Autism challenges shared with state legislators

by Julia Kim

Last week I was part of an Easter Seals delegation that attended the 2008 Legislative Summit hosted by the National Conference of State Legislatures in New Orleans. This is the fourth summit Easter Seals has attended. As in previous years, we hosted an exhibit booth where we described our programs and services. This year we also gave a presentation on “State and Federal Activities Related to Autism,” co-sponsored by the Association of University Centers on Disabilities.

Now that I’m back in D.C., I’ve had time to reflect on what a great conference this was. New Orleans served as a fitting backdrop to engage state legislators and legislative staff in a dialogue to address the unmet needs of people with autism.

Our 2008 State Autism Profiles, distributed at our booth and during our session, were a hit — providing everyone with factual, objective descriptions of what the 50 States, D.C. and Puerto Rico are doing for people with autism. Easter Seals and the Autism Society of America worked together to create these useful profiles.

Coincidentally, Louisiana Governor Bobby Jindal recently signed a bill into law (H.B. 958) on July 1 that provides health insurance coverage for the diagnosis and treatment of autism spectrum disorders in individuals younger than 17 years old. The timing couldn’t be better!

Read Julia Kim’s biography

Who’s to blame for autism?

by Patricia Wright

Michael Savage has received far too much press for his despicable statement about autism.

In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.

This pronouncement of his caused a big stir and was then (unfortunately) repeated by those who wish to provide commentary. I am loathe to write about his comments as I think many individuals in the media make radical statements just to garner additional press. I am hesitant to reinforce him by providing yet another forum to repeat his words.

But here’s the thing. His despicable comment just shows us once again how some need to engage in blame in re: disability. Must it be somebody’s “fault” that a child has a disability? To me this is the crux of Savage’s comment — he continues the mythology that there must be a person or action to blame for the manifestation of the behaviors related to autism.

Parents of children with autism have had to absorb this blame once too often. In the 1940’s Bruno Bettelheim coined the term Refrigerator Mothers, implying that poor parenting resulted in autism. Years passed before this ridiculous theory was disproven. And all that time, parents had to endure the incredible hardship of blame in addition to the challenges associated with supporting a child with autism.

Over 20 years ago, I heard Norm Kunc, a disability rights advocate, state that, “disability is the nature of the human condition.” I’ve never forgotten his words. Parents should not be blamed for autism. Autism is a component of the human condition.

CVS and All Kids Can

by Beth Finke

About this time a year ago, I was preparing to visit a summer school class of future educators. Most of the students I talked to at Elmhurst College last year graduated in May. They’ll be teaching in another month, and it’s likely they’ll have children with disabilities in their classes.

While I was preparing my talk last year, I wrote a post about my concerns for those future teachers and published it here on the Easter Seals autism blog.

The students I talked to on Thursday are studying to be general education teachers. As part of their curriculum they are required to take one — just one — course in special education.

Considering that more than 95 percent of students with autism and other disabilities receive some or all of their education in regular classrooms, can one special education course for future teachers be enough?

I know those college students I spoke to last year benefitted from hearing how inclusion played a major role in the life of my son, who has severe disabilities. But I’m only one woman. I can’t do it alone. That’s why I’m grateful to All Kids Can.

Created by the CVS/pharmacy Charitable Trust, All Kids Can is a five-year, $25 million commitment to making life easier for children with disabilities. Through this signature program, CVS and the Trust help nonprofit organizations like Easter Seals raise awareness in schools and in local communities about the importance of inclusion. In 2007, $350,000 in All Kids Can Fund grants went to support Easter Seals affiliates across the country. Last May, CVS Caremark Charitable Trust awarded another $350,000 in grants
to Easter Seals’ autism programs. This means the CVS Trust has now donated a total of $1 million to support Easter Seals autism
services nationwide.

Those students I talked to last year? They’ll do well in their new careers, thanks in part to programs like All Kids Can. This CVS/pharmacy Charitable Trust Program not only helps teachers do their work, it also serves to remind all of us that … All Kids Can!

