Labor Day, autism and unemployment

A Wall Street Journal article (subscription only) this summer, titled “Erasing ‘Un’ From ‘Unemployable’ “, opens with a story about Harrison Mullinax, an 18-year-old in Anderson, SC who has autism.

“Unlike most who are autistic,” the article reads, “he now has a real job.”

The article goes on to talk about efforts to enable those with disabilities to hold regular jobs.

I am one of those people.

I am blind. I use a talking computer to do this “regular” job. As far as I know, I am the only blind woman in America being paid to moderate a blog.

The simple fact that I am employed at all puts me in a minority. A story in the New Standard titled “Unemployment, Poverty Higher for People with Disabilities” says only 38 percent of nearly 21.5 million people with disabilities between the ages of 21 and 64, or what is determined as “working-age,” are employed in the United States. That figure compares to just over 78 percent of people without disabilities.

Monday is Labor Day, and I’m celebrating Easter Seals’ efforts to make “real jobs” a reality for people with autism and other disabilities. Easter Seals provides job development and employment services in many geographic regions.

And Easter Seals is not alone. Other organizations are working to erase the “un” from “unemployable” when it comes to people with autism and other disabilities. APSE (formerly the Association for Persons in Supported Employment) is another resource. APSE and the Autism Society of America recently partnered to present a conference focusing on the employment needs of people with autism.

Also worth noting: the U.S. Business Leadership Network’s 10th Annual Conference, “Building the New Workforce — Inclusion and Innovation” is set for September 23 to 26 in Orlando. The national event is intended for business, community leaders and Business Leadership Network chapters that have an interest in hiring, retention and marketing to people with disabilities.

Don’t get me wrong — I’ll enjoy my day off! But like many people with disabilities, I look forward to getting back to work, too.

Happy Labor Day!


Are people with autism “disabled enough” for the ADA?

An article on the Americans with Disabilities Act (ADA) at points out the confusion about who is “disabled enough” to qualify for ADA rights and why the ADA needs restoration.

The article reports millions of citizens have been left vulnerable to a narrow interpretation of the law, and that people with other disorders and disabilities such as autism, epilepsy, muscular dystrophy and those who use hearing aids may not be “disabled enough” to be protected under the ADA.

“The Supreme Court’s interpretation has created a vicious circle for Americans with disabilities,” said Congressman Jim Sensenbrenner (R – WI), cosponsor of the ADA Restoration Act of 2007. “It has created a broad range of people who benefit from ‘mitigating measures’ such as improvements in medicine, who still experience discrimination from employers, yet have been labeled ‘not disabled enough’ to gain the protections of the ADA. This is unacceptable.”

Easter Seals is encouraging lawmakers to pass the ADA Restoration Act, which will help restore the basic rights of people with disabilities.

At last count, 181 members of the House of Representatives had cosponsored the ADA Restoration Act, just shy of the 218 needed for a majority vote.

Although members of Congress are on recess, they will be back on Capitol Hill next week. But you can contact them now!

Locate your local representative and check to see if that representative is a co-sponsor. Then, find out who your senators are and see if your senators are cosponsors too.

Visit their websites for contact information to local offices, and then call, fax, email, or SHOW UP at their door.

If your representatives are among the cosponsors, thank them. If they are not cosponsors yet, urge them to support the ADA Restoration Act of 2007.


A global issue, without boundaries

Autism does not have geographic boundaries –- the growing autism prevalence rate is of world-wide concern.

I am currently in Los Angeles waiting for my flight to Hong Kong where the Asian Autism Conference is being held this weekend. Hundreds of parents, care-providers and professionals will converge to learn how to meet the growing need for services and supports.

Although Easter Seals provides service primarily in the United States, we do have an affiliation with Ability First in Australia and a strong belief that all individuals with disabilities deserve the right to quality services and supports — regardless of political boundaries.

I am also happy to join and support our colleague Lee Grossman, president of the Autism Society of America, who will be providing a presentation at the Conference.

