People with autism are lifelong learners

by Michael Pelfini

You probably know that guest blogger Laura Shumaker published a post here last week about our Easter Seals Bay Area Autism Community Forum. What you may not know is that Shumaker also wrote an article for the San Francisco Chronicle about the forum.

Laura Shumaker is the mother of a 23-year-old son living with autism and author of a book called “A Regular Guy: Growing Up with Autism.” In her article, Laura walks readers through the experience that she and her husband had in trying to get the best treatments available for their son Matthew when he was five years old.

That’s when we learned about the Lovaas Model of intensive behavior intervention, a highly structured program that used positive reinforcements to reward appropriate behavior. The treatment was administered five to seven days a week with one-on-one tutors. Each session lasted from five to seven hours, totaling an average of 35-40 hours per week — a huge commitment and very expensive. (The program has evolved into the more accessible ABA.)

We read that “a large minority” of children who received the treatment were able to achieve normal educational and intellectual functioning by 7 years of age.

“Matthew’s a little too old for this therapy,” we were told, “The ideal window for the Lovaas method is between the ages of 3 and 6.”

Enter Easter Seals, says Shumaker. She attended the Easter Seals Bay Area Autism Forum and was able to speak with both Patricia Wright and Matt McAlear about what is currently available for children and families affected by autism.

“Things sure have changed,” says Matt McAlear, Vice President and Chief Program Officer of Easter Seals Bay Area. “Now we know that people with autism of all ages are capable of making significant progress through personalized interventions and therapy. They are capable of leading fulfilling lives.”

It’s an article worth reading. I especially like the title: Autism: is there life beyond early intervention? Easter Seals says yes.

The Texas snow couldn’t stop us!

by Jennifer Friesen

The Easter Seals Autism Spokespersons Network and Affiliate Marketing Partners met in Dallas last month during a record-breaking snowfall. Although 12 inches of snow was falling outside, the group of 50 experts joined Texas legislators and other members of the Easter Seals North Texas (ESNT) autism community to make the trek to ESNT’s Trinity Center in Carrollton, Texas.

The members of the Autism Spokesperson Network are autism experts and therapists who work in markets across the country providing help, hope and answers to children and adults living with autism. Each of us is a strong media resource and interview subject to include in discussions, news segments and features about autism … and each of us is happy to open doors for visits to local centers and introductions to families involved in autism treatments.

The spokespeople who visited in February were especially interested in hearing about our partnership with the University of North Texas and learning about our Autism Treatment Program (ATP). I, along with Nicole Zeug (ATP Program Manager) and Dr. Shahla Ala’i-Rosales (Department of Behavior Analysis at the University of North Texas) gave a presentation about the program. We shared information about the program design and systematic procedures, and then we got to the best part: the client stories.

One client started our program about nine months ago. Before he began receiving Applied Behavioral Analysis intervention, his language was extremely limited. When it came to meals, he only ate pizza, chocolate chip cookies, and limited types of dry cereal. Now, after receiving about 20 hours of direct intervention each week, he is talking in full sentences, asking and answering questions, and eating a variety of fruits, vegetables, and proteins. This client’s mother talked with the Spokesperson Network members, conveying a message of hope to families and encouraging families to seek the sort of help and support she found through the Autism Treatment Program here at Easter Seals North Texas.

We at Easter Seals North Texas feel so fortunate to have a program that is able to help families affected by autism. The Autism Spokespersons Network and Affiliate Marketing Partners make an impressive group. We were proud to host such professional, compassionate, and knowledgeable people from across the country.

It’s never too late to learn as we grow

by Matt McAlear

One of my favorite things about living in San Francisco (other than the weather — sorry East Coasters!) is the people that make up our city. Our population is made up of dynamic, intelligent and progressive thinking individuals. It’s my pleasure to introduce to you one of those people … and today’s guest blogger, Laura Shumaker. Laura is a writer for the San Francisco Chronicle, mother of a young man living with autism and author of a book called “A Regular Guy: Growing Up with Autism.” Laura has become a great friend of Easter Seals Bay Area — enjoy reading!

