August is the best month

by Maurice Snell

Hello, folks! I know you probably miss me on the Easter Seals and Autism blog right about now. Well, I miss you too!

A lot has happened to me over the past few weeks and there will be more to come. My reign as Easter Seals’ 2007 National Adult Representative is coming to an end, but I’m willing to spend my final two months in grand fashion!

Recently, I traveled with Alex Steele, Associate Director of Marketing and Corporate Relations at Easter Seals, to New York for a great cause. The event featured many people golfing to fight autism. It was held at the perfect location too — the Trump National Golf Club in Westchester, New York.

Unfortunately, I wasn’t able to meet the Donald, as I had hoped to on my trip, but it was a great experience helping to raise substantial money toward Easter Seals and autism.

On August 23, I will be traveling to Decatur, Illinois for another Easter Seals event, courtesy of Easter Seals Central Illinois. I will get the chance to do many things, for example, being a part of the President’s Council and being on TV! And I hope to run into some of my family members (on my mother’s side) in Decatur.

It would be fitting to see family I don’t get to see often. They’ll hear my inspirational message to families of a loved one with autism. It’s important to always show your love for that person because that person has a unique gift and may use it during his lifetime.

On another note, I will be turning 24 this month! I will celebrate my golden birthday this Friday, August 24. Feel free to wish me a happy birthday via comments or emails. I will get back to you to give my thanks!

Right now I give my thanks to you for supporting Easter Seals and those families who know someone living with autism. I encourage you to keep up the good work and show that great support for that special someone!

What is intelligence?

by Patricia Wright

The unique nature of people with autism results in low performance in tasks that require a lot of social and communication demands. Sharon Begley’s Newsweek article, “The Puzzle of Hidden Ability,” describes how this inability to perform affects intelligence testing.

Traditional intelligence testing requires an individual to communicate and perform in a social manner; individuals with autism don’t do well in this type of testing environment. Many individuals with autism have a co-occurring label of mental retardation, perhaps because of this inability to perform on standard IQ tests. 

Begley shares that there may be a new method to assess the intelligence of individuals with autism, a method that does not penalize for social and communication deficits.

I have always wondered about the inherent value of intelligence testing.

Our society’s value of intelligence is extensive. When a parent shares that their child has a genius IQ, everybody’s eyebrows raise in admiration. The MENSA test can be found everywhere from in-flight magazines to Reader’s Digest. I know I feel good when I can at least answer a few of the questions posed on the test. 

What would it mean if I could not answer any of them?

What if I could answer all of them?

Would my ability to contribute to society decrease? Increase?

Will the value of individuals with autism increase because when their IQ is assessed differently, the results will be a higher number?

Individuals rise to expectations – those with autism and those without. 

I expect that all individuals with autism will become productive members of society. Given the proper supports - individuals with autism can be employed, have meaningful relationships and enjoy life in their community. 

This is what I expect of people with autism, a meaningful contribution to society while experiencing happiness in their life. 

I also expect society to provide the proper supports to make this quality of life possible. Right now, there are limited resources to individuals with autism. Employment rates are low and many adults with autism do not have places to live or positive recreation opportunities. 

Perhaps a modified test that results in a higher IQ for individuals with autism can lead to higher expectations, which in turn will push demand for proper supports to make achievement possible.

If you are interested in promoting support for individuals with autism now – make sure you share this desire with your legislators.

Autism…should health insurance cover treatment?

by Ellen Harrington-Kane

Listening to National Public Radio yesterday morning, I heard a news story about a parent who pushed through legislation in South Carolina to provide insurance coverage for autism services. 

As a person who has been a health care professional for over 25 years, it still amazes me that there is such a disparity and prejudice from our own health care system around diagnoses which are not physically obvious – like mental health and autism. 

Once again, we see that treatment for autism is not covered by insurance based on the fact it is labeled as “education.” Sometimes treatment is not covered when it is considered “experimental” despite evidence supporting it. And then there is the excuse that it is just “too expensive.”

How can this be? 

It’s a pretty well accepted fact that autism is a neurological condition. It is not just a matter of education. We also know that autism IS treatable. The National Academy of Sciences published a book in 2001, Educating Children with Autism, which reviews the treatments that are evidence-based and promising practices. 

Even the U.S. Department of Education admits that for every dollar spent on early intervention, seven dollars are saved in special education and other educational support services.

There are a growing number of states that are instituting laws requiring coverage of autism services.

When a person has diabetes, insurance companies pay for medical treatment. It is time to step up and do the same for individuals with autism. We don’t want people to die because they can’t get treatment for diabetes – nor should we allow people to languish because they cannot access treatment for autism.