Autism is a global issue. I look forward to spending my weekend hearing about the unique tools and strategies being used in Asia. Through advocacy, education and global collaboration, the needs of individuals with autism can be addressed.


Book review: Joanne Cafiero’s “Meaningful Exchanges for People with Autism”

Read more about Meaningful Exchanges for People with Autism at Amazon.Meaningful Exchanges for People with Autism: An Introduction to Augmentative and Alternative Communication, by Joanne Cafiero, Ph.D., is an excellent resource for AAC (Augmentative and Alternative Communication) intervention for people with autism. The content is provided in a user-friendly format which includes qualitative stories, quantitative data and pictorial representations. This book would be particularly helpful to those new to the field of AAC or new to the delivery of AAC service and support to individuals with autism.

Approximately 50% of individuals with autism do not develop effective spoken language according to research published in the 2001 book, Educating Children with Autism.

AAC provides a means to communicate for those who do not have spoken language. AAC is any tool, device, picture, word, symbol or gesture that compensates for expressive and receptive communication deficits. Individuals with autism who are not able to effectively utilize spoken language can use AAC to interact with others.

Cafiero’s style of writing is immediately accessible to both the skilled AAC professional and the novice reader. She opens her book with an explanation of why the AAC tools and strategies discussed are important for individuals with autism. This content is provided in both descriptive stories and with scientific data. The first two chapters provide an introduction to the strengths and challenges that individuals with autism experience in regards to communication.

Chapter three provides information on the AAC tools, devices and strategies that can be used to promote effective communication for individuals with autism. Cafiero covers the range from the low-tech picture communication symbol through high-tech electronic systems and everything inbetween. In addition to the descriptions of available tools and devices, there are personal stories of how these tools were used by individuals with autism to promote effective communication. Most importantly, Cafiero provides direct guidance and how-to instructions. 

AAC assessment is addressed in chapter four. Three distinct models of assessment are described and examples are given. The necessity of a quality assessment is highlighted. Cafiero states that the nature of learners with autism and the continued progress of technology require that the AAC assessment process be dynamic. Assessment decisions may need to be modified as the learner with autism gains skills and/or as technology development advances.

Chapter five is an overview of AAC and the law. Cafiero provides a comprehensive list of the laws that support the provision of AAC tools and supports. The majority of the chapter addresses the needs of children; however, there is some content for adults as well.

Cafiero’s book also includes a helpful section titled “frequently asked questions.” This question and answer format is reader-friendly and allows for quick access to the common areas of concern a reader might ponder.

Meaningful Exchanges for People with Autism should be considered a go-to resource for readers interested in providing effective language and communication interventions for individuals with autism.


Add our new widget to your blog, MySpace or Facebook page!

The Easter Seals and Autism widget (a portable charity badge) is an easy, fun and secure way you can help raise funds for Easter Seals’ autism services and let families living with autism know that Easter Seals is here to help — today.

To get started, just register to use the widget, set a fundraising goal, and place the Easter Seals widget on your blog, social networking page or Web site. That’s it!

Click here to get started.


Five stars for the new autism bookstore!

Check out the new “Bookstore” link on our autism Web site – the list features books reviewed on this blog, and every time you order a book through our bookstore, a portion of that sale will go to Easter Seals.

Ellen Harrington-Kane, assistant vice president for medical rehabilitation and autism services at Easter Seals, plays a leading role on the Easter Seals and Autism panel of reviewers.

She posted a review of Beyond the Wall –- Stephen Shore’s book about his life with autism — after seeing him speak at the annual Easter Seals Training Conference. A month later, she posted a review of Unstrange Minds by Roy Richard Grinker.

If you know of books you’d like our panel of book reviewers to read, please comment to this post and let us know.

A disclaimer: one book that made it on the Easter Seals and Autism Bookstore list without getting reviewed on our blog first is … a book I wrote! I am flattered that our panel of reviewers chose to add Long Time, No See to the list, and delighted to know that buying my book –- and the others from the Easter Seals and Autism Bookstore –- will help Easter Seals.


August is the best month

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?

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?

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?

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.