Currently there are three categorical labels used in diagnostics:

• Autistic Disorder
• Asperger Syndrome
• Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

The diagnosis of Asperger Syndrome requires an individual to have an I.Q. at or above the typical level and ensures that they developed language within the typical developmental time-frame. A recent article in the New York Times reported Asperger Syndrome may be changing with the Diagnostic and Statistic Manual of Mental Disorders (DSM) scheduled for release in 2012. Why is this important? Because a label is what provides access to services in our society.

Social service agencies limit access to services via labels. Many people with the Asperger label are unable to access services and supports. Many social service agencies limit their support to people with Autistic Disorder or to those with a co-occurring intellectual disability. A person diagnosed with Asperger Syndrome would not qualify.

Current assessments cannot accurately discern the difference between Asperger’s and the other two labels (Autistic and PDD-NOS). If the assessment cannot accurately discern the difference, then how good is the label? And if the label is not accurate, then should society be using the label to limit access to services?

The new DSM is reported to use the term Autism Spectrum Disorder and then utilize a severity scale within the diagnosis. Ideally the use of the severity scale will allow each person to be assessed for their unique areas of strength and areas of need. Services and supports can be individualized and person-centered. Individuals may then get the services and supports needed to experience success in life. This should be the purpose of a label.

Safeway executives unveiled the 2009 Safeway Foundation’s Empowerment Grant award winners during Easter Seals’ annual convention in Washington, D.C., granting $1 million to expand programs across the country that measurably improve access to services and outcomes for children and adults living with autism and other disabilities.

Now in its second year, the 2009 Safeway Foundation’s Empowerment Grants are awarded to Easter Seals affiliates across the country whose innovative programming truly makes a difference in the lives of people with disabilities, whether through autism services, employment support, inclusive child care, early intervention, medical rehabilitation or respite.

You might remember the post I wrote about Safeway last may, where I mentioned their long-standing commitment to hiring people with disabilities:

Safeway employs more than 10,000 adults with disabilities. You read that right. They hire more than 10,000 adults with disabilities. There are over 1,700 Safeway stores across the United States and Canada, operating under various brand names 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). Look around the next time you are shopping at one of these stores — it’s likely you’ll find an employee there with a disability. What a welcome sight!

I can tell you firsthand — when you have a disability, it is extremely difficult to convince employers to hire you. Safeway’s commitment has given many adults with autism and other disabilities a career and a means to live independently. Now these new 2009 Safeway Foundation Empowerment Grant awards will support Easter Seals local programs, which will help us reach more families living with disabilities.

I’ve said it before, and I’ll say it again: Thank you Safeway!

This was a special night for Easter Seals Southeast Wisconsin, as we were publicly announcing our merger with Waukesha Training Center. I was so grateful Maurice spoke after I did. Everyone knows there’s no topping Maurice’s inspiring personal story.

Maurice has autism, and when he was a child the system very often considered institutionalizing children with his symptoms. In his speech, Maurice shared his life and a tale of his personal strength, devoted family and the help of Easter Seals Metropolitan Chicago. Today Maurice is a college graduate, and I actually heard a gasp of surprise from the audience as Maurice shared the story of earning that degree. When Maurice’s talk drew to a close, the audience gave him a standing ovation.

Maurice’s personal story spoke to one aspect of our merger, bringing together an array of services:

• Early intervention
• Work services
• Case management
• Adult day and recreation

Families seeking help, hope and answers will find resources and support at Easter Seals. Maurice’s story also speaks to the need for a continuum of services across the lifespan, to give people with all types of disabilities more opportunities for inclusion, access to services, careers and most importantly, choices in their futures!

Thanks, Maurice, for coming to Milwaukee! We want to bring you back to share your story with our work services participants so they can start dreaming of their futures too.

We’ll be visiting our legislators and asking them to support health care legislation that includes:

• Coverage for pre-existing conditions, guaranteed coverage renewal, and no annual or lifetime caps.
• Benefits like rehabilitative and habilitative services, medical equipment and devices, and mental health services.
• Affordability provisions, so that all people, including those with disabilities, can receive the health care they need to live, learn, work, and play in their communities.

Send a message to Congress voicing your support, and help reinforce Easter Seals’ message as we head to Capitol Hill to meet with legislators.

And make sure you get our updates during our Capitol Hill Day! Join us on Facebook and Twitter. And if you’re already on Twitter, help us spread the word by tweeting about Easter Seals Capitol Hill Day by using the #CapHill09 hashtag.

