Living with Autism Study in the news!

It’s no surprise that the Easter Seals Living with Autism Study has been getting a lot of media attention since Tuesday, when we revealed the results. After all, autism now affects more than 1.5 million Americans and their families, and the study results paint a startling picture of the life-long fears, anxieties and critical supports needed to raise a child with autism.

A US News & World Report blog post points out how the strain on families raising a child with autism can be different than that on families raising children with other disabilities.

“But every time we look at autism versus other disabilities, the disparity is greater,” says Patricia Wright, national director of autism services for Easter Seals, a Chicago-based organization that provides services for people with disabilities. She came by U.S. News’s offices today to talk about why autism feels different than other disabilities.

We have a pretty good idea how to accommodate physical disabilities — a person with a wheelchair needs a ramp, or a person who can’t see needs Braille signs. But with autism, the disability comes in communication and social skills. “Having a colleague that would never look me in the eye?” asks Wright. “Our society is not as accommodating.”

The Chicago Tribune ran two stories. One features Wendy Murphy, a member of the Easter Seals Autism Spokesperson Network, and Another story looks closely at the findings.

The Republican, a newspaper in Springfield, Mass., caught Patricia Wright during a cab on her way to US News & World Report.

She said in a phone interview that the number of cases of autism has “risen dramatically in the past five years.”

Her information and referral service at Easter Seals, headquartered in Chicago, gets some 800 calls a month from parents with such questions as “Where can I get a speech pathologist?” and “Where can I find a school that will help my child?

“Parents are overwhelmed just by daily activities,” said Wright. “Trying to network and find resources can be overwhelming.”

MassMutual is headquartered in Springfield, and Joanne M. Gruszkos, director of the SpecialCare program of MassMutual, was also quoted in that article.

“Parents don’t want to live one day longer than their child,” said Gruszkos, and their fear is “a tremendous stressor.”

In planning for the future, said Gruszkos, it’s especially important for families with autism to work with a professional who specializes in special needs life-care planning.

Such a professional would know, for example, that having more than $2,000 in assets in a child’s name would disqualify him from government benefits, she said.

Also important, said Gruszkos, is to put into writing care instructions for the autistic child, including emergency contacts, medical history and arrangements for living, education and work. MassMutual calls this a “letter of intent.”

Read more about the Easter Seals Living with Autism Study in the Peoria Journal-Star and in Education Week (subscription only).

Blogger Kristina Chew also highlighted the study on AutismVox, and Lisa Jo Rudy covered it on the Autism blog.

This media attention is terrific. It will help Easter Seals use these findings to raise awareness of — and advocate for — the life-long services families living with autism desperately need.


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