Divorce and disability: is it all a lie?

by Beth Finke

My husband Mike and I have a 20-year-old son with severe and profound mental and physical disabilities. When I was trying to get my first book “Long Time, No See”  published, I said something in the cover letter to potential publishers about the divorce rate among couples who have a child with a disability.

I hoped the high divorce rate among parents of children with disabilities – and the fact that Mike and I were still married — would grab the attention of literary agents and publishers.

But now, Kristina Chew’s August 12 autismvox blog about divorce rates is questioning a statement made about autism and divorce in a New York Times story (subscription only) . The article is about a man whose teenager has autism.

The article states: “Adam, a son from his first marriage, had autism, accompanied by its common side effect, divorced parents.”

Chew notes the National Autism Association (NAA) cited an 80% divorce rate among parents of children with autism. “I have also seen a figure of 85% regarding the divorce rate among parents of autistic children,” Chew writes. “I am not sure about sources for these numbers.”

This all got me wondering.

Are Mike and I not as unique as I thought?

Was my cover letter a lie?

Has anyone ever really studied what the divorce rate is among parents with children who have a disability?

Has anyone studied the divorce rate among parents who have a child with autism?

After a bit of digging, I found a report from the National Center on Accessibility called “Becoming a Resilient Family: Child Disability and the Family System.”

The report says that despite the general impression that parents who have a child with a disability are more likely to get divorced, “there has been limited research in this area and it is inconclusive.”

It’s all interesting, really. No one has ever questioned me about the high divorce rate among parents of children with disabilities. Everyone knows families experience challenges as a result of the disability, but maybe we need to give our kids – and ourselves – more credit. Let’s talk about the closeness a family can feel as a result of the shared experience.

Autism, women and social success

by Patricia Wright

As an educator who focuses on autism, and as a woman, I found this recent article in the New York Times Magazine to be a call to action.

Author Emily Bazelon gives testimony to the significant needs of young women with high-skilled autism and Asperger’s Syndrome. The emotional distress, anxiety and depression young women with autism experience are all described. Apparently, the unique nature of being female can increase the challenges of this disability.

Every woman can reflect back on and describe the social navigation nightmare of adolescence.

Who can forget the experience of not being asked to the dance?

Or the horror of wearing the Adidas tennis shoes instead of the Nikes?

Or the flower patterned underwear underneath your white pants – who knew it would show through?

Yes, all of these are memories for me that still ring loud and clear.

Fortunately, I have the social acumen that allowed for recovery from these experiences. Young women with autism may not have easy access to these compensatory strategies.  

Specialized social skills instruction may be able to help alleviate some of the challenges for adolescents with autism. However, autism occurs four times more often in males than females. This diagnostic rate leads to low representation of girls in programs for individuals with autism, perhaps leading to even greater feelings of isolation.

As a feminist, I believe in social, political and economic equality for women. I strive to ensure that women have equal opportunity to achieve in these three areas. Soren’s article reminded me that to achieve social equality for women with autism, I have some extra responsibility.

One of the girls quoted in Soren’s article is named Caitlyn. Given proper supports, every girl with autism can echo her words: “Sometimes I feel like I’m weird and ugly – but I’m not going to today. I’m confident!”

I want girls with and without autism to be able to say this everyday.

Consumer Reports: providing for disabled heirs

by Beth Finke

In my “Adults and autism: Our kids might outlive us” post, I talked about estate planning and special needs trusts that can be set up when your child has autism. I also mentioned that MassMutual, one of Easter Seals’ national corporate partners, offers additional resources for people with disabilities and their families.

Here’s another resource to let you in on – an article on providing for disabled heirs in the August, 2007 issue of Consumer Reports Money Adviser says the American Bar Association’s (ABA) Commission on Mental and Physical Disability Law maintains an online directory of lawyers who are qualified to set up special needs trusts in your state.

The list is intended only as a research tool; neither the ABA nor the Commission on Mental and Physical Disability Law officially endorses any of the lawyers or legal service providers in this directory.

But at least it’s a start.

As I said before, I know it’s hard to add yet another item to a “to-do” list, especially when it concerns something as morbid as death! But knowing a child with autism has a special needs trust set up in advance can give parents and caregivers real peace of mind.

Fantasy football, real-life dreams

by Beth Finke

Here’s something else to consider when making your fantasy football picks for the upcoming August deadlines. Gene Wojciechowski’s espn.com column last week says that despite everything we’ve heard about steroids, dog fights and gambling in sports, there are still many good athletes out there.

One of the good guys Wojciechowski singles out is Ahman Green.

