Confusing Down Syndrome with autism?

by Beth Finke

After last night’s presidential debate, a post on a blog called Inside Autism wondered, “Does John McCain think autism and Down syndrome are the same thing? A lot of bloggers think so.”

That got me curious. After a bit of searching I found other blog posts on the subject, including this one from Brian Beutler’s Debate liveblog:

John McCain says Sarah Palin knows a lot about having children with autism. Presumably he thinks she knows more about this than anybody in the country. Presumably he also thinks autism is approximately equal to Down Syndrome.

If you missed the debate, here’s what happened. When Sen. McCain [R – AZ] was asked whether his running mate was qualified, he said:

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know.

I, for one, am willing to give McCain the benefit of the doubt on this one. I’m guessing he meant Palin understands autism because her baby son has special needs (he has Down Syndrome), plus her sister has a child with autism.

Sen. Obama [D – IL] used a question about the budget to address the autism issue.

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of use of the scalpel that we want to make sure that we’re funding some of those programs.

My Easter Seals colleague, Katy Beh Neas, was downright clairvoyant when she blogged last year about how autism would turn out to be an issue in the presidential campaign. Messages about the care and treatment of people living with autism and other special needs can now be found side-by-side with messages about foreign policy, our economy and global warming. Who would’ve guessed?

I’ll leave you with my favorite blog quip about autism from last night’s debate. It comes from Matthew Baldwin, author of the blog Defective Yeti. I’ve referred to Defective Yeti in an Easter Seals autism blog post before. After Baldwin’s son was diagnosed with Autism Spectrum Disorder (ASD), Defective Yeti started featuring posts about autism from time to time (in addition to the posts Baldwin already publishes on politics, movies and the like).

Only one sentence from Baldwin’s liveblog of the debate last night mentions autism, but I think that one sentence is brilliant.

6:40: At what point did “autism” become the center square on the Political Bingo card?

Playing with kids who have autism

by Bob Glowacki

Well, I saw “Blog Maven” Beth Finke at a conference in Chicago last week and she reminded me of a story I wanted to share.

Last month, I had the pleasure of leading a presentation with our speech therapist and P.L.A.Y. Project (Play and Language for Autistic Youngsters) consultant, Amanda Dobberstein at a local Kiwanis meeting. A family we see here at Easter Seals Southeast Wisconsin gave us permission to share a video that demonstrates the way we can use P.L.A.Y. Project in our state. The state of Wisconsin has approved the P.L.A.Y. Project as a fundable option for families eligible for the CLTS (Children’s Long Term Support) Waiver. Children who finish the intensive phase of the waiver and are moving to the ongoing phase can now receive funds to pay for P.L.A.Y. therapy.

At the start of the video we showed to the Kiwanis, you see a mother, son and daughter surrounded by toys — they look like any young family. You see little Jason moving around his mother, playing with different items, not engaging his sister at all. In most of the scene, Jason’s back is turned. He doesn’t always respond to his mother’s questions about the color of objects or the shape of the object. A family physically together, yet miles apart.

Second scene, that same mom and Jason playing together after just a few months in the P.L.A.Y. Project. Jason is asking mom to “make a roar” and tickle him. Mom makes three different noises (a chirp, a quack, a moo) but no roar. Jason says no to each. “No, Mom. a roar!” Finally, Jason raises his finger and says, “I got it! A LION!” Mom roars and tickles her son and giggles hysterically. It all ends in a hug.

No more playing around — now they play together.

See the difference? The two are learning about animals and sounds together during play time. We see moments of imaginative play, creativity, and engagement. Best of all, we see a loving moment between parent and child.

With autism, the social aspects that impede a child’s development can be the largest obstacle. The P.L.A.Y. Project is directed at those soft skills we all need — not just on the playground, but later in life at a job interview, around the water cooler and at social events.

Why I like shopping at Safeway

by Beth Finke

Every year, the U.S. Department of Labor gives the SPIRIT Award to an individual with a disability or an organization demonstrating leadership and “an unyielding commitment to achieving success.” There are over 1,700 Safeway stores across the United States and Canada, and Safeway’s national workforce includes over 10,000 employees with autism and other disabilities.

