs work.

In the end, I talked with the kids about politics, too. They’d heard David Paterson was going to be their new governor and wanted to know what it meant to be “legally blind.” They also wanted to know where he went to school when he was a kid.

An AP story reports that David Paterson was included in regular classrooms in the 1960s, long before inclusion was popular.

When New York City schools refused to let him attend mainstream classes, his parents established residency on Long Island, where they found a school that would let him go to regular classes.

The kids wondered why he couldn’t have gone to normal schools in New York City — It doesn’t seem extraordinary to have kids with autism and other disabilities in their classrooms. They felt lucky their new governor went to school on Long Island, just like they did.

We’ve come a long way, baby.

Today, more than 95 percent of students with autism and other disabilities receive some or all of their education in regular classrooms. All Kids Can helps make this happen. A charitable trust, All Kids Can is a five-year, $25 million commitment to making life easier for children with autism and other disabilities.

Through the All Kids Can trust, CVS helps non-profit organizations like Easter Seals raise awareness in schools and in local communities about the importance of inclusion. In 2007,$350,000 in All Kids Can Fund grants went to support Easter Seals affiliates across the country.

It’s programs like “All Kids Can” that leave schoolkids shrugging their shoulders, wondering what the big deal is about having a kid with a disability in their class. Now with Governor Paterson leading the way, maybe it will become more and more common to see people with disabilities in higher positions. I can look forward to a day when schoolkids will shrug their shoulders and wonder why, way back in 2008, everyone thought it was such a big deal that a guy who had a disability held such an important job

Book review: Mark Haddon’s “The Curious Incident of the Dog in the Night-Time”

by Heather Pint

The Curious Incident of the Dog in the Night-Time tells the fictional story about a young boy, Christopher, who is determined to solve the murder mystery of his neighbor’s dog. Written from first person perspective, Christopher describes his detailed plans to find the criminal. As the story unfolds, Christopher discovers other mysteries along the way that force him to step outside the comfort of his small town community and into a world of uncertainties.

From his anecdotes of his dreams of becoming an astronaut to his extreme distaste for anything yellow, Christopher humorously provides insight into the inner-working of an individual with autism.

One part I found particularly interesting was when Christopher describes the plethora of “behavior problems” he had as a younger child. Specifically, he states that he said things that other people think are rude. In a footnote, he goes into more detail about the confusing nature of being an effective social human being:

People say that you always have to tell the truth. But they do not mean this because you are not allowed to tell old people that they are old…

As a behavior/inclusion specialist, I found this particularly enlightening because individuals with autism are often reprimanded for their “social behaviors” when as professionals we have done them a disservice by not giving them the road map to navigate our social world.

If wit, mystery and insight into individuals with autism interest you, read The Curious Incident of the Dog in the Night-Time.

Health insurance for people with autism

by Bob Glowacki

Most states do not require private insurance companies to cover even essential autism treatments and services. Nationwide, few private insurance companies or other employee benefit plans cover Applied Behavior Analysis (ABA) and other behavioral therapies. In fact, many insurance companies designate autism as a diagnostic exclusion, meaning that no autism-specific services are covered.

There are 16 states that require health insurance companies to cover therapies for autism. Our state of Wisconsin could join that list. A bill passed by the state senate awaits a decision in the Assembly and needs to be voted on by this Thursday, March 13 — when legislative sessions end.

After the Senate Bill (SB 178) passed with a vote of 25 to eight, Wisconsin realized that this is not an issue of democrats versus republicans — it’s a bipartisan issue with support from both sides of the aisle.

Gov. Jim Doyle, along with Senate and Assembly democrats and republicans, made a plea to the Assembly to at least hear this bill in session. Doyle remarked that Wisconsin families are not trying to get something for nothing with this legislation — hard working families who do their part and insure their families are just looking for the same coverage insurance companies give to so many other people with disabilities.

On February 28, supporters gathered at the state capital to rally the Assembly to take action. It was heart-breaking to hear the story of one family told by the grandparents of a young boy with autism. Their son, they said, works long hours to make sure he can provide for his family, including health insurance. But at the end of the day, there isn’t any more money to pay for autism therapy. And since their grandson is at the bottom of a two year waiting list for the Medicaid Waiver; other family members have been contributing money to help pay for some therapy.            

Families who have children with autism know that delivering treatment as early as possible gives children the best chance at life. But with the steep out-of-pocket costs and long waiting lists for state programs, Wisconsin families are looking for answers. 

Hopefully, the Assembly can provide them. Let Wisconsin legislators know how you feel about this issue — you can find their email addresses at the Wisconsin State Legislature
Web site.