Thanking Newsweek for providing a voice for people with autism

by Patricia Wright

Before heading off for a three-day weekend last week, I wrote a letter to the editor at Newsweek thanking the magazine for publishing Claudia Kalb’s article, Erasing Autism. The article featured 21-year-old Ari Ne’eman. Ne’eman has Asperger syndrome, and he founded the Autistic Self-Advocacy Network (ASAN) — a nonprofit organization run by and for people with autism.

He certainly puts up a fight. Ne’eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to
live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. “We’re having a national conversation about autism without the voices of people who should be at the center of that conversation,” he says.

Quality of life should be the message regarding autism. Quality of life can be measured by the ability to make choices — choices about where to work, where to live, how to recreate and with whom to spend time. Given appropriate services and supports, every person with autism can contribute to their life choices.

Quality choice-making requires that the individual with autism be involved. Every individual with autism must be afforded the dignity of making their life choices; individuals with autism must be at the table if their voice is to be heard. The social service community and society at-large must change to ensure that decisions are not being made for individuals with autism, but instead are being made with individuals with autism.

Mr. Ne’eman states his feelings on this subject eloquently and strongly — I wrote that letter to Newsweek’s editor to thank them for providing a voice for individuals with autism.

Safeway earns Easter Seals’ All-Time Top Corporate Partner designation

by Beth Finke

Easter Seals recently designated Safeway Inc. its All-Time Top Corporate Partner. Man oh man, do they deserve that honor!

In their fundraising campaign during April (Autism Awareness Month), Safeway invited customers to support Easter Seals services for people with autism and other disabilities at checkout. In just one month, Safeway raised $8,824,141! Safeway employees also raised an additional $1.4 million through local market events, golf tournaments, galas and fundraisers—bringing the company’s 2009 grand total for Easter Seals services to $10.2 million.

And here’s the cool thing –Safeway puts its money where its mouth is. Safeway employs more than 10,000 adults with disabilities. You read that right. They hire more than 10,000 adults with disabilities. There are over 1,700 Safeway stores across the United States and Canada, operating under various brand names including Safeway (East Coast, Seattle, Portland, Northern California, Phoenix and Denver), Vons and Pavilions (Southern California and Nevada), Dominick’s (Chicago), Randalls and Tom Thumb (Texas), Genuardi’s (Philadelphia) and Carrs stores (Alaska). Look around the next time you are shopping at one of these stores – it’s likely you’ll find an employee there with a disability. What a welcome sight!

I can tell you firsthand — when you have a disability, it is extremely difficult to convince employers to hire you. Safeway’s commitment gives many adults with autism and other disabilities a career and a means to live independently. Larree Renda, Safeway Executive Vice President and Chair of the Safeway Foundation, says it best: “Most important, is the message that people with autism and other disabilities are valuable members of the workforce—even in these tough economic times. Too many businesses don’t take the risk in hiring people with disabilities. At Safeway we’ve embraced it, and have had great success.”

THANK YOU Safeway!

Keeping autism and other disability services a top priority

by Beth Finke

During his first months in office, President Obama has already signed the State Children’s Health Insurance bill (a top priority for Easter Seals) and designated funds in the economic stimulus package to go directly to programs that improve the lives of those with autism and other disabilities.

Easter Seals President and CEO Jim Williams visited the White House recently to personally thank President Obama for all that he’s done for people living with autism and other disabilities. While he was there, he also urged the president to keep the needs of individuals living with autism and other disabilities a top priority in health care reform.

Millions of people live with a disability and that number increases every single day. Easter Seals works hard to reach as many people as we can, but our efforts alone are not enough to help every person in need of disability services. This is why Jim Williams urged President Obama to keep the needs of individuals living with autism and other disabilities a top priority in health care reform.

You can contact the White House, too — click here to thank President Obama for his work
and to ask him to continue to prioritize the needs of the millions of people who live with autism and other disabilities.

Data on autism and divorce

by Beth Finke

I’m well aware that when Jenny McCarthy made an appearance on an Oprah Show about autism, she said that the divorce rate among couples who have a child with autism is 90%. And I still remember reading the post Patricia Wright published here about Sen. John McCain’s (R-AZ) autism statement during the presidential election. In that statement, McCain said “divorce rates of parents of children with autism are well above the national averages.”

But until I read a Detroit Free Press article about autism, I had no idea that Dr. Colleen Allen, director of the Henry Ford Center for Autism and Developmental Disabilities is also using a high number when talking about the divorce rate among couples who have a child with autism. From the article :

More often than not, it rips apart marriages. Eighty-six percent of the marriages with an autistic child end in divorce, according to Allen.