Learning as we grow
by Laura Shumaker

When my husband and I suspected that our 3-year-old son Matthew might have autism, we believed we could “nip it in the bud,” but we had no idea how. Our pediatrician didn’t have a clear idea, either, so we bombarded Matthew with speech therapy, play therapy, auditory training therapy (because it cured that girl on Oprah), and countless other therapies that didn’t make any sense. We felt like we had to do something in a hurry before Matthew was ready to start school and real autism “set in.” By the time Matthew was 5 years old, though, we could see that we hadn’t done enough.

I was reminded of our cockeyed view of autism when I attended the Easter Seals Bay Area Autism Community Forum in Oakland last month. The message of the forum — that people with autism of all ages are capable of making significant progress through the lifespan — was an epiphany for me. Matthew is 23 years old now and making progress, but until I went to the Autism Community Forum last month, I still believed early intervention was the only real time treatment that mattered.

In her keynote, the wonderful Patricia Wright, National Director of Autism Services for Easter Seals, told me just how wrong I was about that. In her speech, Dr. Wright talked about her passion for providing evidence-based treatment for individuals with autism through the lifespan. She said that families, educators and service providers can be bombarded by a massive amount of confusing and sometimes conflicting information about the countless treatments available.

Amen!

Patricia told us that the National Autism Center had recently completed an unprecedented multi-year project — the National Standards Project — to establish a set of standards for effective, research-validated educational and behavioral interventions for children on the spectrum. These standards identify treatments that effectively target the core symptoms of autism spectrum disorders.

I could have used the results of this project all those years ago. I remember feeling guilty when I didn’t try every single treatment that came along. Now parents have a reference point that they can trust. The National Professional Development Center on Autism Spectrum Disorders is another organization that promotes the use of evidence-based practice for children and adolescents with autism spectrum. They provide professional development to teachers and practitioners who serve individuals with autism from birth to age 22.

It’s hard to teach a tired and brainwashed mom new tricks. All these resources and I still couldn’t help but wonder what the best treatment for autism is. “When we talk about treatment for individuals with autism spectrum disorders through the lifespan, we’re not just talking about therapy treatments,” Dr. Wright said, shaking me by the shoulders (not really, but I’m sure she would have liked to). Patricia explained that “lifespan” includes providing job supports and development as treatment. Building social skills and assisting with appropriate interaction in the break room is treatment. Anything that helps individuals lead fulfilling lives is a necessary component of treatment.

I get it now. Thank you, Easter Seals!

General Mills joins Food Lion in helping Easter Seals

by Beth Finke

Good news! Food Lion’s Shop&Care campaign doesn’t end until Tuesday, March 9th. That means you still have time to shop at Food Lion, save money and help children with autism and disabilities get a healthy start.

For nearly a month now, cashiers at Food lion, Bloom, Bottom Dollar Food and Reid’s have been asking customers to join them in supporting Easter Seals by giving a donation at checkout. If you hurry in this week, you can join the others who have donated $1.00 and posted their name on an Easter Seals Shop&Care hang tag.

And while you’re shopping at Food Lion, here’s another way you can help Easter Seals. General Mills has produced specialShop&Care co-branded packages for four of their cereal brands: Cheerios, Honey Nut Cheerios, Cinnamon Toast Crunch and Lucky Charms. If you buy any two of these specially marked Shop&Care cereals, General Mills will make a donation to Easter Seals.

General Mills is a long-standing supporter of Shop&Care, contributing more than $1 million to Easter Seals since 1991. This is the fourth year General Mills has created these special cereal boxes for Easter Seals. A hearty thanks to General Mills, Food Lion and you, their customers! Together you’re helping children with autism and disabilities get a healthy start.

We love the ‘Dallas Moms’ Blog

by Beth Finke

Hats off to the Dallas Moms Blog for its post about the Easter Seals Autism Spokespersons Network (ASN) meeting in Dallas last month.

Easter Seals is the nation’s leading non-profit provider of services for individuals with autism and other disabilities, and the Dallas Moms Blog explains why it is so important that we get word out to those who need our services.