So it was no surprise to learn last week that Safeway Chairman, President and CEO Steve Burd was awarded the U.S. Department of Labor’s 2008 SPIRIT Award.

The SPIRIT award is part of the Department of Labor’s New Freedom Initiative, an effort to increase workplace opportunities and enhance workplace environments for people with disabilities. From the U.S. Department of Labor’s Office of Disability Employment Policy website:

Award recipients are recognized for their qualities to inspire and enhance the ability of Americans with disabilities to enter and participate fully in the 21st century workforce.

These qualities include:

• Strength in leadership
• Perseverance in unyielding commitment to achieving success
• Integrity
• Role model
• Independence
• Trail blazer

The SPIRIT Award is one of many honors Mr. Burd and Safeway have received for their dedication to people with disabilities — Safeway has been one of Easter Seals’ most generous corporate partners, and earlier this year we recognized Safeway as our top corporate sponsor for their contribution of $9.2 million to support Easter Seals services for people living with autism and other disabilities.

Safeway stores operate under various brand names across the U.S. and Canada, including Safeway (East Coast, Seattle, Portland, Northern California, Phoenix and Denver), Vons and Pavilions (Southern California and Nevada), Dominick’s (Chicago), Randalls and Tom Thumb (Texas), Genuardi’s (Philadelphia) and Carrs stores (Alaska).

I could go on and on about Safeway, but I gotta go get groceries. At Safeway, of course!

Book Review: Clarabell van Niekerk and Liezl Venter’s “Understanding Sam and Asperger Syndrome”

by Katy Beh Neas

I just read a great children’s book, Understanding Sam and Asperger Syndrome by Clarabell van Niekerk and Liezl Venter. This picture book is about an elementary school-aged boy named Sam and his family. I especially liked that this book has such a joyful portrayal of a family that is grounded in love … and that it focuses on Sam’s strengths and likes.

The book ends with 10 Tips for the Child Reader — these tips are designed to help the reader be a good friend to a child with Asperger’s. One such tip is “Treat your friend as a regular kid.” Another is “Some days can be tough.” Amen to both!

Easter Seals Autism Spokesperson Network

by Beth Finke

Yesterday I gave a short talk about blogging at our annual Easter Seals Autism Spokesperson Network meeting. The Easter Seals Autism Spokesperson Network is made up of autism experts who work at Easter Seals affiliates throughout the United States and Puerto Rico. They use their professional experience to serve as media resources — to get the message out that autism is treatable, and that people with autism can and do lead meaningful lives. They were all in Chicago yesterday to share ideas and get an update on the great things Easter Seals is doing for people with autism and their families. They were also learning good ways to let others know about all these services.

If you’re reading this post, you know that one of the best ways to get the word out is … blogging! For over a year now I’ve been telling people I’m the only blind woman in America being paid to moderate a blog. I’m not sure that’s true, but so far no one has challenged me on that statement. Now I add yet another unsubstantiated claim to my resume: I am the only blind woman in America leading sessions encouraging others to blog.

Keep an eye (for those of you using screen readers, an ear!) on our Easter Seals autism blog — If I did my job well during our presentation yesterday, you’ll soon be reading posts about autism from bloggers all over the country.

Insurance coverage for autism: not always a happy story

by Kathy Patrick

Parents of children with autism often worry whether their son or daughter is getting the right treatment, from the right provider, at the right time. Sometimes we wonder whether anyone cares.

Recently I experienced two wildly different approaches to customer service. Two months ago I made an appointment for Adam, my son with PDD-NOS, to have a central auditory processing disorder evaluation. This was one of those appointments I was actually looking forward to. I like telling “Adam’s story” when I know it could produce valuable outcomes. I don’t like telling Adam’s story when I sense that he won’t be eligible or that my time is being wasted. Maybe I’m still grieving that I never got to Italy (see my Welcoming my son to Holland post).

I don’t know. I just don’t enjoy telling the story unless there’s a real chance of a favorable outcome.

