A special interest in weaving

Posted by Beth Finke on October 26th, 2009

This month Patricia Wright, Easter Seals National Director of Autism Services, wrote two posts about careers for adults who have autism. The first one was about an IT firm that goes out of its way to hire individuals with autism who have a special interest in internet technology. The second post was about a business professor with autism who says his special interest in consumer behavior contributes to his professional success. In both posts, Dr. Wright warned against assuming people with autism all have the same special interest.

After these posts were published, I received a note about an interview with artist Gary Rosenthal. In the interview, Rosenthal discusses a new line of woven Judaica he is producing with the help of two workers who have autism. The artist says:

I like to say that all of my staff/associates do what they do better than I would do. Nowhere is this clearer than with my autistic associates. Everyone is different, but John and Tim love to work on repetitive tasks where precision is critical. Weaving is a favorite task and the more the better.

Rosenthal says that the success of the mezuzahs have motivated him to create more woven items and hire more staffers who have autism. I think that’s great! Just hope he’s read Patricia Wright’s posts here and knows that not all people with autism are precise and like repetition the way his workers John and Tim Do.

A terrific Capitol Hill Day!

Posted by Bob Glowacki on October 22nd, 2009

What a terrific Capitol Hill Day we had in Washington D.C.!

We started the day off with a tour of the White House. About 200 Easter Seals staff and volunteers got to take advantage of this rare opportunity!

Then we met with members of Congress for our home state of Wisconsin — Senators Kohl and Feingold, and Representatives Kagen, Sensenbrenner and Moore. We had a half-hour with Sen. Kohl discussing health care and long term care. We were pleased to find all the members we met with agreed with ending pre-existing conditions as a major policy goal for people living with disabilities. Each office told us they agree on 80% of the issues involved. Rep. Kagen is a doctor and is following this issue closely. We even got a fist bump from him for the work done at Easter Seals!

As an organization, we were pleased to hear the praise from all our visits about the work done by Easter Seals. This year, Easter Seals Southeast Wisconsin is investing $100,000 to start to a new Applied Behavioral Analysis (ABA) program for children with disabilities. Annually, we raise over $100,000 to cover shortfalls in our Birth-to-4 program. Each person we met with knew Easter Seals is a vital piece of the network in providing community supports for children and adults with disabilities.

But one day of staff and volunteers in D.C. is not going to get the job done. One office told us the people back home need to weigh in.

It’s not too late to keep calling, mailing and emailing your thoughts. It helps in guiding policy and letting members know what people back home are thinking. There are concerns within any of the current bills that can affect those living with disabilities, their care and their supports. Many people living with disabilities have long term health conditions and will be impacted directly by the changes in our health care system.

So … stay tuned and stay involved!

Help us take our health care message to Capitol Hill tomorrow

Posted by Katy Beh Neas on October 19th, 2009

Hundreds of Easter Seals volunteers and clients are heading to Capitol Hill tomorrow to tell Congress that health care can’t ignore families living with disabilities. Our message is clear: families with disabilities should have affordable health care that provides the services they need, when they need them.

We’ll be visiting our legislators and asking them to support health care legislation that includes:

• Coverage for pre-existing conditions, guaranteed coverage renewal, and no annual or lifetime caps.
• Benefits like rehabilitative and habilitative services, medical equipment and devices, and mental health services.
• Affordability provisions, so that all people, including those with disabilities, can receive the health care they need to live, learn, work, and play in their communities.

Send a message to Congress voicing your support, and help reinforce Easter Seals’ message as we head to Capitol Hill to meet with legislators.

And make sure you get our updates during our Capitol Hill Day! Join us on Facebook and Twitter. And if you’re already on Twitter, help us spread the word by tweeting about Easter Seals Capitol Hill Day by using the #CapHill09 hashtag.

Together, I know we can make our message to Congress heard loud and clear!

Dr. Lars Perner’s personal perspective on “special interests”

Posted by Patricia Wright on October 16th, 2009

In my blog post yestrday, I talked about a Danish entrepreneur who used a great business strategy. He found an area of special interest, and employs people with autism who have that special interest.

I warned against assuming people with autism all have the same special interest. A good example: Lars Perner.

Dr. Perner is an assistant professor of clinical marketing at University of Southern California’s Marshall School of Business. He also happens to be a person with autism. Perner keeps a personal blog called Delightful Reflections, and often shares that his special interest in consumer behavior has contributed to his professional success.

Dr. Perner has a free audio lecture too. You might want to check it out — we can all learn a lot more about “special interests” by getting a personal perspective from an expert: an individual with autism.

