Siblings of children with autism more likely to have mild traits of ASD

by Beth Finke

Our friends at the Autism Society of America have posted an article on their web site about a recent study led by researchers at Washington University School of Medicine in St. Louis. The study found mild traits (not strong enough to get an ASD diagnosis) present in the siblings of children with autism at significantly higher rates than seen in the general population. From the ASA article:

“Mild symptoms, called quantitative traits, may be confounding studies that compare children with autism to their siblings,” says first author John N. Constantino, M.D. “Researchers presume one child is affected, and the other is not, but our findings suggest that although one child may have autism while the other does not, it’s very possible both children are affected to some degree by genes that contribute to autism.”

The study It also found that while many female siblings had subtle traits, few were diagnosed with ASD.

Boys are thought to be affected four times more often than girls. But when the researchers used standardized methods to account for the presence of quantitative traits, the rate looked more like three affected boys for every two affected girls.

“The gender difference may not be as pronounced as we once thought it was,” Constantino says. “If we rely only on a professional diagnosis of autism to determine who is affected, then boys vastly outnumber girls. But it may be that many girls are being missed.”

More information on the study is available now from a Washington University press release, and the findings will be published in the November issue of the American Journal of Psychiatry.

You are not alone — tips for dealing with stress

by Beth Finke

I am pleased to introduce our guest blogger, Laura Shumaker. Laura had a piece published in the New York Times in August about her 24-year-old son Matthew, who has autism. You might also remember the post Laura wrote for us last March — it was about providing evidence-based treatment for individuals with autism through the lifespan. We are delighted to welcome her back to the Easter Seals and autism blog — it is our privilege to publish yet another one of her very thoughtful guest posts here.

You are not alone – tips to help with stress
by Laura Shumaker

In the past several months, there have been numerous stories of mothers abusing, even killing children who have autism. “But she was such a good mother,” is often the response of family, friends and neighbors. “She had the patience of a saint. She was great with her child. She must have just snapped.”

Research indicates that parents of children with autism experience greater stress than parents of children with intellectual disabilities and Down Syndrome (Holroyd & McArthur, 1976; Donovan, 1988). There is no doubt that the relentlessness of raising a child with autism (managing peculiar and sometimes aggressive behavior, adjusting to strange sleep patterns, paying for therapy, worrying about the future — just writing this is making me anxious!) can push even the strongest parent dangerously close to the edge.

So here is what I, the well seasoned mother of a 24-year-old son with autism propose you do to make your life less edgy:

• Get a break. How many of you have a regularly scheduled time that is just for you during the week that you can do something that you really enjoy? Ask your local Department of Developmental Services if your family qualifies for respite services. Matthew has been attending
  Easter Seals Programs and camps since he was very young, giving our family time to decompress and recharge.
• Exercise. I know, hard to find the time, but find the time (I used to get up REALLY early when my kids were little and go running or walking, sometimes with a baby on my back). You’ll feel better, stronger and more resilient.
• Connect with others in your situation that get it. Vent, laugh, cry. (Sounds like a sequel to Eat Pray Love. “There is nothing better than the encouragement of a good friend.” — Katharine Butler Hathaway
• Educate yourself. Unlike some areas of physical medicine where the problem may have a clear cut course of treatment, we’re dealing with something that doesn’t have a clear cut solution. There is a lot of exciting new research in the field of autism. It’s essential that we take the time to keep up to speed. My local Easter Seals affiliate has a terrific parent’s education program, and I’m sure yours does too.
• Get help. When Matthew was about 10, I was getting sick all of the time (like sick in the hospital for two weeks with pneumonia sick). My doctor thought that it was because of stress, and that a therapist might help. I still remember rolling my eyes and saying “How can a therapist help me? I just have to learn to deal with it.” In the end, I did go to the therapist, she helped me “deal with it” and I’m certain she also saved my life. Some are not comfortable with the idea of one-on-one therapy. I understand. But trust me, you’ll feel more comfortable if you try it. Group therapy is also an option.
• Last but certainly not least, turn to Easter Seals for answers to your questions. Did you know that Easter Seals is the leading non-profit provider of services for individuals with autism? Check your local Easter Seals affiliate for information, help and resources.

You are NOT alone.

I always knew our national director was exceptional

by Beth Finke

My friend and colleague Patricia Wright, Easter Seals’ National Director of Autism Services, was interviewed on Boston’s #1 FM station Magic 106.7 last month as part of its Exceptional Women series.

The series highlights women who have achieved greatness in their lives, and Dr. Wright certainly qualifies! From the Magic 106.7 web site:

Dr. Wright has a passion for education and advocacy, ensuring that individuals with Autism Spectrum Disorders
(ASD) and other disabilities are fully included in society.

During the interview, Patricia spoke about Easter Seals autism services, especially the importance of early diagnosis and early intervention. If you missed hearing Patricia on the air, don’t worry — you can download or stream her interview here on Magic 106.7.

Congrats, Patricia!

Library program goes to the dogs!

by Beth Finke

Last week I was lucky enough to be one of the Illinois authors invited to the Illinois Library Association annual conference at Navy Pier here in Chicago. While there, I couldn’t help but notice a session about a unique library experience for children with autism.

Once a month, children across the autism spectrum are invited to the Plainfield Public Library to interact with therapy dogs in a safe, nurturing environment. I’ve heard of therapy dogs before, and my Seeing Eye dog Hanni and I volunteer for a reading program with the Chicago Public Schools. But I’d never heard of a library therapy dog program catered specifically to children with autism before.

