Pop culture and autism

by Patricia Wright

I am amazed at the recent volume of stories about autism in pop culture media. The demand for information and awareness regarding autism is significant; and it is reflected in the volume of pop culture venues that take autism on as a topic of interest.

There was Jenny McCarthy in People magazine, Oprah has dedicated shows to the topic and even Law and Order has included characters with autism in episodes. Popular media can certainly garner significant attention and raise awareness but I worry about some of the information that might be conveyed about autism via this venue.  

By nature, pop culture media includes opinions, personal beliefs and individual stories in both fictional and real contexts. For a parent, filtering all of this information and its applicability to their child must seem daunting.

Jenny McCarthy spoke eloquently about the intervention approaches she chose for her child. As a person with financial means, living in a major metropolis — this is the path she selected. 

On Oprah, families shared their personal experiences. One father even referenced a mainstream movie “my son was not like Rain Man” when he was describing coming to terms with his son’s diagnosis. The movie Rain Man is often cited as a reference point for autism. And indeed, most individuals with autism are “not like Rain Man.” 

Perhaps pop culture can work to raise awareness of autism but families need reputable sources that they can use to educate themselves about autism. Popular media usually tells a compelling personal story — but this story is by nature unique, and it is not applicable to the entire autism community.

Sources such as the Centers for Disease Control’s Autism Information Center and the Autism Society of America look at the big picture of autism. Information on these sites is meant to educate people about autism — not to showcase one compelling story about an individual with autism.

I applaud the efforts of pop culture and their desire to address the topic of autism. I would like to request that these stories include information and content from sources — such as the Autism Society of America and the Autism Information Center — so that parents who read these articles have a reliable source for information.

Easter Seals, autism and SCHIP

by Katy Beh Neas

A grandmother commented to last month’s blog about the expansion of SCHIP. She was concerned about her grandson – he has autism and needs dental insurance, but the family doesn’t qualify for the State Children’s Health Insurance Program (SCHIP).

SCHIP is a top legislative priority here at Easter Seals. We have been working to see that all children who are eligible for its coverage can be enrolled.

Nearly 4 million children are eligible, but can’t get the coverage because of funding limitations.

Last week, President Bush vetoed SCHIP legislation that Easter Seals supports. The bill that was sent to the President would make it easier for children to get health services, including dental services — the very thing the concerned grandmother who commented to our blog needs for her grandson with autism.

In addition, this bill would have allowed states to use SCHIP funds to enable a child to be enrolled in his/her parent’s insurance plan, making it easier for everyone because the family would only have to navigate one insurance plan’s rules.

There is still a chance that Congress can reverse the President’s veto and the improvements to SCHIP can become law. Take action — tell your senators and representatives to override the President’s veto of SCHIP.

When our national convention is held in Washington, D.C. next week, we will take our message to Capitol Hill. SCHIP must be strengthened and continued — our nation’s children deserve the right to be healthy.

Jenny McCarthy, louder than words

by Beth Finke

I was on vacation last week and during some long flights, I had time to think over some of the things I’d heard about Jenny McCarthy’s September 18 appearance on the Oprah Winfrey Show. McCarthy was on tour promoting Louder Than Words: A Mother’s Journey in Healing Autism.

During her Oprah appearance, McCarthy mentioned how her son Evan’s autism diagnosis had a negative affect on her marriage. The divorce rate among parents of children with disabilities is something I’ve blogged about in a previous post — “Divorce and disability: is it all a lie?” But one thing McCarthy said regarding her feelings after divorcing Evan’s father really stuck in my head.

When I got home from vacation, I looked the quote up.

“After the divorce, even though it felt good and the right thing to do, I felt, as I’m sure many mothers with children who have autism feel, ‘Who in the heck is going to love me with my child who has autism?’ I don’t care how big your boobs are or blonde your hair is — you’re going to feel that way.”

Now, that’s the sort of quote that sticks with you. Truth is – it’s sad.

What’s even sadder, though, is the fact most single moms with children who have autism or other disabilities don’t even think about being loved. They don’t have time. They’re too busy raising their children.

Easter Seals programs across the country provide a wide variety of interventions that help individuals of all abilities, including those with Autism Spectrum Disorder (ASD).

Our Web site lists the Easter Seals affiliates that provide services near you — give it a look.

Single moms – and all parents and caregivers – need all the support and services they can get when it comes to raising children with autism and other disabilities.

Wrap-up to a great year!

by Maurice Snell

First of all, I want to say that I have really enjoyed my year as Easter Seals’ 2007 National Adult Representative. Even though it might have been a demanding job, I truly enjoyed the opportunities that I endured for the past 11 months. Now, entering my 12th and final month of this prestigious honor, I know the next Youth and Adult Representatives will perform their services with honor and represent the Easter Seals organization in a great way.

As the 2007 Adult Representative, I was fortunate enough to travel to several different cities and states across the United States. I’ve traveled to places such as Puerto Rico (both San Juan and Ponce), New York (White Plains), San Francisco (twice), Las Vegas (twice), Dallas (three times), and cities in my home state of Illinois. A lot of people welcomed me and my family with open arms and we were blessed to meet the courteous people at many different Easter Seals affiliates and deliver my message to those individuals.

