Celebrities cross a line when they suggest therapies

by Debbie Smith

A story in USA Today asks whether or not celebrities are crossing a line when suggesting therapies for fans. The article says doctors and public health groups say they struggle over the best way to respond to celebrity claims.

Many doctors say they’re troubled by stars who cross the line from sharing their stories to championing questionable or even dangerous medical advice.

This hits such a nerve with me in so many ways. I applaud celebrities that support causes and want to help out, but it crosses the line with me when they want to give advice or tell individuals how they should live their lives or provide treatment to their own family members. The article says that maybe we get “comfort” knowing celebrities have medical issues, too, but I’m not so sure about that.

“It helps people to realize that health problems they have affect even celebrities,” says pediatrician Aaron Carroll, director of Indiana University’s Center for Health Policy and Professionalism Research. “Knowing that a rich and famous person can have the same problem as you or me makes it seem more fair, maybe.

“It also can make it easier to talk about your own problem, because a celebrity has the same issue.”

Celebrities have access to more funds and a wider array of resources than the general public, so to state that their circumstances are similar is far from equal. Celebrities have a host of others to support them when they are raising any child, but then, a child with special needs, well, they can afford the additional resources and time to implement a new fangled diet or whatever. Was it the diet that helped the child, or was it all the attention given to the structure that has been added to the child’s life that did the trick?

Each individual diagnosis of autism is an individual diagnosis of autism. Not all children have the exact same needs. There are so many other variables. What scares me is that parents are so eager for a solution that they will read these celebrity endorsements and follow their advice without medical intervention and then possibly cause greater problems for their child, either medical or behavioral. This makes it even harder for treatment professionals to really assist the family, creating a cycle of confusion/disillusionment and frustration for the parents and the child.

A case in point — the article calls out Jenny McCarthy and all of the attention she has received:

Actress Jenny McCarthy, who has an autistic son, has written several books linking autism with childhood vaccinations, even though a host of scientific studies show that vaccines are safe and not the cause of increasing autism rates.

Celebrities are not professionals, and if they truly understood autism they would not be making such broad statements.

Again, I think it is great for celebrities to be engaged in awareness campaigns, but treatment campaigns … no. They are causing more harm than good.

The great outdoors — inspired by Charlie

by Patricia Wright

A blogger I follow (and really like) is Kristina Chew. Dr. Chew is a Classics professor and the mother of a 12-year-old with autism. She blogged at My Son Has Autism/Autismland from 2006 to 2008, at Autismvox from 2006 to 2008, at Change.org from 2008 to 2009, and now she’s at We Go With Him.

And so, okay, she’s moved around a lot the past few years, but trust me, she’s worth keeping up with! Her willingness to provide a glimpse into her family is very generous, and her posts are typically insightful, sometimes heart breaking and always well written.

Dr. Chew frequently shares that her son Charlie has a great appreciation for the outdoors. For example, here’s a bit from a post she wrote for Change.org:

I like the idea of Charlie working on a farm. He likes being outdoors and the kind of work one does when gardening strikes me as combining many of the things he’s drawn to do.

And here’s one from a post she wrote for We Go With Him:

The ocean is the great equalizer for Charlie — he’s a 12-year-old boy first and foremost, diagnosed and diagnosis-less, straining for his independence and annoyed to no end to hear his parents placing limits and saying “be safe.”

Charlie is taller (far taller) than most of the children on the beach. When I see them, I can’t help thinking of my boy when he was all skinny limbs and clamored for us (both of us — this was when he was 6 and under) to carry him. Charlie was fascinated, absorbed, obsessed with the waves and quite reluctant to venture into them without Jim and me supporting him. Then we thought it’d be enough if Charlie could learn to hold onto his board and stay atop it. We knew we’d feel beyond joyous if could learn to swim so he could jump and splash in the waves like the other laughing kids around us.

Charlie did learn to swim, and that post features a photo of Charlie out in the waves while his mom and dad watch from the shore.