We arrived 15 minutes early to an outpatient clinic. Kids with significant physical disabilities and behavioral challenges were also being served there. Adam doesn’t think of himself as having a disability. Both of us sat in the waiting room, observing his peers, counting our blessings. The truth is, though, we are them. We need significant supports. Adam is a child with multiple concerns whose treatment is complex. As a parent and a case manager, I’m challenged every day with finding the right provider — one who accepts referrals and who takes our insurance. In this economy, I don’t have several thousand dollars to lay out. I appreciate the cause (Adam’s future), but the money just isn’t there.

So imagine my reaction when, five minutes into the registration process, the clerk tells me our insurance doesn’t cover the evaluation — $950. You’ve got to be joking. Why did they wait until registration to tell me this?

Crying, I took Adam’s hand and walked out. Through my tears, I tried to explain to this innocent 12-year-old what medical insurance coverage meant, and why there were problems. All he wanted to know was, “How come everyone else can listen to the teacher and I can’t?”

I drove away, still sobbing. then I remembered. I left the prescription at the desk. I returned. Wearing my I’m the mother, I’m the advocate, I’m the case manager and I’m mad as hell and I’m not going to take it anymore hat, I learned that I could pay half-price if I paid that day. “You should negotiate with your insurance company afterwards.” The outpatient supervisor made me feel like she really cared that Adam got the evaluation he needed.

What I heard from this encounter was, “We will do whatever is possible to have this happen today. Adam needs the evaluation, he’s here, the therapist is here, how can we make this happen?” They made it happen.

The next day I had a conversation with a representative of an agency overseeing Adam’s behavioral supports and progress. Adam needs a specialized behavioral therapist, and I have talked (read “told Adam’s story”) to over 20 therapists in the past few months with no success. Recently the case manager provided me with two referrals, assuring me that these referrals were accepting new patients. And that they took my insurance.

I contacted one months ago. She never called back. I assume that means, “uninterested, unable, unmoved by Adam’s story.” I did get through to the other recommended therapist. Despite what the agency said, this second one will not take our insurance.

Like I said at the beginning of this blog post, those of us who are parents of children with autism worry whether our kids are getting the right treatment, from the right provider, at the right time. With all these insurance and service issues, though, we’re left to worry whether our children will be able to get any treatment at all.

Autism and drowning — be careful!

by Beth Finke

After publishing the Father says son’s autism helped save his lifepost last month, I came across another post on the subject — it was on autismparents.net. That post, called Does water rescue downplay autism drowning risks?, has haunted me a bit ever since.

I would hate for any caregiver let their guard down by reading that “children with autism are very much at peace — very relaxed — in the water.” Drowning is the leading cause of death for children with autism!

That info made me wonder if I might have been a bit careless in my post, touting the way Christopher Marino, who has autism, is so comfortable in water that he survived an overnight ordeal in the ocean before being rescued by the Coast Guard. The autismparents.net blogger worries that stories like the one about Christopher Marino might lead people to think that children with autism are born swimmers. He worries parents might think their children with autism are out of harm’s way when near water.

In a post called Drowning among Autistics, the blogger from NTs Are Weird: An Autistic’s View of the World commented on the implication that children with autism were more likely to drown than average children.

… do you know that 1,600 people between 0 and 24 [years of age] drown each year, accidentally, in the U.S.? And if we expect 1 of 150 is autistic, about 11 autistics would drown accidentally each year, in the U.S. alone. That’s extremely sad, and that 1,600 number is a number we can and should do something about — these 1,600 people could have and should have had full lives. But sometimes the focus is lost from the fact that drowning, although very tragic, is not unheard of even in the “normal” population. And there isn’t a lot of evidence that it is more common among autistic people, either.

So I guess the jury is still out, whether or not children with autism are more likely to drown than average children. In the end, the only thing that matters is that we all be careful around water. Take it from Christina Chew. She writes about her son Charlie, who has autism, in a post on autismvox.

