A global issue, without boundaries

by Patricia Wright

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”

by Patricia Wright

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!

by Beth Finke

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!

by Beth Finke

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

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.