The National Autism Center has released a great resource to help parents and service providers. It’s called the National Standards Project, and it provides critical information about which treatments have been shown to be effective for individuals with ASD.

The project looked at the core characteristics of ASD in children, adolescents, and young adults (those below 22 years of age) and examined and quantified the level of research supporting interventions. Eleven treatments were found to have significant evidence.

The National Autism Center launched the National Standards Project in 2005. The project benefited from the support and guidance of an expert panel composed of nationally recognized scholars, researchers, and other leaders. The culmination of this rigorous multi-year project is the National Standards Report, the most comprehensive analysis available to date about treatments for children and adolescents with ASD.

The National Standards Project will provide guidance, encourage families and service providers to make informed decisions, and promote the use of evidence-based treatments. And with the implementation of these standards, our outcome will be citizens with autism who move into adulthood with increased skills and the ability to contribute their talents to our diverse communities.

Visit the National Autism Center Web site to access a copy of the report.

Last week Milwaukee Fox 6 TV featured an interview about our June 19 Walk With Me event.

The interview gave me an opportunity to spend some quality time with Stephanie Mayer and her son, Kyle. Kyle has autism, and he received a scholarship for inclusion in our P.L.A.Y. Project (Play and Language for Autistic Youngsters) last year.

We all had to wait over 30 minutes for the interview to begin, and Kyle was a pleasure to be with. He admitted he was a little nervous, and he held tight to his Buzz Light-Year and Woody toy for comfort. Eventually he cuddled next to his Mom and asked, “can I sit on your lap?”

Using cues from both P.L.A.Y. and new techniques from Applied Behavioral Analysis (ABA), Stephanie encouraged his positive behavior. You would never know the struggles the family had with Kyle just a couple years ago. I knew, though — and I was truly amazed at Kyle’s progress.

A number of months ago, the family allowed our P.L.A.Y. Consultant Amanda Dobberstein to share a few videos of Kyle. The first session showed Kyle playing with three sets of objects in less than a two minute segment. Kyle had his back to his Mom and little sister during the entire period. Kyle’s mom kept asking questions, trying to engage Kyle, but he was pre-occupied. No interaction, no warmth — just sharing a room, not sharing an experience.

Now, a year later he is cuddled up next to Mom with his toys in his lap using his “big boy voice.” Of course, moments before we headed to the studio, Kyle asked his mom, “can I go to the bathroom?” Mom answered, “not right now, dear.” Kyle waits. Patiently.

Throughout the interview Kyle sits quietly, the bright lights of TV shining in his eyes. Stephanie tells the audience how the Easter Seals autism Web site helped her realize Kyle’s need for services. What a great feeling it is to know we were there when he needed us.

Later that night, Kyle had over 30 people walk on his team at our Walk with Me event in Milwaukee. One of those walkers was Amanda Dobberstein, Kyle’s original P.L.A.Y. consultant. He and his Mom told nearly 400 walkers about the progress Kyle has made and how grateful they are to Easter Seals for providing the scholarship.

This was a day when all the pieces came together — years of planning, fundraising that resulted in a caring staff providing services that change a life. Kyle may need only limited services when he moves on to first grade next Fall because of the work of Easter Seals early on.

On a personal note, my daughter Molly tagged along to the interview. There she was, off to the side, clad in her Walk with Me tie-died t-shirt, hearing about what an impact the agency Daddy works for makes in someone’s life. She thought it was “totally cool” to meet Kyle and see a TV station. Hearing her say that Kyle is a lot like her little brother Tommy was another life lesson I was glad she gained that morning. And you know what? I thought it was “totally cool” to be at that TV station with Kyle and his mom, too.

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.

We started both these programs after hearing from members of the autism community about the services they felt they needed. Now we are considering what more we can do as a provider. Should we begin an ABA program? Develop new respite options for families and children with Autism? Maybe develop specialized pre-school programs for children with Autism? Maybe work training programs for young adults with Autism? How about developing outreach efforts so people understand what life with Autism is like?

We wrestle with some issues, too. Should children with Autism be with their typically-developing peers or should we provide specialized programs like a pre-school program? I am asking you, our friends in the Easter Seals blogosphere, to give us some feedback — we would love to hear from you. If you have a child with autism, what services does your family need and want? If you are an adult with Autism, are there services you need? Do you have a model you might suggest to us that has worked for your family? Your ideas will be invaluable in our plan to expand our services.

But that’s changing. Last October, the American Academy of Pediatrics recommended autism-specific screening at 18-month and 24-month doctor visits. Now more children are being diagnosed earlier on.

Here at Easter Seals Bay Area we’ve launched an Early Intervention Autism Program (EIAP) to specifically serve children 18 months through 3 years who are diagnosed on the autism spectrum. EIAP’s mission statement:

To provide empirically based interventions to young children aged 18 months to 3 years with autism and similar disabilities that will facilitate successful inclusion into the least restrictive environment.

The EIAP will provide best practices in the field of early intervention autism treatment by developing an approach that enables clinicians and families to choose from and use multiple treatment methodologies. This will be unique to a market of parents who, until now, have not been given a choice in regard to finding a treatment that will work for their child and family.