Maurice Snell and his band The Naturals performed Stevie Wonder’s ‘Living for the City’ at Brookfield Zoo during the September 15, 2007 Chicago Walk With Me event

I would like to wish the team at Easter Seals, Inc. the greatest of thanks for showing me the way – the in and outs while being the Adult Representative for this year.

I also thank those from many different Easter Seals affiliates for extending their invitation to me and my family to discuss my experiences with autism, the neurological disorder that has affected me most of my life.

I, in turn, am grateful to meet many people of Easter Seals, prestigious organizations such as Safeway, Quixtar, Food Lion, Century 21, and others, along with different families who aim to help a very common cause, such as autism.

The message has to be delivered to people across the country.

Without people like you supporting me through this period, I wouldn’t have gone anywhere.

As always, I will stay true to the Easter Seals organization, whether it is in Chicago or anywhere across this country. I look forward to telling the rest of my family, friends, and coworkers of the great year I have experienced.

I look forward to seeing you all again in the future!

Effective services requires financial support

by Patricia Wright

When a child is diagnosed with autism, parents do what they know best – pursue the most effective intervention services they can find for their child. This is what Joe and Elizabeth Micheletti did for their son Jake when he was diagnosed with autism two years ago. They found an effective intervention.

What they also found is that their medical insurance would not provide payment for the treatment. The Michelettis pursued this denial of coverage within the court system – and they won.

Coverage for autism intervention is a dilemma. The data demonstrates that intensive intervention at a very young age promotes the best outcomes.

Intensive intervention can be expensive; families need support to fund these services for their young children. Health insurance is often the first funding source pursued by parents. However, most insurance companies do not provide coverage for intensive early intervention.

The Michelettis pushed the health insurance system and received payment for Jake’s services.

Some states, like Texas and Pennsylvania, have legislated coverage for autism, but these states still do not provide full coverage for all of those in need. Unfortunately, there are many young children with autism who are still left without appropriate services.

Effective early intervention services grants the best opportunity for young children with autism to develop to their greatest potential. Insurance coverage, proper funding for state educational agencies and a societal commitment to providing appropriate services is what our young children need to achieve their potential.

Have disability, will travel

by Beth Finke

A quick note from your Easter Seals autism blog moderator – just want to let you know I’ll be away from the blog for a week. A friend is marrying a woman from Poland, and my husband and I are flying to Warsaw for the wedding.

I’m feeling less anxious about this trip than I have in previous ones — probably because this time we won’t have to find a caregiver for Gus while we’re away. Our son, Gus, was born with severe mental and physical disabilities. He is 21 now, uses a wheelchair to get around, and lives in a wonderful group home. When he still lived with us, he would either travel along on vacations or we’d find a babysitter qualified enough to take care of him.

I honestly can’t tell you which was the easier route.

Those of you with children who have autism or other disabilities know what it’s like to plan a family vacation – you take a deep breath, pack up all the prescriptions and medical equipment, cross your fingers and pray to the travel gods that nothing remarkable happens, and there are no “incidents.”

There can be wonderful rewards, of course: I’ll never forget our beach vacations, Gus sitting on the deck, hand held high up in the air, spreading his fingers to feel the ocean breeze.

Simple pleasures.

I am looking forward to enjoying my own simple pleasures during this trip to Poland and have been unusually casual about preparing for it. I am leaving my Seeing Eye dog with friends, and to be honest, without having to pack for Gus or Hanni, the trip seems like a cinch.

For a first-hand look at what it is like to travel with a disability, I highly recommend Bridget Houlihan’s Wheels with a View blog. Houlihan has a long history with Easter Seals — she spent her first summer at Easter Seals Colorado Rocky Mountain Village camp when she was 9 and ended up serving as a counselor there in her teens. Houlihan says the self-confidence she gained at camp, doing things that kids with disabilities weren’t supposed to do, is an important part of who she is today. 

Houlihan was born with cerebral palsy. Now in her mid-20s, she’s among the first generation of kids with disabilities to attend neighborhood schools and go on to college. She was among the first Rotary International Scholarship students with disabilities, studying for a master’s in media, which she received in August 2001.

Her blog is a journal of trips to New York City, Las Vegas and Wrigley Field rooftop decks – this woman has a sense of adventure!

As do I.

I’m looking forward to my week away. I’ll be leaving you in the VERY capable hands of Danny Yuen, a Technology Opportunities Program (TOP) intern here at Easter Seals Headquarters.

More on the TOP grant in a future blog. For now, I’m off to O’Hare.

Brothers and sisters of autism

by Beth Finke

A story in this month’s issue of Vanity Fair reports how famous playwright Arthur Miller had his son Daniel, born with Down syndrome, placed in a “home for infants” in New York City.