Outdoor activities can include kayaking, bike riding and the beach, to mention just a few. From my days as a classroom teacher, I remember well many students who really appreciated their time outside of the classroom. Kristina Chew’s posts about Charlie’s love of nature have inspired me to do some research on organizations who have gone out of their way to meet the unique needs of individuals with autism — even in the great outdoors.

Look for my next post to find out about a forestry organization that has partnered with the Autism Society of North Carolina to increase the accessibility of their programs. Stay tuned!

Autism Dog Blog

by Beth Finke

A lawyer named Matthew Stoloff keeps a blog about disability law that I check out from time to time. In his end-of-the-year post for 2009 — called The Year of the (Service) Dog — he links to some of the posts he’s written this year about children with autism and other disabilities bringing service dogs to school. Service Animals in the Schools provides readers with a list of objections to prepare for when administrators are leery about allowing service dogs in schools. A post called Are IEPs Necessary for Service Animals? mentions a case we blogged about this year. The case involves a child with autism here in Illinois who wants to bring his service dog to school. Among other things, the school district is arguing that the child cannot bring his service dog to school because it is not in the child’s Individualized Education Plan.

While I don’t always agree with Stoloff’s views, I always find his posts informative and full of links to go to for further information. He ends his Year of the (Service) Dog post with a prediction of what the new year has in store for service dogs:

Undoubtedly, more discussion, more debates, and possibly more litigation across the country regarding service animals. There will be more discussion about how to distinguish between service animals and companion pets. There will be more debates regarding whether exotic creatures can be trained to be service animals and whether dogs can “smell” an oncoming seizure or be trained to help autistic children from harming themselves. There will be more talk about whether service animals should be certified. We will likely see more service animals in the schools, on the streets, and in other places where the public is invited. This issue is not going away.

Here at the Easter Seals and Autism blog we’ll do our best to keep you posted. In the meantime…happy New Year!

Maurice rings in the new year

by Maurice Snell

As we prepare to celebrate the new year, I want to tell you about something special we did this month to close out 2009.On Friday, December 18, the folks at Easter Seals Metropolitan Chicago were hard at work raising money in the first annual Easter Seals radiothon. Citadel Talk WLS-AM/Chicago teamed up with Easter Seals Metropolitan Chicago to air a 13-hour radiothon to raise money and awareness. Award-winning host Pat Cassidy broadcast live from the phone bank located inside the Starbucks store at the Hotel Intercontinental, and People from Easter Seals Metropolitan Chicago volunteered their time answering lots of phone calls and taking pledges from many callers. The phones were ringing off the hook!

Cassidy featured local celebrities during the radiothon, he offered facts about autism, and he interviewed families affected by autism. I was fortunate enough to make my voice heard throughout the radiothon. I was interviewed by Pat Cassidy numerous times about this spectacular project we have going on at Easter Seals. My mission was to encourage those willing to donate their dollars towards a new therapeutic pool and fitness area for students and clients at the Therapeutic School and Center for Autism Research. My story of inspiration at Easter Seals encouraged thousands of callers to donate money to a worthy cause.

After that, I was willing to brave the elements of Chicago weather to encourage those outside the hotel to donate money, Salvation Army style. Which means I was Santa Claus, ringing a bell with a bucket for people to donate money. Sure it was cold along the Magnificent Mile, but we were fortunate to raise money needed for services.

In the end, we got on the radio to thank those who contributed in any way for Easter Seals. Cassidy also let listeners know that :

One hundred percent of the proceeds of the Radiothon will go to Easter Seals Therapeutic School and Center for Autism Research and related services. No administrative costs!

Thank you, WLS Radio. Happy New Year!

Kim Peek, Rain Man, brought autism into our consciousness

by Patricia Wright

Kim Peek died on December 19th. I was lucky enough to meet Mr. Peek once at an autism conference. He shared his story with the hundreds of attendees, and we left that session with incredible respect for how his gifted mind consumed information. We also felt like we had a little brush with fame, given his role in making such a famous movie.

Yes, that’s right – it was Kim Peek who inspired writer Barry Morrow, the author of Rain Man. The 1988 movie won four Academy Awards and helped put the word “autism” into everyday vocabulary.