Putting “special interests” to work

Posted by Patricia Wright on October 15th, 2009

A story in Wired Magazine explains how the news of his son’s autism diagnosis inspired Danish entrepreneur Thorkil Sonne to start Specialisterne (Danish for “Specialists”), an I.T. firm that hires mostly people with autism spectrum disorders (ASD).

One characteristic we often hear about people with autism is an intense interest in a particular subject. Colloquially in the field of autism this is called a “special interest,” and Specialisterne hires individuals with autism who have a special interest in internet technology.

In Sonne’s native Denmark, as elsewhere, autistics are typically considered unemployable. But Sonne worked in I.T., a field more suited to people with autism and related conditions like Asperger’s syndrome.

“As a general view, they have excellent memory and strong attention to detail. They are persistent and good at following structures and routines,” Sonne says. In other words, they’re born software engineers.

Too often I hear people say things like, “People with autism are really good at (name a topic).” CAREFUL! I think people with autism are really good at something that interests them, at a particular time, and in a particular environment. Kind of like the rest of us!

Take me, for example. I’m good at cooking, in the evening, in my kitchen. In the morning, it’s a bowl of cereal. In an unfamiliar kitchen, I’m a little shaky. Each person with autism is an individual, and their interests emerge in particular environments in a particular time frame.

It’s fantastic when anyone’s interest intersects with a vocation, and if you are a person with autism who loves Information Technology, Specialisterne may want to hire you. Mr. Sonne used a great business strategy: find an area of special interest, and employ people with autism who have that special interest. Given the vast number of adults with autism who have difficulty securing employment, it would be great of other business leaders took on this model with their own area of special interest.

“The Story” on Disability Employment Awareness Month

Posted by Beth Finke on October 13th, 2009

It’s Disability Employment Awareness Month, and An NPR show called The Story contacted me last week to record an interview. If you’ve never heard The Story, here’s a description of the show from their Web site:

At a time when “celebrity rules” and the only “ordinary” people we see are faces in the crowd, The Story reminds listeners that their stories and their lives matter. We believe that by creating a space for first person stories we are choosing not to accept a pollster’s version of our thoughts and attitudes.

The Story originates on North Carolina Public Radio, so Dick Gordon, the show’s host, was in Chapel Hill during Friday’s interview. Me? I sat alone with my Seeing Eye dog Hanni in a recording booth in Evanston, Illinois. The sound man, seated in another room behind a plate of glass, says if you listen carefully you’ll hear Hanni’s harness jiggle as she settles in at the beginning of the taping. She slept for the rest of the hour. She’d heard this all before.

The interview questions centered on my working life. I lost my sight in 1985. The Americans with Disabilities Act wouldn’t be signed into law until five years later. When I lost my sight, I lost my job. Worse than that, I lost my self-confidence. It took a while for me to get the gumption to apply for work again, but once I did I met up with some pretty wonderful, flexible employers. A series of part-time jobs helped rebuild my confidence back. Today I’m a published author, a teacher, and … a blog moderator!

If you read my blog post about a speech Sen. Richard Durbin (D-IL), gave on hiring people with autism and other disabilities, you know he mentioned a recent DePaul University study on the costs and benefits of employing people with disabilities. Durbin used the study to remind his audience that people with autism and other disabilities make very loyal employees.

This is what the study found: on their annual performance reviews, employees with disabilities rated slightly higher than their co-workers without disabilities. Employees with disabilities took fewer scheduled and unscheduled days off work — just the opposite of what many might assume.

In addition, the average cost of accommodating the workers with disabilities — modifying the workplace to meet their needs — was $313. As investments in good, dependable workers go, that’s a bargain.

I wasn’t savvy enough to refer to research studies when they taped my interview for The Story, but I hope the spirit of that study shines through when the show airs. The Story is distributed nationally by American Public Media. It can be heard in North Carolina on WUNC-FM and WRQM-FM (90.9) in Rocky Mount. The show can also be heard on other stations across the U.S. including WBEZ in Chicago and KPCC in Los Angeles. I’m not sure yet when my particular segment will air, so stay tuned — I’ll let you know as soon as I find out.

In the meantime, take a look at a post called Disability Employment Awareness in the News on the Justice for All Activist Blog. The post has a nice round-up of articles about disability employment awareness that have already been published this month.

Study could prove whether human-animal interactions help with autism

Posted by Beth Finke on October 9th, 2009

A New York Times article this week reports that the Eunice Kennedy Shriver National Institute of Child Health and Human Development will study the health benefits animals can provide to children. The article opens with a description of a yellow Labrador retriever who has been paired-up with an 11-year-old boy who has autism.

