New prevalence = increased demand for services and supports

by Patricia Wright

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

by Beth Finke

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.

Is clumsiness a sign of autism?

by Beth Finke

Patricia Wright’s post about surfing star Clay Marzo Included a quote from an Outside Magazine article that really caught my eye.

While many children with Asperger’s are marked by their lack of coordination — “motor clumsiness” is a very common trait — Clay moves in the water with an uncommon grace.

I’m reluctant to admit this, being the Easter Seals autism blog moderator and all, but it hadn’t occurred to me that “clumsiness” was a sign of autism! Had I missed something?

To reassure myself, I went to the Could My Child Have Autism? page on our Easter Seals Act for Autism site to check out the list of symptoms again.

Generally speaking, children and adults with autism may…

Interact with others differently. They may appear to live a life of isolation or have difficulty understanding and expressing emotions or convey personal attachments in a different manner.

Not effectively use spoken language. Some have echolalia, a parrot-like repeating of what has been said to them. And, people with autism often have difficulty understanding the nonverbal aspect of language such as social cues, body language and vocal qualities (pitch, tone and volume).

Have difficulty relating to objects and events. They may have a great need for “sameness” that can make them upset if objects in their environment or time schedules change. Children with autism may not “play” with toys in the same manner as their peers and may become fixated to specific objects.

Overreact to sensory stimuli that they see, hear, touch, feel or taste; or, conversely, not react at all to various stimuli from the environment.

Have a different rate of development especially in the areas of communication, social and cognitive skills.

No mention of clumsiness there. In fact, the page went on to say that in contrast to cognitive skills, motor development may occur at a typical rate in children with autism.

Clay Marzo’s surfing success is just another reminder that autism manifests itself differently for every person, it varies in the severity and type of symptoms. People with autism may have certain things in common, but there is no single behavior that is always typical of Autism.

I guess the thing to remember here is something Dr. Wright tells me all the time: If you’ve met one person with autism, you’ve done just that. You’ve met one person with autism.

National Standards Project: a resource for parents and professionals

by Patricia Wright

The other day I did a Google search on the word “autism.” The search resulted in more than 15 MILLION hits. With that plethora of information, it can be incredibly difficult for families and professionals to discern an appropriate treatment path.

The National Autism Center has released a great resource to help parents and service providers. It’s called the National Standards Project, and it provides critical information about which treatments have been shown to be effective for individuals with ASD.

The project looked at the core characteristics of ASD in children, adolescents, and young adults (those below 22 years of age) and examined and quantified the level of research supporting interventions. Eleven treatments were found to have significant evidence.

The National Autism Center launched the National Standards Project in 2005. The project benefited from the support and guidance of an expert panel composed of nationally recognized scholars, researchers, and other leaders. The culmination of this rigorous multi-year project is the National Standards Report, the most comprehensive analysis available to date about treatments for children and adolescents with ASD.

The National Standards Project will provide guidance, encourage families and service providers to make informed decisions, and promote the use of evidence-based treatments. And with the implementation of these standards, our outcome will be citizens with autism who move into adulthood with increased skills and the ability to contribute their talents to our diverse communities.

Visit the National Autism Center Web site to access a copy of the report.

ABA at Easter Seals Southeast Wisconsin

by Bob Glowacki

Here at Easter Seals Southeast Wisconsin we are moving toward adding Applied Behavior Analysis (ABA) to our list of services so that we can give children with Autism the best outcomes. Our first objective was to hire the right person to serve as Autism Services Manager and organize the program. We found that person in Paul Messling, and I’m pleased to introduce him as a guest blogger today. Paul’s thoughts reflect his obvious enthusiasm and passion for services to children with Autism.

ABA at Easter Seals Southeast Wisconsin
by Paul Messling

Several months ago I received a forwarded email from my former graduate school advisor at the University of Wisconsin – Milwaukee. He thought a job opening at Easter Seals Southeast Wisconsin might be right up my alley. After reading the posting for Autism Services Manager, I printed it out and left it for my wife to read. Her response, scrawled in bold letters across the top of the page, was WHAT ARE YOU WAITING FOR? Not being one to argue, my resume went out shortly after that.