Data from the Easter Seals’ Living with Autism Study provided us with quantifiable information that families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one third said their divorce had anything to do with managing the special needs of their children.

I was glad to see a O Solo Mama blog post questioning Dr. Allen’s 86% statistic, but I was disappointed O Solo Mama thought there was nowhere to find real data on this issue.

Many people have searched for it and have come up empty.

Of course I will be commenting to that post to give them the good news: their search is over. They can come to Easter Seals for the information they’re looking for!

A blog called Monterey Bay Forum found us, and that makes me happy. Their post about the Easter Seals Living with Autism Study starts out by suggesting that some of our findings were obvious:

Many of the findings aren’t exactly shocking, such as the fact that parents of the special needs children were highly concerned with their child’s independence and quality of life, and that they struggled financially and had concerns about their children’s education.

But it credits our study for providing data that was not available before:

And the rate? 30% for families with autistic children, 39% for the control group without special needs.

The Monterey Bay Forum post encouraged readers to download the Easter Seals Living with Autism Study to see the results for themselves.

Montana 10th state to sign autism insurance bill into law

by Katy Beh Neas

Montana just became the tenth state in the country to pass autism insurance legislation that requires insurance companies to pay for treatment for children with autism. Easter Seals Goodwill Northern Rocky Mountain was intimately involved in passage of the bill.

Known as “Brandon’s Bill,” the legislation was signed last Tuesday, May 5th. In attendance at the signing ceremony were Laura Simonson with her son Brandon, a five-year-old with autism, and Shelley Oksness, senior vice president of program development for Easter Seals Goodwill Northern Rocky Mountain. Brandon received P.L.A.Y. therapy from Easter Seals Goodwill Northern Rocky Mountain.

Easter Seals Goodwill Northern Rocky Mountain worked with legislators, coalition partners like Autism Speaks and the Autism Society of America, parents and supporters. What began as a grassroots campaign of parents and providers ended as a new law. Governor Brian Schweitzer talked about his personal connection to the bill, raising a child with autism himself.

The new law requires that insurance companies cover up to $50,000 per year in coverage for children up to 9 years old, and up to $20,000 per year for services for children 9 through 18 years old.

Think high school years are challenging? Try going through them with Asperger Syndrome

by Patricia Wright

Many individuals with Asperger Syndrome report that high school years are particularly challenging. Self advocacy is especially important as these children grow into adulthood.

The Global and Regional Asperger Syndrome Partnership (GRASP) is an organization led and governed by individuals with Asperger Syndrome. From their web site:

What makes GRASP unique, other than its proven four year-old support group network, its educational outreach, and its use as an informational clearinghouse on issues relating to the autism spectrum, are the stipulations GRASP must adhere to in accordance with our bylaws — that the Executive Director, 100% of the Advisory Board, and 50% of the Board of Directors of GRASP must be diagnosed with either Autism, Asperger Syndrome, or Pervasive Developmental Disorder.

Connecting with others for peer support during the high school years can be helpful, and the resources on the GRASP website allow people with Asperger Syndrome to see how others have accessed support to meet their needs.

Parenting a high schooler with Asperger Syndrome can be challenging, too. But just like any other parent, those with children who have Asperger Syndrome dream of their children growing into confident young adults. The Online Asperger Syndrome Information and Support (OASIS) is a wonderful website, full of resources specifically addressing the needs of individuals with Asperger Syndrome. Many resources on this site offer additional ideas on how parents can support their teenage children with Asperger Syndrome.

Mother’s Day for special moms

by Beth Finke

For years after our son Gus was born, I begged my husband Mike not to get me a gift for Mother’s Day. “I’m not your mother!” I told him.

Our son Gus has severe mental and physical disabilities — he doesn’t understand what Mother’s Day is. Gus wouldn’t be making me a card. He wouldn’t be presenting me with dandelions picked especially for me. I knew that. But I was determined not to let any of that bother me. I knew I was a good mother, and I knew my son loved me in his own special way.

And then one year – Gus must have been 5 or 6 — I burst into tears on Mother’s Day. “I’ll never get to celebrate like all the other mothers do!” I wailed. Poor Mike didn’t know what to do.

This article on parental grief and adjustment to a child with disabilities reassures me I am not alone when it comes to feeling a bit of sadness on Mother’s Day. The article lists Mother’s Day as one of the “common occasions of stress for families of a child with a disability.”