Listen to a radio essay about my Easter Seals gig

by Beth Finke

Ever wonder how the heck a woman like me, blind and unable to see a computer screen, ended up moderating the autism blog for Easter Seals? Listen to (or read) my Navigating a New Workplace essay on Chicago Public Radio and find out — the piece aired yesterday.

The essay features sound bites of my talking computer and focuses on the internship that got me started here at Easter Seals in 2006. I became involved with Easter Seals when I participated in the Technology Opportunities Program (TOP) grant Easter Seals received from the U.S. Department of Commerce. The Interactive Marketing Group at Easter Seals Headquarters used the grant to work with Convio, a software company, to create web content management tools for people who are blind.

Easter Seals recruited blind and visually impaired interns from all over the country to work with the software and learn web content management skills.

I was one of those interns. Once my 10-month TOP internship was completed, Easter Seals Headquarters hired me as the “Interactive Community Coordinator.” What that fancy title means is that I’m the one moderating the Easter Seals and Autism blog — I read through blog comments on a daily basis and forward your comments to Easter Seals blog authors and information and referral staff.

I use assistive technology to do my work — a computer program called JAWS reads the text on my screen out loud. That’s how I’m able to read your comments. I tell people I’m the only blind woman in America being paid to moderate a blog. I’m not sure if that’s true, but so far no one has challenged me on that statement.

Tomorrow I’m presenting a “Blogging by Ear” session at the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) International Convention here in Chicago. So now I’m adding another unsubstantiated claim to my resume: I am the only blind woman in America leading sessions encouraging others to blog!

Family with autism embraces laughter — and chaos

by Beth Finke

If you missed it, an absolutely beautiful essay in yesterday’s Washington Post describes a mother’s love for — and appreciation of — her son Owen, who has autism.

My favorite line from the essay:

How absurd, how absurdly delightful, to be drawn into Owen’s world and yet still stand outside it, appreciating its contrast to the typical one.

The essayist, Wystan Gladish Simons, goes on about the importance of laughter in Owen’s life.

It’s important to know that Owen laughs a lot himself. He seems in some way to understand how silly things are even when he is the one obsessively drawn to do them, such as collecting the flatware and putting it into the bed, the tub or the trash can. I am sure that I couldn’t laugh if he didn’t

Never fear, though — the essay isn’t one of those saccharine-sweet pieces about how families with autism should just laugh off their troubles. This essay is more real than that. That’s why it’s so beautiful.

I can’t always laugh anyway. Plenty of the things he does just aren’t funny.

Like so many other good pieces of writing, this one is best read in its entirety. Take a minute and click on the link to the Washington Post essay. Trust me — you’ll be glad you did.

Autism-recognition training for police

by Beth Finke

Ever since January 1 of this year, new police officers here in Illinois have been required to take autism-recognition instruction. Some local police departments are extending the training to all first-responders on their staffs.

An article in today’s Chicago Tribune reports that a growing number of states are requiring autism-recognition training for law enforcement officials.

Illinois legislators last fall voted to require that newly-recruited officers be taught to identify and interact with people who have autism and other developmental disabilities. Florida, Indiana, Maine, North Carolina and Pennsylvania also require autism training, said [Dennis] Debbaudt, who trains law enforcement officials nationwide on autism awareness. New Jersey legislators last month approved autism preparation for emergency workers.

“It’s a matter of learning a few skills that could turn the situation around,” said Illinois Sen. John Millner (R-Carol Stream), a former police chief who co-sponsored the legislation.

The Tribune article also gives some examples of tools that help officers communicate with people who have autism: flash cards, for example. An interesting read — check it out!

Autism is global

by Patricia Wright

A reader from the Philippines commented to our blog with a question about autism services. I know of two support organizations in the Philippines: Autism Pinoy and the Autism Society of Philippines.

Those of you who read my blog about attending the Asian Autism Conference know I was lucky enough to go to Hong Kong last year.

The Autism Parents Network of Hong Kong sponsored the event and organized the extensive array of learning opportunities. The message from parents, who reside throughout Asia (Hong Kong, mainland China, Philippines, Japan), was the same — we need information and support.