Upon reflection, I guess I had already been waiting over eight years for this opportunity. After completing my undergraduate degree in psychology, I finally found direction in 2001 when I began working for a local autism services provider. After receiving a Masters Degree in behavior analysis, I got my Board Certified Behavior Analyst (BCBA) credentials in 2005.

The minute I arrived for my interview at Easter Seals Southeast Wisconsin I really felt the kind of pioneering spirit I was looking for. The opportunity to build a new program based upon Easter Seals longstanding tradition of community service left me in awe.

So where does this leave us now? Fortunately in Wisconsin we have a state-funded program that provides some resources for autism treatment. Marketing strategies and materials are being developed, referral sources are being sought out, grants ideas are being developed for teaching materials, and we are preparing to hire our first therapists in the near future. Once that occurs our program will focus on the Verbal Behavior Approach to ABA and errorless teaching with a special emphasis on therapist and caregiver training using video feedback.

I am very grateful to have this opportunity with Easter Seals. In a brief period I’ve already seen this organization’s unwavering commitment to helping individuals with disabilities. I look forward to translating that sentiment into services for children on the autism spectrum in Wisconsin, so each family we meet leaves better for the experience.

In memory of Roger McCarville

by Beth Finke

Easter Seals is mourning the death of Roger McCarville, who died of pneumonia on September 7. You might recognize Roger’s name — Matt McAlear published a post here about Roger McCarville’s A Wider World show on PBS earlier this month. Roger was the host of that show, and he was honored with an Easter Seals Distinguished Service Award in 2008.

Roger lost his legs in a boating accident in 1975, and he took that personal tragedy and turned it into a career as an advocate for people with disabilities. He was a delegate for Easter Seals Michigan and served on Easter Seals Michigan’s Board of Directors. He was also an active member of the Paralyzed Veterans of America, the Rehabilitation Institute of Michigan, the Paralympics Games and the Michigan Athletes with Disabilities Hall of Fame.

Our blogger Matt McAlear met McCarville after the TV host came to Easter Seals Bay Area to interview them about their Early Intervention Autism Project. The show aired in twelve different markets this summer. Easter Seals Bay Area has been receiving calls, emails, kudos, and support ever since the show aired on PBS, and subsequentlyon YouTube. From Matt’s blog post :

Throughout the day, both on and off camera, Roger went beyond the typical interview questions. He made a genuine effort to connect with each of us individually. Roger kept us laughing all day, and he was a pleasure to work with. He was truly interested in the work we do and the individuals we serve everyday through the Early Intervention Autism Project.

Roger McCarville was truly one-of-a-kind. He will be missed.

School fights family over autism assistance dog

by Beth Finke

The Associated Press reports that an Illinois family wants their 6-year-old son, who has autism, to be able to bring his dog along to school this year. The family said the dog would help with the transition to a new place and would also help keep him safe from traffic and other dangers. Service dogs are allowed in the boy’s school, but opponents claim this dog is just a source of comfort rather than a true service dog.

Bark Magazine responded to the AP story with a blog post:

What constitutes a service dog? Is it the old-fashioned definition of being a guide dog for a blind person or are we as a society ready to wholeheartedly expand our definition to dogs who alert people with diabetes or epilepsy to impending problems, dogs who provide people with emotional stability that they cannot achieve on their own, dogs who support people physically in case of loss of balance, dogs who protect impulsive children from running towards the road or other perilous situations and dogs who allow children to handle school when they might otherwise be incapable of doing so?

How do we distinguish between service dogs and dogs who are merely helpful but not in any official capacity?

A post I wrote here last year spelled out the legal way to distinguish service animals from companion animals:

To qualify as a service animal under the ADA, a dog must be “partnered with a person with a disability and individually trained to do work or perform tasks for the benefit of that person.”

A judge’s order in July allowed the dog to accompany the boy when school started last week, but an official trial is scheduled for November, 2009 to determine if the dog can continue doing so. Courts will decide whether this boy’s dog performs tasks for him or simply acts as his companion.

Star surfer champions his autism

by Patricia Wright

Want to learn more about autism? Spend time with someone who has autism!

Surfing star Clay Marzo is doing his part by educating his fellow surfers. Clay was diagnosed with Asperger’s Syndrome a few years ago, and he has been informing the surfing community about disability ever since. Marzo’s participation in surfing contests gives his fellow surfers the opportunity to learn about autism from an expert – a person with autism.