Attendees to this session last week heard program success stories, and then superstar therapy dog Abbey gave a presentation. Librarians were encouraged to link to Rainbow Animal Assisted Therapy for information on how to start up a similar program at their own library for children with autism.

My dog Hanni is ten years old and set to retire soon. Who knows? Maybe in her retirement, she’ll decide to volunteer in a library program like this!

When getting a job is no longer a “remarkable accomplishment”

by Patricia Wright

Today is October 1, and October is National Disability Employment Awareness Month. Yes. You read that right. Employment of persons with disabilities is such a huge issue that it actually has its own month!

Having a job is key in our society. Regular income allows a person to live where they want and engage in activities they choose. Unfortunately employment eludes many people with disabilities — even those who REALLY want to work and have amazing skills to contribute.

Every professional in autism has a few success stories they like to pull out of their hats when asked about employing someone with autism. My student Duke was successfully employed at the neighborhood movie theater. Lars Perner is a professor at USC. And of course Temple Grandin is a highly successful animal scientist.

I’m proud of those three hard-working people, but one day I would like to be able to stop telling these “amazing” success stories. Instead, I’d like to celebrate that every individual with autism seeking gainful employment is able to accomplish this objective. I look forward to celebrating a day when getting a job is not considered a remarkable accomplishment — just one of the processes of adulthood.

In an effort to promote employment for people with autism, Easter Seals has joined efforts with Sumida River Solutions (SRS), a global for-profit social innovation organization founded on the principles of Neurodiversity & Autism Advocacy. SRS and Easter Seals are working together to match highly talented individuals who have autism with full-time employment and contract opportunities at large corporations.

As more and more people with autism gain meaningful employment, their success stories can blend into the message that “adults work — those with autism, and those without.”

Transitioning from high school to college or work

by Beth Finke

It was interesting to read that U.S. Rep. George Miller (D-CA), chairman of the House Education and Labor Committee, has asked the U.S. Government Accountability Office (GAO) to examine the effectiveness of federal programs that help students with disabilities transition from high school to college or the workforce. We at Easter Seals are painfully aware of how desperately families with autism need life-long services for their loved ones. This not only includes school-to-work transitions, but employment support, residential and community support, and financial planning, too.

Easter Seals has taken action to address these needs through participation in Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism.

The Justice For All activist blog quoted directly from a letter Congressman Miller wrote about existing programs serving students with disabilities after high school graduation:

“Currently, educators across the United States are striving to ensure that all public school students are college and career ready to enable their success in this global economy,” Miller wrote. “However, students with disabilities often face academic, physical, social, and economic challenges when transitioning from high school to postsecondary education or the workforce. As a result, they are less likely than other students to make this transition successfully.

“The federal government plays a significant role in supporting students with disabilities through a variety of programs. I remain concerned about whether federal efforts adequately provide a comprehensive, coordinated approach to transition services for youth with disabilities.”

Studies show that students with autism and other disabilities graduate high school at a far lower rate than their peers, and fewer still go on to college. In August 2010, the unemployment rate for those with disabilities was 15.6 percent. Good to hear Congressman Miller is looking into which programs are working — and which aren’t working — when it comes to transitioning students with autism and other disabilities from high school to post-secondary education and the work force.

Children with autism can improve thinking skills over time

by Beth Finke

A story in U.S. News and World Report last week reported that new research shows “Children with Autism Improve Key Thinking Skills Over Time.” To me, this seemed like, well, a no-brainer. But I guess a lot of research on children with autism has focused on whether communication skills and behavior can change, rather than on cognitive skills. From the article:

Thinking problems typical of autism include difficulties predicting other people’s behavior based on their thoughts and feelings (known as theory of mind), and in problem-solving and planning (executive function).

The article quotes Elizabeth Pellicano, senior lecturer in autism education at the Institute of Education in London. Pellicano tested 37 children with autism (and 31 children who do not have autism) when they were five or six years old. Then, three years later, she tested them again.

While cognitive skills varied from child to child, most of the children with autism improved their abilities in theory of mind and executive function; when older, the children could better appreciate the thoughts and feelings of others and they were better able to plan and regulate their feelings than they were three years earlier, Pellicano reported in the October issue of Child Development.

In the article, Pellicano suggested that parents of children with autism should be encouraged by these findings and use this information to think differently about their child’s potential.

Excuse me while I yawn

by Beth Finke

Last week I heard a story on MSNBC saying that children with autism tend not to yawn in response to seeing others yawn. The story referred to a study published in the September/October issue of the journal Child Development that described yawning as a sort of “emotional contagion.” Molly Helt, a doctoral candidate at the University of Connecticut, got the idea to study yawning when she was on a flight with her son, who has autism.

In an attempt to help relieve painful pressure in her son’s ears, she tried to get him to yawn by yawning right in front of him.

About 45 percent of us yawn when we see someone else yawn, but Helt’s yawns had no such effect on her little one.

In Helt’s study, researchers watched children while they listened to a story read aloud. The storyteller yawned four times during the reading, and 43% of the typically developing children in the study yawned. None of the children with an autistic disorder yawned contagiously, and about 23 percent of children with pervasive developmental disorder yawned. From the MSNBC story:

“Yawning when you see someone else yawn requires empathy, on a certain level,” Helt said.

She found that most children with autism are unlikely to copy this behavior, and the finding may help scientists better understand important aspects of human communication and social behavior that children with autism don’t experience.

Those of you who follow this blog know I’m blind. I never see people yawn. I’m wondering now if I don’t yawn as much as other people do. I’ll tell you this, though … just writing about yawning is making me feel tired!