Fran Peek said his son met Morrow at a convention in the early 1980s and the writer was taken with Peek’s knack for retaining everything he heard. Morrow wrote the script, and the movie went on to win an Oscar for Dustin Hoffman, whose repetitive rants about being an excellent driver and what time People’s Court would start were a hit with moviegoers.

Although the character was technically fictional, Fran Peek said his son was every bit as amazing as Hoffman’s portrayal of him. Kim’s true character showed when he toured the world, helping dispel misconceptions about mental disabilities. Rain Man was the first time many heard the word autism, and although media may not always portray individuals with autism accurately, media attention certainly contributes to awareness. Thanks to Mr. Peek and Mr. Hoffman, autism entered into the vocabulary of many. Mr. Peek was an amazing man, and one whose story brought the world of autism to the consciousness of the general public.

Christmas skating special includes message about Easter Seals

by Beth Finke

On Christmas Day this year, Amway Global and Disson Skating will present a special competition on NBC that adds a twist to standard figure skating. Amway Global Improv-Ice challenges figure skating superstars by having them skate on the fly to music they have not yet heard. The Amway Global Improv-Ice nationally televised special will air on Christmas Day from 3 to 5 p.m. ET on NBC and will be hosted by figure skating greats Kristi Yamaguchi and Brian Boitano. Olympic and World Champion figure skaters Nancy Kerrigan, Kurt Browning and Sasha Cohen will be among the stars doing the improvisational skating.

As a national partner of Easter Seals, and through their One by One campaign, Amway Global has included Easter Seals in television spots that will air during the Improv-Ice show on Friday. Since 1983, Amway Global and Amway Global Independent Business Owners have partnered with Easter Seals to support services to children and adults with autism and other disabilities. During this time, nearly $30 million has been contributed by Amway Global and Amway Global Independent Business Owners.

To help promote Friday’s show, figure skater Michael Weiss will appear on NBC’s Today Show and Kurt Browning will participate in a satellite radio tour, both on Christmas morning. The holiday show is all about the improvisation, and we at Easter Seals hope you’ll sit back and relax for a couple hours this Friday to enjoy this great entertainment. Merry Christmas!

Bubble wrap and tickles: playtime with autism

by Beth Finke

When our son Gus was little, the friends and family members we’d visit over the holidays weren’t always sure how to engage him in play. Gus liked to be touched, for example, but you had to approach and engage with him slowly.

If you’ll be visiting friends or families who have children with autism the next couple weeks, the Autism Society of America offers a list of suggestions for parents about engaging children in play, taken from “The Child With Autism” series by Kathy Labosh. Maybe a few of their tips (popping bubble wrap bubbles or using scarves to tickle, for example) will give you ideas of ways to engage the children with autism you’ll be visiting.

Tips of the Day — Playtime

• Cover the kitchen table with protective paper and let your child finger paint.
• Let your child paint with shaving cream in the bathtub.
• Bury small prizes in a box of dried beans or rice for your child to find.
• Fill an empty coffee can with dried beans for your child to shake.
• Hide trinkets inside a ball of clay or playdough for your child to find.
• Fill a dishpan with warm water and dishwashing bubbles and place outside; let your child splash and wash waterproof toys.
• To engage your child in play, walk toward her with your fingers wiggling to tickle her; chase her around the house until you catch her and tickle her.
• Make an art project with glitter and glue.
• Let your child pop the bubbles on bubble wrap using his hands, fingers and feet.
• Roll and bounce your child on a large exercise ball.
• Wrap your child in a blanket and have two people swing him.
• Use felt boards to illustrate stories; let your child place the people in the scene.
• To help your child prepare for activity transitions, warn him five to ten minutes before you change activities.
• To tickle your child, run scarves through her hands and around her neck.
• Let your child wave lightweight scarves; he will enjoy seeing the colors and fabrics move.
• Let your child show you what he wants by offering your hand and letting him take you where he wants to go.

Most of all … have fun!