“Within, I would say, a week, I noticed enormous changes,” Ms. Vaccaro said of (her son) Milo, whose autism impairs his ability to communicate and form social bonds. “More and more changes have happened over the months as their bond has grown. He’s much calmer. He can concentrate for much longer periods of time. It’s almost like a cloud has lifted.”

Dr. Melissa A. Nishawala, clinical director of the autism spectrum service at the Child Study Center at New York University, said she saw “a prominent and noticeable change” in Milo, even though the dog sat quietly in the room. “He started to give me narratives in a way he never did,” she said, adding that most of them were about the dog.

The changes have been so profound that Ms. Vaccaro and Dr. Nishawala are starting to talk about weaning Milo from some of his medication.

We’ve all heard stories about dogs and other animals — whether service and therapy animals or family pets — helping their human companions feel better. Who knows? Maybe someday we’ll have scientific evidence that shows just how much interacting with animals affects typical development and health, and whether human-animal interactions have therapeutic and public-health benefits.

NJ law keeps autism on legislators’ minds

Posted by Kathy Patrick on October 7th, 2009

On August 13, 2009, New Jersey became the 15th state to enact a law requiring many insurance companies to cover the screening and therapeutic treatment for children up to age 21 who are diagnosed with autism and other developmental disabilities.

The law is scheduled to take effect in February, 2010. Under the legislation, insurance companies will be required to provide up to $36,000 a year for medically-necessary behavioral early intervention for all patients with autism, and with other developmental disabilities, who are under 21 years of age. New Jersey health insurers would provide diagnostic coverage for screening for autism and other developmental disabilities.

The mandate also includes therapeutic services, including any medically-necessary occupational, physical and speech therapy. The law provides up to $36,000 a year, per child, for behavioral, speech, and occupational therapy. Of 15 states with similar requirements, New Jersey is the first to include coverage for other developmental disabilities, too.

This new legislation has autism on people’s minds. I recently attended a political rally where I felt like I was at an autism advocacy rally! A lot of people were talking about autism. I heard more talk about autism at that rally than I have ever heard at a non-autism event. The speakers, the folks at my table (whom I had just met), municipal officials, school board officials, state and county officials, the candidates … everyone was talking about the importance of New Jersey making the diagnosis and treatment of autism spectrum disorders a top priority.

That rally was one of those rare times when I witnessed my professional and personal values mesh with my vision — governing leaders were ensuring that all people are included, and that supports are provided to achieve that goal.

New prevalence = increased demand for services and supports

Posted by Patricia Wright on October 6th, 2009

There has been a rumor for several months that the prevalence rate for autism was going to show an increase. Yesterday those rumors were confirmed.

A publication in Pediatrics indicates that 1 in 91 children between the ages of 3 and 17 has an autism spectrum disorder. The story in Pediatrics came out of a report from the National Survey of Children’s Health, and it indicates a clear increase from the 2007 research that found as many as 1 in 150 children had an autism spectrum disorder.

The news of this increase has many people asking why. As for me, I am asking what. What will we do to meet the increased need for services? What will we do to meet the increased need for supports?

Surveillance studies are important. They inform our society about what is happening to our population, and they should inform our society about the needs of our society members. Every day Easter Seals hears from parents who are not able to access services and supports for their children. The two barriers I hear about most often from families are financial barriers and the lack of trained professionals in their communities.

Individuals with autism can and do lead meaningful lives with effective services and supports. Increased prevalence equals increased need. The research has been done. We know that there are more children with autism. This must lead to the logical conclusion that there are more children in need of services and supports.

Remove the barriers to effective services and supports. Our professionals (teachers, childcare workers and therapists) need access to training. Our families need financial support to ensure their children receive quality treatment. Our society funded the prevalence study to find out about how many children have autism. Let us now fund services and supports to meet the needs of those we found.

Book Review: Clarissa Willis’ My Child Has Autism

Posted by Beth Finke on September 30th, 2009

Hearing a child has autism can be devastating for parents. After a child is diagnosed with autism, the parents are left facing something entirely new and unknown, which can be awfully scary. My Child Has Autism: What Parents Need to Know by Clarissa Willis, Ph.D., is a great introduction to the jargon of autism.

The book begins with an explanation of what autism is, and what it is not. From there the author explains the diagnostic process and autism treatments. My favorite chapter is the one that answers common questions asked by parents of children with autism. Terms, references and resources are found at the end of every chapter, which helps parents key in on issues one at a time.

I can’t say that this book will take away all the fears and worries parents will have about their newly-diagnosed child, but it sure will help parents know what questions to ask when working with doctors and therapists.