There is still much we do not know in the field of autism treatment, but we do know that through programs like the EIAP we can make many important contributions to the lives of many children and families affected by autism. As a society, we cannot afford to deliver anything but the most effective interventions to children with autism. Through programs like the EIAP, Easter Seals Bay Area is providing help, hope and answers for families living with autism today.

It’s true: autism is treatable! Just ask my friend Barbara Gaither. You might recognize Barbara’s name — she’s posted a few blogs here about her son Scottie, and today she’s sending an email message to Easter Seals friends to celebrate his progress.

Autism is treatable. Scottie is living proof of that. He has emerged from his dark world of isolation to become the engaging 2nd grader he is today, thanks in great part to Easter Seals.

Every day, Easter Seals provides personalized treatments that help people of all ages with autism lead meaningful and productive lives. We hope you’ll join in our efforts — Act for Autism and let people know about our programs and services.

Join us — Easter Seals acts for autism every day. We’re constantly finding and refining the best treatments, educating people about autism and advocating for government policies that support people with autism.

If you’re reading this blog, you’re someone who takes action. Please continue to do so! Act for Autism with Easter Seals today — start out Autism Awareness Month by making people aware that autism is treatable.

There are 16 states that require health insurance companies to cover therapies for autism. Our state of Wisconsin could join that list. A bill passed by the state senate awaits a decision in the Assembly and needs to be voted on by this Thursday, March 13 – when legislative sessions end.

After the Senate Bill (SB 178) passed with a vote of 25 to eight, Wisconsin realized that this is not an issue of democrats versus republicans — it’s a bipartisan issue with support from both sides of the aisle.

Gov. Jim Doyle, along with Senate and Assembly democrats and republicans, made a plea to the Assembly to at least hear this bill in session. Doyle remarked that Wisconsin families are not trying to get something for nothing with this legislation — hard working families who do their part and insure their families are just looking for the same coverage insurance companies give to so many other people with disabilities.

On February 28, supporters gathered at the state capital to rally the Assembly to take action. It was heart-breaking to hear the story of one family told by the grandparents of a young boy with autism. Their son, they said, works long hours to make sure he can provide for his family, including health insurance. But at the end of the day, there isn’t any more money to pay for autism therapy. And since their grandson is at the bottom of a two year waiting list for the Medicaid Waiver; other family members have been contributing money to help pay for some therapy.            

Families who have children with autism know that delivering treatment as early as possible gives children the best chance at life. But with the steep out-of-pocket costs and long waiting lists for state programs, Wisconsin families are looking for answers. 

Hopefully, the Assembly can provide them. Let Wisconsin legislators know how you feel about this issue — you can find their email addresses at the Wisconsin State Legislature
Web site.

Our society likes to have clear answers. When I meet people and tell them I work with children who have autism, one of the first questions they ask is “What causes it?”

Unfortunately, there isn’t a lot of clarity in the cause. It is a controversial and divisive issue.

There is a lot of knowledge, however, on effective supports for people with autism. With effective treatment, individuals with autism can lead meaningful, productive and happy lives. Until there’s a cure, there’s Easter Seals — we will continue helping families and children in the struggles they face with a diagnosis of autism as early as we can.

Right now, the state of Wisconsin offers several ABA (applied behavior analysis) programs but few relationship-based programs. In October 2006, Carrie Cianciola, Early Intervention Services Director, and Amanda Dobberstein, Speech Pathologist and P.L.A.Y. consultant, attended Dr. Solomon’s intense, four-day training. Our staff returned to Wisconsin excited to implement techniques and train parents!

Since attending the training, Amanda has been using The P.L.A.Y. Project model with families and seen its benefits first hand. Parents are reporting that their children now go to them for affection and requests to play.

So, you can imagine how excited Easter Seals Southeast Wisconsin is to be hosting Dr. Solomon this weekend — he will present his two-day workshop for parents and professionals about The P.L.A.Y. Project on March 7-8 in Waukesha, a Milwaukee suburb.

If you’ve never seen Dr. Solomon present and you can make it to the Milwaukee area this weekend, please come and visit!

For more information, contact Carrie Cianciola at 414-449-4444 ext. 212, or download the registration flyer (pdf).

So, enough of the self-adulation and on to more interesting matters — the Autism Spokesperson Network consists of a group of Easter Seals individuals from all over the country.

These Easter Seals autism experts and marketing professionals are meeting for the next two days in Chicago. They’ll work together with Easter Seals’ partner, the Autism Society of America (ASA), to create new ways to build interest in autism as a cause and educate the public about autism.

The group will discuss the many treatment options available and how people with autism can make significant progress and lead independent lives. In short, they’ll discuss how there is hope for families living with autism.

Throughout the year, members of the Autism Spokesperson Network will post their observations, ideas and comments about autism services here on the Easter Seals and Autism blog. It’ll be terrific to hear new voices on the blog — and what a relief from the blogging blind boasts!