Many people in our society today may not know that Easter Seals has been a great source of information, services and support for families living with various disabilities for nearly a century. With the sharp increase in Autism diagnoses over the past two decades, Easter Seals astutely recognized the critical need for quality treatments for young children, on-going support for families and continued services for adolescents, young adults and grown men and women living with Autism Spectrum Disorders (ASD). Not only does Easter Seals work “nationally to provide children and adults with autism individualized treatment plans and comprehensive services,” they also advocate in our nation’s capital for increased research financing. Their motto is basically that any person living with an ASD, no matter the age at diagnosis, is capable of tremendous progress through individualized therapies and interventions so that they may lead meaningful lives.

The author of the poast, Leigh Attaway Wilcox, has a son with Asperger’s Syndrome. She sat on a panel at the Autism Spokespersons Network meeting last month, where Easter Seals Autism Spokespersons Network and Affiliate Marketing Partners met in snowy Dallas to network, brainstorm and share ideas of ways to let people know about Easter Seals’ extensive array of autism services. Dallas Moms Blog Administrator, Healthy Living writer and Dallas Morning News columnist Nancy Churnin was also on the panel

The group of experts Nancy and I met last week are proactive, devoted people focused on spreading the word that Autism is treatable and that Easter Seals might be a good place for families to find help. Their questions for Nancy centered around professionally approaching members of the media to effectively utilize the mainstream media to share information about ASD across the nation.

Nancy graciously shared information, including what a typical week might look like in her office at the Dallas Morning News. She also offered information regarding the kinds of things which have motivated her in the past to write about special needs topics in the Healthy Living section of the paper. I was personally asked to share tips and suggestions for blogging about special needs topics, with ASD front and center.

Members of the Autism Spokespersons Network must have been taking notes during that panel — since that meeting in Dallas we’ve published a post by ASN member Lisa Tate from Easter Seals Central Texas, one from ASN member Erin Rogers of Easter Seals Peoria & Bloomington-Normal, and one from Affiliate Marketing Partner Mike Pelfini of Easter Seals Bay Area. Keep your eye on the Easter Seals and autism blog for more posts from ASN members in the future.

Thoughts on the Wakefield study

by Lisa Tate

Those of us providing services to children with autism here at Easter Seals Central Texas often find ourselves working with families who are also receiving services from Thoughtful House, an autism center in Austin. Thoughtful House was founded by Andrew Wakefield, the doctor whose research triggered a health scare over the MMR vaccine in Britain.

A recent article in Time Magazine discredited his study; the MMR vaccine is now deemed to be safe. Medical authorities in the U.K. have also ruled that the manner in which Wakefield carried out his research was unethical.

Wakefield has resigned from Thoughtful House, and after hearing news of that resignation Dr. Arthur Kingsman (known for his evaluation and treatment of gastrointestinal pathology common in children with autism spectrum disorder) also resigned.

The recent Time Magazine article has served to bring the questions about vaccines back to the forefront of the minds of parents in our community. Questions continue to arise from families on a regular basis regarding any connection between vaccines and autism. As I stated in my blog in December, 2008, the questions regarding a connection between Autism and vaccines is still quite controversial and a topic of conversation with almost every family we encounter when an autism diagnosis is received.

Here’s something that is beyond question, until a cause is found, Easter Seals is dedicated to doing what we’ve always done — supporting people with autism and their families today by providing supports and services to those living with a diagnosis.

Share creative play tips … and you could win a $50 CVS gift card!

by Beth Finke

Our Easter Seals corporate partner CVS Caremark is teaming up with the popular disabilities blog, To the Max to ask parents to share the play games they come up with to help their kids with physical and speech challenges and delays. Share your tips in a comment on the To the Max blog by this Friday, February 26, and you could be one of ten commenters to receive a $50 CVS/Pharmacy gift card!

To the Max is written by the mother of a boy with cerebral palsy. The blog encourages other parents of special needs kids to try to see the light side of things, vent when necessary, and share resources and ideas with other parents.

CVS Caremark is working with To The Max as part of 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 autism and other 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.

So go ahead, leave your play tip on the To the Max blog. The ten winning comments will be selected at random — and hey, who wouldn’t love a $50 gift card to CVS?

Tell Congress: don’t freeze funding for early intervention!

by Katy Beh Neas

Earlier this month, President Obama sent a budget request to Congress that would freeze funding for early intervention programs for children with autism and other disabilities. Freezing these programs would have a major negative impact on the lives and futures of these children.