The column comments on a deal the Houston Texans running back made with his teammate Jason Simmons. On July 23, Green made good on his promise to make the down payment on a home for a single parent in exchange for reclaiming his jersey number from Simmons.

“Green got Simmons’ jersey number (30), and in return, Regina Foster and her 7-year-old autistic son, Reginald, got a down payment on their first house. Green wrote a check for $25,000, while Texans owner Bob McNair added another $25,000.”

The column acknowledges that young Reggie might not comprehend right away exactly what moving to his own home means. But when he sees the backyard, he’ll be happy — and that’s all that matters to Foster, who couldn’t afford a down-payment on her own.

The story was also featured in NFL News on espn.com. But with all this press, one thing ESPN didn’t mention was the Ahman Green Golf Shootout For Easter Seals. Green started the golf tournament while he was still playing for his former team, the Green Bay Packers. Green signed with the Houston Texans as a free agent in March, and according to a story on the Houston Texans official Web site:

“Green was particularly moved by Foster’s story, having worked with autistic children for the past few years in conjunction with the Easter Seals charitable organization.”

It wasn’t until after Green and Simmons delivered the down payment check to Regina Foster that she admitted she hadn’t really been a football fan before.

But now she’s rooting for Ahman Green. Me too!

Autism and baseball trades: what a relief!

by Beth Finke

The July 26 sports section of the St. Louis Post-Dispatch had a story about a possible baseball trade that – get this – has a human element to it.

In the story “Human element enters into any talks about dealing Springer,” Cardinals manager Tony La Russa is quoted as saying, “There will be a humanity to any Russ Springer deal.”

Russ Springer, a righthanded reliever, is 4-1 with a 2.92 earned-run average. He has held righthanded batters to a .165 batting average while striking out 45 hitters in 37 innings.

As tonight’s Major League Baseball non-waiver trade deadline approaches, the story reports Springer is one of the “most attractive pieces the Cardinals have to move.”

The issue? Russ Springer’s son has autism. One reason Springer signed a one year deal with the Cardinals in the first place was that the Springers prefer the school their son attends in the St. Louis area. Springer says he “came back here for more than the baseball; it was best for my family.”

I’m a Chicago fan, but I gotta say: GO CARDINALS!

The ADA: past, present, and future

by Patricia Wright

Last Thursday I attended the National Council on Disability (NCD) press conference marking the 17th anniversary of the passage of the Americans with Disability Act (ADA). As mentioned in a previous post, two important reports were released by the NCD examining the impact and scope of the ADA since its passage.

More information on these two reports can be found on the NCD Web site:

• The Impact of the Americans with Disabilities Act: Assessing the Progress Toward Achieving the Goals of the ADA
• Implementation of the Americans with Disabilities Act: Challenges, Best Practices, and New Opportunities for Success

Speakers included stakeholders from the business world, legal professionals, government entities, educational institutions, and individuals with disabilities. They discussed how the ADA has affected their lives and the challenges that still lay ahead. A central theme that arose from the press conference is that while we have made some progress in the four major goals of the ADA (equality of opportunity, full participation, independent living, and economic self-sufficiency); there are still significant strides to be made, especially in the areas of employment, transportation, health care, and education.

With the introduction of the ADA Restoration Act, a strong feeling of hope and optimism exists that the challenges facing Americans with disabilities will be met and addressed. The ADA Restoration Act will help individuals with disabilities focus on the discrimination they have experienced, rather than having to prove that they are “disabled enough” to fall into the intended scope of the ADA.

I encourage you to contact lawmakers and encourage them to cosponsor the ADA Restoration Act, thus enabling people with disabilities to be judged fairly on their own merits.

Delivering a message of hope

by Timothy Muri

Today’s What’s My Line? column in the Chicago Sun-Times features a story about Maurice Snell, Easter Seals’ 2007 National Adult Representative.

Maurice started attending our Easter Seals Metropolitan Chicago Autism Therapeutic Day School when he was six years old. As he says in the Sun-Times interview, Easter Seals helped him change his perspective. “When I first entered, I was crying. I did not want to talk. I was shy. But they helped me to dig deep into myself, come out of my shell to be the creative Maurice Snell that is here today.”

These days, Maurice is busy promoting Easter Seals Metropolitan Chicago’s Autism Therapeutic Day School. He described his speaking tour to the Sun-Times like this: “I go to different places across the United States and tell people the experience I had here and what (this organization) can do for those who are living with autism. So I’m here to deliver a message.”

How fortunate we are at Easter Seals to have Maurice Snell as our messenger.

To learn more about “the creative Maurice Snell that is here today,” be sure to watch his movie.

Read Timothy Muri’s biography