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!

President signs ADA Amendments Act!

by Beth Finke

I’m afraid that with all the economic upheaval in the news, something important might go largely unnoticed this morning. President Bush just signed the ADA Amendments Act into law! The requirements of the new law will become effective January 1, 2009.

In-between its stories of the bail-out package and questions of whether or not the presidential debate is really going to happen tomorrow night, the Washington Post managed to squeeze in an editorial about this new legislation:

The legislation is the result of two years of remarkable cooperation between business groups and disability rights organizations. The compromise strikes a balance as it guarantees rights for workers with “actual or perceived impairments.” For example, airlines can no longer discriminate against prospective pilots if the applicants employ “mitigating measures,” such as corrective eyewear. At the same time, the bill limits unwarranted claims by requiring that workers prove they have a disability that “would substantially limit a major life activity when active.” The bill will also provide protection, for the first time, to workers with serious ailments such as diabetes, epilepsy and cancer.

Book Review: Celeste Shally’s “Since We’re Friends: An Autism Picture Book”

by Erin Rogers

Last night my kids and I read Since We’re Friends: An Autism Picture Book by Celeste Shally (with a Foreword by Alison Singer of Autism Speaks).

Reading the book reminds me how important it is that we educate our “neuro-typical” kids about autism. Whether we realize it or not, they are encountering children with autism on a daily basis in their classrooms all over the country. Unfortunately, children living with an autism spectrum disorder are often misunderstood by their peers. Without education regarding characteristics of autism and ways they can help friends in their class, children really don’t know what to do.

Since We’re Friends does a nice job of using a story to explain common behaviors of kids with autism and then demonstrating ways other kids can be helpful. This is a great book for every K-4 classroom!

Call me a dork, but I love autism conferences

by Matt McAlear

Call me a dork, but one of the favorite parts of my work is going to trainings and conferences on autism treatment. We are very lucky to have really exciting research happening within our university system here in California — two conferences I’ve been to lately highlighted pioneering treatments in the field.

The first was through the U.C. Davis M.I.N.D. Institute — it highlighted the Early Start Denver Model (ESDM). Next was training on Pivotal Response Training (PRT) at U.C. Santa Barbara’s Koegel Autism Center.

I’m a big proponent of “using what works” for autism treatment, so ESDM and PRT have always interested me. Both fuse traditional Applied Behavior Analysis principles with naturalistic, developmental approaches, and both address the following “pivotal areas:

• natural learning opportunities
• motivation
• child choices
• initiations
• self regulation

Both of these approaches just make sense — don’t we all respond better when we are calm, motivated and are given a choice? In a field ripe with controversy over what works and what doesn’t, it is refreshing to see models that not only focus on the individuals being served, but also acknowledge the fact that there is no single effective treatment for all individuals.

Our Early Intervention Autism Project at Easter Seals Bay Area and similar Easter Seals programs across the country are always looking for empirically-based, innovative programs. PRT and ESDM are both rich with empirical evidence and are on the cutting edge of research. With best practice becoming common practice, the future of autism treatment looks bright.

Vacationing with autism: bypassing the roadblocks

by Beth Finke

Our family went on some pretty great vacations with Gus when he was little. Other vacations, not so great. Take the time we drove 150 miles to go to a Prince concert. We all loved the concert, but Gus was so stimulated by the music that he couldn’t settle down afterwards in our hotel room. Gus screamed. And screamed. And screamed. The front desk called. Neighboring rooms were complaining. One caller worried that a child was being abused in our room. It was miserable. With all the wonderful vacations we took with Gus — weeklong trips to the ocean, a flight to Germany to visit my sister and her family (a niece came along to help us with Gus) — the one that sticks out in my mind is that miserable overnight after Prince. So I was happy to find that the travel section of Sunday’s New York Times featured an article highlighting tours and travel agencies catering to the needs of families with autism

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While most people look forward to a vacation with its new vistas, surroundings, food and routines, many families traveling with children with autism face a daunting task of providing some well-established routines to help their child feel secure. Long lines, masses of travelers, new schedules for eating and sleeping can throw off their child and make the trip less than relaxing.

The article chronicles families on cruises and at resorts where the destinations have made accommodations for children with autism. It also points out that Americans with all sorts of disabilities are vacationing in record numbers

Yet for every parent who decides they’re better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who are determined to hit the road, particularly if there are nonautistic siblings in the equation. And with Americans who have disabilities spending $13.6 billion annually on travel in the United States (not including the caregivers and family members who often accompany such individuals), according to a 2005 Harris Interactive poll for the Open Doors Organization, a small but growing number of tour operators, travel agents and resorts are offering specially geared getaways.

Congrats to the resorts and hotels who are wise enough to go out of their way to educate themselves and their staff about autism. Goodness knows our families need vacations as much — or more — as any other family does!