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day. This Saturday we’re heading to Wisconsin to visit our grown son in his group home. We’re proud of Gus. I’m proud to be his mom and happy to celebrate as a family. Gus’ dad and I plan on spending Saturday night in a nice hotel. Sunday morning? We’ll order room service, and I’ll celebrate like so many other moms do — enjoying breakfast in bed!

I’d love to hear how other special moms have come to terms with Mother’s Day and how other families with special children celebrate each year.

Law enforcement and autism: a need for two communities to work together

by Patricia Wright

The prevalence of autism has increased dramatically. With as many as one in 150 individuals in the Unites States experiencing autism, it’s likely that law enforcement professionals will encounter an individual with autism. Effective training is needed for both the law enforcement professionals and for individuals with autism to ensure that these encounters do not escalate into unnecessary violence.

The media is full of stories of individuals with autism and violent encounters with the police. In my hometown of Chicago a story was reported recently. This story is replete with training needs on both sides. The police officers were not able to identify signs of autism, and the young man with autism was unable to interact successfully with the police. Clearly there is opportunity for improvement.

There are several programs that have been developed to increase autism awareness for law enforcement. The Autism Society of America has a free resource for law enforcement (PDF). Dennis Debbaudt is a leading expert in law enforcement training and has dedicated his career to promoting safety for individuals with autism. Debbaudt’s website is ripe with resources for first responders.

Educators and parents must also take on the responsibility of supporting individuals with autism to develop the skills necessary to interact with law enforcement. Individuals with autism typically require direct instruction to learn new skills. Throughout childhood and youth, individuals with autism must be taught the skills of interacting with law enforcement professionals (e.g. not running away from them, keeping hands out of pockets). Debbaudt has a great resource to help guide this learning process (PDF).

I would like to think that people who choose law enforcement as a career do so because they are dedicated to keeping our communities safe. I also believe that individuals with autism can learn skills that allow them to successfully engage in community life. Training is needed, for both the law enforcement and autism communities.

Hizzonor, Maurice Snell

by Maurice Snell

In all the excitement of meeting White Sox players last week, and going to that White Sox game, I forgot to mention one very important thing in my post about Autism Awareness Month.

Chicago Mayor Richard M. Daley came to Easter Seals Metropolitan Chicago on April 23! The mayor held a press conference about job opportunities for individuals living with disabilities. The goal is to possibly create more programs in the Chicago area that will feature continuing work for many different clients.

Even though the Therapeutic School and Center for Autism Research currently has the Adult Vocational Program, there are still more faces out there that need more in their life. I just want to add that it was a good pleasure of meeting Mayor Daley once again.

PS: Unfortunately, I did not ask the mayor how Chicago is doing on our Olympic Bid. I was afraid that I may be the scapegoat of destroying our chances (LOL).

Maurice: Autism Awareness Month redux

by Maurice Snell

April has been a great month! Many organizations helped celebrate Autism Awareness month nationwide, including our very own Easter Seals.

I have been busy myself, going around and out of town meeting new faces and telling my life story. It all started with a trip to Great Falls to meet a group of people who were hosting Autism Awareness Week at Easter Seals-Goodwill Northern Rocky Mountain. It was the first time I’ve been to Montana and it’s a great state to visit!

Back home in Chicago, Easter Seals Metropolitan Chicago celebrated Autism Awareness Month in great fashion. This past Monday, the Therapeutic School and Center for Autism Research hosted a balloon release event with help from White Sox manager Ozzie Guillen, third baseman Josh Fields and pitcher Matt Thornton. Southpaw, the team mascot, was there, too. Even though most of the day was windy and grey, all of the students at the school helped released the different balloons into the overcast sky. After the event, Ozzie and the players took a tour of the Therapeutic School, visiting different classrooms and all of the interesting places within the school.

Later that evening, all the folks from Easter Seals Metropolitan Chicago were supposed to participate in Autism Awareness Night at the White Sox game. Terry Bracey — a graduate of the Therapeutic School and a member of my band The Naturals — was supposed to sing the National Anthem for that game, but the game was called due to rain. We had a lucky break — all of the festivities were pushed back to Game 1 of a double header the very next day, and Terry got the chance to sing the National Anthem after all. Even though I may not have been inside the ballpark (I was one of the thousand fans waiting in line to exchange tickets), I was fortunate enough to listen to Terry over the public address.

It was a good day for baseball (for the first game of the double header, at least — the White Sox won that one!) and an exciting end to an exciting month of April. We look forward to May and hope it’s a great month also!