Together, I know we can make our message to Congress heard loud and clear!

The law is scheduled to take effect in February, 2010. Under the legislation, insurance companies will be required to provide up to $36,000 a year for medically-necessary behavioral early intervention for all patients with autism, and with other developmental disabilities, who are under 21 years of age. New Jersey health insurers would provide diagnostic coverage for screening for autism and other developmental disabilities.

The mandate also includes therapeutic services, including any medically-necessary occupational, physical and speech therapy. The law provides up to $36,000 a year, per child, for behavioral, speech, and occupational therapy. Of 15 states with similar requirements, New Jersey is the first to include coverage for other developmental disabilities, too.

This new legislation has autism on people’s minds. I recently attended a political rally where I felt like I was at an autism advocacy rally! A lot of people were talking about autism. I heard more talk about autism at that rally than I have ever heard at a non-autism event. The speakers, the folks at my table (whom I had just met), municipal officials, school board officials, state and county officials, the candidates … everyone was talking about the importance of New Jersey making the diagnosis and treatment of autism spectrum disorders a top priority.

That rally was one of those rare times when I witnessed my professional and personal values mesh with my vision — governing leaders were ensuring that all people are included, and that supports are provided to achieve that goal.

A publication in Pediatrics indicates that 1 in 91 children between the ages of 3 and 17 has an autism spectrum disorder. The story in Pediatrics came out of a report from the National Survey of Children’s Health, and it indicates a clear increase from the 2007 research that found as many as 1 in 150 children had an autism spectrum disorder.

The news of this increase has many people asking why. As for me, I am asking what. What will we do to meet the increased need for services? What will we do to meet the increased need for supports?

Surveillance studies are important. They inform our society about what is happening to our population, and they should inform our society about the needs of our society members. Every day Easter Seals hears from parents who are not able to access services and supports for their children. The two barriers I hear about most often from families are financial barriers and the lack of trained professionals in their communities.

Individuals with autism can and do lead meaningful lives with effective services and supports. Increased prevalence equals increased need. The research has been done. We know that there are more children with autism. This must lead to the logical conclusion that there are more children in need of services and supports.

Remove the barriers to effective services and supports. Our professionals (teachers, childcare workers and therapists) need access to training. Our families need financial support to ensure their children receive quality treatment. Our society funded the prevalence study to find out about how many children have autism. Let us now fund services and supports to meet the needs of those we found.

ABA at Easter Seals Southeast Wisconsin
by Paul Messling

Several months ago I received a forwarded email from my former graduate school advisor at the University of Wisconsin – Milwaukee. He thought a job opening at Easter Seals Southeast Wisconsin might be right up my alley. After reading the posting for Autism Services Manager, I printed it out and left it for my wife to read. Her response, scrawled in bold letters across the top of the page, was WHAT ARE YOU WAITING FOR? Not being one to argue, my resume went out shortly after that.

Upon reflection, I guess I had already been waiting over eight years for this opportunity. After completing my undergraduate degree in psychology, I finally found direction in 2001 when I began working for a local autism services provider. After receiving a Masters Degree in behavior analysis, I got my Board Certified Behavior Analyst (BCBA) credentials in 2005.

The minute I arrived for my interview at Easter Seals Southeast Wisconsin I really felt the kind of pioneering spirit I was looking for. The opportunity to build a new program based upon Easter Seals longstanding tradition of community service left me in awe.

So where does this leave us now? Fortunately in Wisconsin we have a state-funded program that provides some resources for autism treatment. Marketing strategies and materials are being developed, referral sources are being sought out, grants ideas are being developed for teaching materials, and we are preparing to hire our first therapists in the near future. Once that occurs our program will focus on the Verbal Behavior Approach to ABA and errorless teaching with a special emphasis on therapist and caregiver training using video feedback.

I am very grateful to have this opportunity with Easter Seals. In a brief period I’ve already seen this organization’s unwavering commitment to helping individuals with disabilities. I look forward to translating that sentiment into services for children on the autism spectrum in Wisconsin, so each family we meet leaves better for the experience.

Easter Seals Central and Southeast Ohio – Excellent!
by Rob DuVall

Over the past four years, the adult services program here at Easter Seals Central and Southeast Ohio has been working on upgrading all of our services to help serve our clients better. Through grants with community partners, we are now working to update one of the buildings that will be used to help people with autism.