I have never had the pleasure of traveling or working in the Philippines, but I do know that The Autism Society of America (ASA) hosted an autism confrence in the Philippines in 2007. Having just returned from a weekend of learning and sharing at the ASA conference in Orlando, I am hopeful that the 2007 conference in the Philippines also brought people together to increase knowledge and understanding.

Sleepless on the spectrum

by Beth Finke

Our son has never slept well. At home he always had problems falling asleep, then had problems staying asleep. As a result, so did we.

I used to think, “well, that’s just Gus. It’s part of his personality.” But after reading a post on Autism Research Blog: Translating Autism I realize Gus isn’t the only kid with a disability who found it hard to fall asleep at night.

Parents of children with autism usually report that their children experience significant sleep problems, such as difficulty falling asleep. Yet, little research has been conducted on the specific type of sleep difficulties prevalent among children …

The blog post reviewed an article in the Journal of the American Academy of Child & Adolescent Psychiatry called Sleep Patterns in Preschool-Age Children With Autism, Developmental Delay, and Typical Development. The study found that children with autism sleep significantly less than typically developing kids in a 24-hour period. Of particular interest to me was the fact that typically developing kids had more awakenings than children with autism, but when kids with autism woke up in the night, they’d stay up significantly longer. This was always the case with our Gus.

This suggests that while children with autism do not seem to have difficulty staying asleep, they do experience difficulty falling asleep after sleep interruptions.

Gus is 21 years old now. He lives in a group home. Staff members there report that when Gus wakes up in the middle of the night, it’s pretty impossible to convince him to go back to sleep. It goes without saying that we miss Gus very much since he moved away. Still, I gotta admit … I really do appreciate a full night’s rest now.

Autism Society of America Conference

by Patricia Wright

I’ve been home a few days and am still sorting through all the information I gathered and the business cards I collected over the past weekend. I made so many wonderful contacts at the Autism Society of America (ASA) Conference! The three days that I spent learning and sharing were fantastic. The ASA conference is a great place to learn about what others are doing and share what is happening at Easter Seals.

I think one of the best features of the ASA Conference is how many individuals with autism attend. While spending time at the Easter Seals booth — or attending social events at the conference — individuals with autism were always around, an active presence at the conference.

I had the pleasure of sharing a van ride with James Williams who shared his perspective on the conference. When I asked him what he prefers about the ASA conference, James said, “The ASA conference is accepting.” I would absolutely agree. James spoke at last year’s ASA Conference. My colleague Ellen Harrington-Kane’s blog about James is here.

Learning and sharing in Orlando

by Patricia Wright

I am one of the lucky ones — I get to spend four days in Orlando at the Autism Society of America Conference. This conference brings together individuals on the spectrum, family members, experts and professionals. Easter Seals is proud to have a formal partnership with Autism Society of America. We’re here to learn and share. Through collaboration, we all become better able to meet the needs of individuals with autism.

Easter Seals has a booth in the exhibit area and will be presenting sessions about our autism services. We’ll be sharing information about three hot topics: State Autism Profiles, Study about Living with Autism and our Spanish-Speaking Hotline.

Autism insurance and legislation information is a topic of interest to many. Easter Seals, in collaboration with Autism Society of America , has gathered state-by-state information regarding autism. Check out our State Autism Profiles to see what’s happening in your state.

Easter Seals is interested in learning about the needs of parents and individuals with autism. Working alongside ASA, we’re currently gathering important data on this topic through a “Living with Autism” study being funded by one of Easter Seals’ national corporate partners, MassMutual Financial Group. If you sign up to receive our monthly enewsletter, you’ll be sure to hear from us when the results of this study are ready to share in early 2009.

Spanish speaking families and individuals with autism need information and support. Addressing health disparities is important to Easter Seals. To help address this need we have a dedicated spanish-speaking telephone hotline. A Spanish speaking information referral representative is available Monday to Friday, 9:00 a.m. to 5:00 p.m., Central Time, at 800.353.1799.

The Autism Society of America Conference is a wonderful place to build relationships and learn from each other. I look forward to sharing our three Easter Seals hot-topics and learning from the other attendees. If you too are one of the lucky ones attending the conference, stop by our booth and say hi!