Marzo took a break from contests and visibility for a while, but now he is back in the mix. In fact, Clay is one of the most celebrated surfers in the world. He just turned 20, and he’s already won a number of Hawaiian titles. He’s a mainstay on YouTube (a few of his clips have been watched more than 50,000 times) and a story about Clay Marzo in this month’s Outside Magazine describes his obsession with surfing.

While Clay has many of these deficits—he’s easily overwhelmed by other people and often struggles to express himself—he also demonstrates one of the distinguishing features of Asperger’s: an “encompassing preoccupation” with a narrow subject. Some children with the syndrome become obsessed with 19th-century trains or coffee makers or The Price Is Right. Others will memorize camera serial numbers, even if they show little interest in photography. Hans Asperger, the Viennese pediatrician who first identified the disorder in 1944, argued that such obsessiveness can be a prerequisite for important achievement, even if
it comes at a steep social cost: “It seems that for success in science or art, a dash of autism is essential,” Asperger wrote. “The necessary ingredient may be an ability to turn away from the everyday world … with all abilities canalized into the one specialty.”

Marzo won the Quiksilver Pro Puerto Escondido this summer, and his victory sends a very powerful message: Significant success in life is possible if you have autism.

Spread the word: free technology for people with autism

by Beth Finke

Technology can provide exhilarating possibilities to the 54 million of us in America who have disabilities. But a study commissioned by the California Endowment and conducted by the Alliance for Technology Access found that fewer than 25% of us who could be helped by assistive technology are using it to our advantage. The study said most people with disabilities “make do” without assistive technology. Sometimes they’re unaware that technology is available, other times they don’t know how to obtain it.

Easter Seals’ national Director of Autism Services, Patricia Wright, has published a number of posts here about assistive technology available free-of-cost to people with autism. Just last month she wrote about SketchUp, a free software program offered by Google that people with autism have found helpful.

In a post called Making the Internet work for people with autism, Patricia linked to an Associated Press article about a creative grandfather who wanted his grandson to have access to the web. His grandson has autism and needed some accommodations.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn’t find anything satisfactory. So he had one built, named it the Zac Browser for Autistic Children in honor of his grandson, and is making it available to anyone for free.

The browser is available at www.zacbrowser.com.

In another post Patricia touted a symbol-based browser called Webwide and explained how to use it for free on a 30-day trial basis.

I have tried Webwide myself and know individuals with autism who are able to interpret and understand information more successfully using the symbol supports and added visual cues Webwide provides. It’s a fantastic tool.

Please help us spread the word about these products that are available free of charge. Maybe at least some of the frustrations of autism could be solved if the technology got into the right hands.

Temple Grandin: A Breath of Fresh Air

by Beth Finke

Imagine my happy surprise to switch on the radio Tuesday morning and hear Terry Gross interviewing Temple Grandin on NPR’s Fresh Air. Turns out the show was a re-broadcast. It’s “Animal Week” on Fresh Air, and their January 5, 2009 interview with Grandin was one of their best animal-related stories this year, so they decided to air it again. You see, Temple Grandin is a professor of animal science, and she’s the author of many books. She also happens to have autism.

Two years ago Heather Pint published a book review here of Temple Grandin’s memoir, Thinking in Pictures: and Other Reports from My Life with Autism. In her review, Pint described Grandin’s early years as isolating, particularly since autism spectrum disorders were fairly unknown at the time.

During the Fresh Air interview Tuesday, Terry Gross asked Grandin what it was that prevented her from being isolated like that her entire life. Grandin’s answer? Early intervention. “I started speech therapy when I was two-and-a-half years old.”

Patricia Wright, the National Director of Autism Services here at Easter Seals, wrote a blog post last April about the merits of early intervention.

Autism affects everyone differently and involves challenges in communication, social skills, and behaviors. If you’re worried your child may have autism — or feel something just isn’t right — follow your instincts. Don’t assume that your child will catch up. Share your concerns with your pediatrician. Look into your state’s early intervention program. Get a diagnosis. And seek support from community service and treatment providers like Easter Seals.

I’m sure Temple Grandin would agree with Patricia! If you missed the Fresh Air interview you can access it as a Fresh Air archived podcast or via iTunes.