Promoting Evidence-Base Practice

by Kathy Patrick

There’s a lot of “word on the street” about evidence-based practice and autism. Clearly this is an important topic, as people with autism should have access to effective services and supports. Peer-reviewed, published research informs evidence-based practice. Problem is, most providers in the autism field don’t devote time (or have access) to reading peer-reviewed research articles. Until now!

I am now participating in our Easter Seals Autism Research Review Group. The autism research review group meets approximately every two months to review a research article related to the topic of autism. The idea is to improve our research review skills and increase our ability to apply evidence-based practice into our daily work. Any Easter Seals staff member can register — to participate, members need to read the article before signing in on the call and make an attempt at completing the journal review sheet afterwards.

During the call we all answer questions related to the research — the purpose, subjects, setting, type of research, results, limitations, how to apply the research to our job, and so on. It’s an extremely supportive setting.

We had a pretty interesting discussion during our group call last week. We reviewed an article about an intervention used at a facility in England. The intervention had been used to address some significant challenging behaviors of a young man with autism. While it seems that the intervention produced noteworthy results, many of us on the call felt like the intervention was so far out of the box that it probably would not be acceptable in our work settings. The great thing about this group is that we all get a chance to talk about how the research relates to OUR work setting, and how we can apply what we are learning from the research into our daily work.

So, Easter Seals is helping to make the “word on the street” real for those of us in the field. There’s a lot of evidence about what works with people with autism, but until the field sorts out a way to translate this valuable research to the real world, people with autism won’t benefit from this vast knowledge.

Book review: Lisa Ackerson Lieberman’s “A ‘Stranger’ Among Us”

by Patricia Wright

Parents of children with autism often find themselves needing to hire a professional to work in their home and provide direct support for their child. Hiring and managing in-home care requires significant skills. Fortunately Lisa Ackerson Lieberman has developed a wonderful resource to guide parents in this process.

Ms. Lieberman has expertise as a social worker, plus she is a mom to a child with autism and has a partner who has a progressive physical disability. This multi-faceted perspective allows for meaningful content in all fourteen chapters and 191 pages of A Stranger Among Us: Hiring In-Home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences

Ms. Lieberman provides concrete examples and personal anecdotes to help make this book both practical and enjoyable. The book follows a fairly linear framework, starting with making a decision to hire care and choosing what type, finding and interviewing candidates, training and supervision and finally terminating an employee or ending the professional relationship.

I especially liked a chapter where Ms. Lieberman encourages parents to include their child in the hiring process. Every child needs to learn to make choices and direct their own life. By involving a child with autism in the hiring process (in an age and developmentally appropriate manner), that child begins to develop self-advocacy and self determination. Ms. Lieberman’s inclusion of this chapter is demonstrative of her desire to ensure that her own son with autism develops successfully. This includes meeting her son’s needs via appropriate care provision and ensuring her son is able to access important learning opportunities.

Ms. Lieberman has produced a great resource for families. For anyone faced with tough decisions — like why and how to provide in-home care for their family member with autism — A “Stranger” Among Us is a must-buy.

Holiday tips from autism experts

by Matt McAlear

When a local freelance writer named Dana Young decided to write a story offering holiday tips and advice to parents of kids with autism and other disabilities, she knew one place she could come to find experts: right here at Easter Seals Bay Area! Her finished story is called Special Joys, Special Challenges, and it’s in this month’s issue of Bay Area Parent. Not only does the story quote our clinical supervisor Michelle Ficcaglia, but it also quotes … me!

Matthew McAlear, the vice president and chief program officer for Easter Seals Bay Area, suggests using role-play to give children practice ahead of time in dealing with new social situations. He also suggests they work together with parents to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.

In the story, Michelle encourages parents to have their kids help plan for the trip themselves.

“Counting down a trip by marking off days on a calendar with your child is often very helpful,” says Michelle Ficcaglia, Ph.D., the clinical supervisor for the East Bay Autism Project. “Additionally, you can try to prepare your child for a plane, car or train ride by reading books about the mode of travel you will be using.”

I was very pleased with the published story. It features many other tips and ideas from Michelle and me, plus advice from other experts, too. As the author so wisely puts it: “Celebrating the season with special-needs children has its own set of challenges – as well as unique joys.”