Miller was concerned about what his daughter Rebecca’s life would be like if she grew up with a brother who had a disability. In the article, a friend recalls Daniel’s mother saying Miller felt it would be “very hard for Rebecca, and for the household to raise Daniel at home.”

Another friend remembers “it was a decision that had Rebecca at the center.”

There weren’t many support services for siblings of children with disabilities back in 1966, when Daniel Miller was born.

Thank goodness things have changed.

The brothers and sisters of children who have autism or other disabilities are a special lot. Easter Seals’ services offer help and hope to children and adults living with autism and other disabilities, and to the families who love them.

This includes siblings.

Through my work at Easter Seals, I’ve also learned about another resource for siblings: the Sibling Support Project offers support to the brothers and sisters of people with special health, mental health, and developmental needs. The Sibling Support Project sponsors the Internet’s first and largest listserv for people who have brothers or sisters with autism, or other disabilities.

Today, with more support services for siblings, the brothers and sisters of children with disabilities can take advantage of an opportunity Rebecca Miller missed out on.

Business gets hip to expansion of SCHIP

by Beth Finke

Those of us who have children with autism or other disabilities have an ongoing concern about the cost of health care and the availability of health insurance. Apparently, we aren’t the only ones.

Last week, an American Public Media radio show called Marketplace aired a story about the State Children’s Health Insurance Program (SCHIP) that surprised me. The story, titled “Children’s med plan has healthy support,” said the business community endorses the expansion of SCHIP.

Congress created SCHIP in 1997. SCHIP allows the states, with support from the federal government, to design insurance programs for children of working families. These families earn too much to qualify for Medicaid, but not enough to buy health care insurance on their own.

The House and Senate have approved different versions of legislation to continue SCHIP. The program is set to end this Friday, September 30, 2007.

Congressional negotiators have been working to sort out the differences in those two bills.

In recent days, there have been positive signs that a deal may be at hand. It is likely the
House will schedule a vote today, Tuesday, September 25 and the Senate on Wednesday, September 26.

Easter Seals has been working for decades to ensure that all children live healthy, happy and productive lives.

One sure way to help make this happen is to promote access to health insurance coverage for all children. To that end, Easter Seals supports the expansion of SCHIP.

And according to the Market Place story I heard, the business community supports it too. If the SCHIP program is expanded, businesses can hire more people without having to worry about paying high health care claims for the children of these workers.

You can listen to a rebroadcast of the story at the Marketplace Web site. While you’re there, check out the “Idea Generator” — Marketplace is looking for your ideas about making health care more accessible and affordable in the United States.

Stories of hope

by Patricia Wright

My desire to provide service to individuals with autism and their families stems from my desire to see positive outcomes for those whom I am providing this service.

I tell people that I am a teacher of students with autism. But when I tell stories about my work, I describe the success of my students — not of my teaching. I talk about the job that Duke held, the friends that Joe made and the prom that Julia attended. 

Hopefully, my role as an educator in these students’ lives promoted some of the positive outcomes.

Stories of Hope sheds a glimpse into this world of success. Take a few minutes to read about individuals with autism who have reached higher – and the support network that has allowed them to achieve their goals. 

Employment, autism and the ADA Restoration Act

by Beth Finke

All the blog comments we’re receiving about health coverage and employment for people with autism prompts me to write again about the importance of restoring the Americans with Disabilities Act.

A National Council on Disability (NCD) report called “Righting the ADA” shows that when it comes to employment discrimination against people with disabilities, the majority of the Supreme Court’s rulings favor business owners.

The Americans with Disabilities Act (ADA) is all about eliminating discrimination against individuals with disabilities. But as NCD Chairperson John R. Vaughn says, “While the provisions of the ADA addressing architectural, transportation, and communication accessibility have been implemented with notable success, the employment provisions of the ADA essentially have been rewritten by the Supreme Court.”

In other words, the ADA is not providing the opportunities and protections the people who helped create and pass it back in 1990 had in mind.

Patricia Wright, the National Director of Autism Services at Easter Seals, posted a blog about the NCD’s press conference marking the 17th anniversary of the passage of the Americans with Disabilities Act.

Two reports released at the press conference, “Implementation of the Americans with Disabilities Act: Challenges, Best Practices, and New Opportunities for Success,” and “The Impact of the Americans with Disabilities Act: Assessing the Progress Toward Achieving the Goals of the ADA” confirm that legislation is urgently needed to restore the ADA.

ADA restoration bills were introduced in the House (H.R. 3195) and the Senate (S.1881) on July 26, 2007.

Katy Beh Neas, Senior Director, Federal and State Government Relations for Easter Seals, posted the “Are people with autism ‘disabled enough’ for the ADA?” blog in order to provide links to locate your local representatives and check if they are co-sponsoring the bill.

The American Association of People with Disabilities (AAPD) has an ADA Restoration blog, and one post this week includes the names of the newest co-sponsors in the House. If your representatives are not co-sponsoring the bill yet, you can visit their Web sites for contact information and urge them to support the ADA Restoration Act of 2007.

Let’s do what we can to ensure economic self-sufficiency for Americans with autism and other disabilities.