When the center began in the early 1990s, our main focus was providing medical assistance to adults with profound needs. Now our center has been able to transition into providing social experiences for our clients — outings in the park, festivals, visits to the gym, even a trip to a horse farm!

Easter Seals headquarters has recognized our center with Easter Seals Center of Excellence status. We are pleased to be recognized in this way. The excellence status is a nice way to let all our families know we’re going above and beyond to make sure their loved ones are taken care of.

Lose the training wheels, and gain your independence
By Candy Porter

Last month I had the privilege of observing the opening and closing ceremonies of the Lose The Training Wheels camp here at Easter Seals Crossroads. An article about our Lose the Training Wheels camp appeared at About Special Kids (ASK), a parent-to-parent Web site and resource for Indiana families with children who have special needs. The article described our program like this:

Children ages 8 to 18 with disabilities (such as autism, developmental delays, Down syndrome and cerebral palsy) are taught how to ride and transition to a conventional bike within a five-day period. The program utilizes adapted bikes and techniques developed by Dr. Richard Klein, a retired professor of mechanical engineering from the University of Illinois.

Think back to when you mastered a two-wheel bicycle — do you remember the time and place? I do — and that was over 55 years ago! What a life changing, growing experience it was. I have a feeling that it was even more so for our young riders.

I saw wobbly kids, scared kids and reluctant kids evolve overnight into successful kids, proud and confident. Better put: I saw earthbound caterpillars turn into soaring butterflies. What a joy — and privilege — to behold.

Along with other Easter Seals affiliate and national staff members who handle state government relations, I networked with state legislators, learned about the issues facing my state legislators, and educated legislators and their staff on issues facing Easter Seals.

I also wear the “autism spokesperson” hat for Easter Seals New Jersey, so I participated in a session for legislators called Autism Spectrum Disorders: State and Federal Policy Trends. The session was sponsored jointly by Easter Seals and the Association of University Centers on Disabilities (AUCD).

Our session began with George Jesien, executive director of AUCD, and Jennifer Bogin, project manager for AUCD, who discussed research, education and services for individuals with ASD. They were followed by Denise Rozell, assistant vice president for state government relations for Easter Seals. Denise detailed what’s new with state legislators and encouraged them to link to our 2009 State Autism Profiles. The profiles provide factual, objective descriptions of what the 50 states, D.C. and Puerto Rico are doing for people with autism.

After Denise, Pennsylvania Representative Dennis O’Brien and Maryland Representative Kirill Reznik captivated the audience with stories of how they advocate for people with autism. And then it was our turn: Charlie Briggs, assistant vice president of adult and community services for Easter Seals Goodwill Northern Rocky Mountain and I were prepared to discuss our state’s accomplishments and share some personal stories. The reason I say “were prepared” is that the session ran long. By the time Charlie and I were supposed to speak, attending legislators and their staff needed to get on their way to the next event. Bill Gates was presenting immediately following our session! And while fans of Charlie and me would agree that we are two of the most engaging and amazing speakers, we recognized that we are not the great Gates. We let our fans move on.

What I had wanted to share with the audience was my viewpoint as a parent of a child with ASD — to help them understand why all of this matters. Two of the speakers had discussed “the cliff,” the feeling that many families experience when their child with autism turns 21 and the scope of services changes dramatically (for the worse).

My son is only 12 so I haven’t seen that particular cliff yet. But trust me, I’ve had many hair-raising experiences already with other cliffs. I’ve been on the edge, frustrated by the lack of available services my son desperately needed. That feeling is something you never forget. You want to give up and jump off. And, sometimes, you want to push someone else off with you while you’re at it!

I’m a resourceful person with a graduate degree in special education. I have a lifetime worth of contacts and experiences with supporting people with disabilities. I’m a blessed person surrounded by friends, family and colleagues who would all do whatever was necessary to help my son and me. I have a roof, a job and health insurance. But I still couldn’t find the services that would meet my son’s needs. If I can stand on the edge of that cliff and consider how much easier it would be to give up, one can only imagine what it’s like to be in a more challenging situation.

Whether you are a legislator, a friend, a supporter, a fan, a family member, or someone with ASD, you can’t ever give up. You can’t let the cliff get the best of you. Resisting the urge to jump can make you stronger. Let the cliff make the best of you, use your strength to give it all you have — ensure that people with ASD all over this country get the services they need. If we work together, maybe fewer people will end up living on the edge.