Being at the beach, water safety is not just a concern; it’s an every moment necessity. Charlie did a lot more swimming today (more on that later) and I still remember the relief I felt when, at the age of 6, he learned how to swim. This meant that, while still always keeping an eye on him, going to the pool and the beach was a bit (a bit) less nerve-wracking.

Book Review: Meme Hieneman, Karen Chiles, and Jane Sergay’s “Parenting with Positive Behavior Support”

by Lynn Sinnott

Parenting with Positive Behavioral Support: A Practical Guide to Resolving Your Child’s Difficult Behavior is a must-read for parents who have children with behavior problems. The guide book is easy to read, not too long, and packed full of information. An added plus: it has wonderful worksheets that parents (and others) can use as they begin to delve into and understand the cause and effect of their child’s behavior.

The authors track three different children (one with autism) to show how the simple steps and worksheets they provide can help develop a positive behavior support plan. Parents willing to utilize the worksheets will find they can make a difference in their child’s behavior.

I’m from Florida, so I take special pride in knowing that all three authors are wonderful Florida professionals who have children of their own. Like I say, this book is a must-read, not only to help resolve behavioral problems, but also as a great educational tool to begin to understand why the behavior is going on in the first place.

What did Paul Newman have in common with kids who have autism?

by Beth Finke

I just read a terrific post on Slate.com about Paul Newman’s Hole in the Wall Gang Camps for kids with serious illnesses.

While the post does not focus on autism per se, it says a lot about what it’s like to be judged “different” from others. It tells of Paul Newman regularly coming to camp to sit down at a lunch table with the campers.

One version of the story has the kid look from the picture of Newman on the Newman’s Own lemonade carton to Newman himself, then back to the carton and back to Newman again before asking, “Are you lost?” Another version: The kid looks steadily at him and demands, “Are you really Paul Human?” Newman loved those stories. He loved to talk about the little kids who had no clue who he was, this friendly old guy who kept showing up at camp to take them fishing.

It had never occurred to me before that superstar Paul Newman had anything in common with kids suffering from serious illnesses, kids on the autism spectrum, people (of all ages!) with disabilities.

It took me years to understand why Newman loved being at the Hole in the Wall Gang Camp. It was for precisely the same reason these kids did. When the campers showed up, they became regular kids, despite the catheters and wheelchairs and prosthetic legs. And when Newman showed up, he was a regular guy with blue eyes, despite the Oscar and the racecars and the burgeoning marinara empire.

Goodness knows kids with autism — and their parents — know what it’s like to be stared at in public for being “different.” I can’t even see them, but I feel it — people often stare at me when I’m out and about with my Seeing Eye dog. I try to hold my head high regardless. Now, feeling this connection to the great Paul Newman, that will be easier to do!

No debating this one: the Combating Autism Act was a great first step

by Patricia Wright

The first presidential debate is scheduled for tonight, and all the talk about whether or not Sen. John McCain (R – AZ) will actually show up got me thinking of that post I wrote about McCain and Obama’s positions on autism.

A number of people commented to that post, one pointing out that I had neglected to mention that McCain was one of 48 senators to co-sponsor the Combating Autism Act of 2006. Vice-presidential candidate Sen. Joseph Biden (D-DE) also co-sponsored the bill, and it passed in the Senate by Unanimous Consent.

Passage of the Combating Autism Act was a great first step. Now I’m waiting to see the outcome, and senatorial support, for the Expanding the Promises for Individuals with Autism Act. If you are interested in supporting this legislation, the Easter Seals Office of Public Affairs has a letter of support you can use as a model.

The theme for tonight’s debate is supposed to be “Foreign policy and national security.” Since Senator McCain’s change of heart, however, I’ve heard rumors they might switch the theme to “National Economy.” Either way, I’m not anticipating any discussion of autism legislation tonight. Still, I’ll be hanging on every word — I’m watching the debate at the Chicago History Museum. There’ll be a panel discussion on foreign policy, and then we’ll stay to watch the debate on a big-screen TV afterwards.

If the debate happens, that is. I hope it does — it’s important to me to hear different perspectives. That’s why I love all those comments you blog readers leave on my posts!