Children with autism and other disabilities need to be diagnosed early, and they need access to services as soon as possible. Rather than being frozen, the budget for vital early intervention programs should be increased.

Please write to your members of Congress today and make sure they know how important early intervention programs are for our nation’s children. Early intervention can make a world of difference in the life of a child living with autism or another disability.

Send a message to your representatives urging them to protect funding for early intervention programs.

Looking for hard evidence on P.L.A.Y. and Floortime

by Erin Rogers

Easter Seals Peoria & Bloomington-Normal is participating in a national research study with the Ann Arbor Center for Developmental Pediatrics through the National Institute of Mental Health (NIMH) . Our affiliate is excited to participate in this three-year study to determine the effectiveness of P.L.A.Y. and DIR Floortime intervention strategy designed to meet the intensive needs of children with autism spectrum disorders.

From a P.L.A.Y. press release:

Details of the study: With research-design guidance from Michigan State University, and community-outreach support from Easter Seals, The P.L.A.Y. Project is conducting a randomized, controlled, and blinded clinical trial. Drawing participants from five Easter Seals autism service locations, the study compares the outcomes of 60 children who participate in The P.L.A.Y. Project with the outcomes of 60 children who receive standard, community interventions, making it the largest study of its kind.

Throughout the last six years of providing P.L.A.Y. services, we have seen excellent results, not just in the progress of the children, but in the parent-child relationship as a whole. Our parents tell us that The P.L.A.Y. Project positively impacts their relationship with their child. Since participating in P.L.A.Y., their child gives them hugs and even seeks out their affection.

We’re excited to have the opportunity to participate in evidence related to this intervention, and look forward to continuing to provide help and hope for families living with autism.

Autism Community Forum rocks the house

by Michael Pelfini

Read Michael Pelfini’s biography.

On Friday, February 5, over 325 people convened at the Autism Community Forum in Oakland to hear experts speak about how we can meet the incredible needs of individuals with autism. Educators, parents, researchers, community leaders, private and public practitioners — we were all there to discuss the challenges of autism.

The filled-to-capacity event was testimony of the desire for quality information on the topic of autism. This was truly an inclusive event, drawing local, state and national experts. Speakers included:

• Louis Vismara, MD, Policy Consultant to California State Senator Darrell Steinberg,who gave an update on public policy and legislation related to Autism Spectrum Disorder in California.
• Patricia Wright, Ph.D., National Director of Autism Services for Easter Seals,who spoke on the value of identifying and using evidence-based therapies and treatments for children with autism.
• Bryna Siegel, Ph.D., Professor of Psychiatry and Autism Clinic Director, UCSF, who brought to light the most recent information available regarding the learning styles of children with autism.
• Marie Rocha, M.A., of the UC Davis M.I.N.D. Institute, who outlined the key elements of the Early Start Denver Model treatment methodology developed specifically for children with autism.

The forum confirmed that, while it is a lifelong disability, autism is treatable. People with autism can, and do, lead meaningful lives. It’s equally true that Autism is bigger than any one of us can handle alone. We’re all doing our best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need.

I’m reminded of the Gary Larson cartoon depicting Rex, the acrobatic dog who finds himself experiencing a moment of truth midway through his balancing act on the circus high wire. The caption reads: “High above the hushed crowd, Rex tried to remain focused. Still, he couldn’t shake one nagging thought … he was an old dog, and this was a new trick.”

We need to innovate. Our public, private, and social sectors can no longer afford to operate or relate to one another “business-as-usual.” And we need to act. That is why Easter Seals Bay Area is using inclusive child care, special education-related services , early diagnosis and intervention to meet the needs of individuals and families living with autism. We’re building and participating in coalitions throughout the Bay Area to address these issues and very clear needs. We are also delivering training opportunities specifically designed for school administrators, teachers, and others working with school-aged youth with autism.

And that’s not all! Through Easter Seals National Headquarters and the California statewide network of Easter Seals affiliates, we are talking with our Congressional and state legislators, who can make an enormous difference for families and young people living with autism.

Help, hope and answers … right now!