I am the father of two wonderful kids, Molly and Tommy, and I know the worries all parents have, the dreams we have for our children and the fearful moments. Will they fit in with the other kids at school? Are they getting good grades? Am I bringing them up right? I heard a good quote recently, that the good parents are always asking themselves, “Am I doing the right thing for my child?”

I’m not sure how to conclude this blog post except to say I have tremendous respect for those families living with autism. I admire their strength and dedication. Their love for their children is amazing. When families pull together like this it is truly heroic. When I see families like this at Easter Seals Southeast Wisconsin, it makes me more committed to providing services that will lighten the load on such tremendously caring parents and loved ones.

Easter Seals affiliates in other states are hoping to help pass this type of legislation so that people with autism can benefit from our expertise in diagnosis and screening, and when necessary, from our autism services.

The Act creates a special governmental joint venture between the department of health, the department of elementary and secondary education, and the department of human services to promote public awareness of and the use of early intervention services in regard to autism spectrum disorder.

The legislature specifically wanted to reinforce screening for children who are uninsured and/or underinsured through the Rhode Island department of health with assistance from experts, service providers and parents and to provide appropriate testing and screening models and to create a case management system to properly catalogue such diagnosis.

The department of education will develop a continuing education certificate in autism spectrum disorders at Rhode Island College.

A number of states are looking at similar legislation in their upcoming sessions, beginning in January, to promote awareness, screening and diagnosis, and professional development.

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.

They have one line and they just repeat one line. It is a very bizarre sense of autism.

If we remember European history we learned back in high school, we know that when the French talk about the British (or vice versa) it is likely to be disparaging. But did France’s Europe Minister need to include a disability label to make his point? I don’t think so.

Individuals with disabilities experience enough barriers because of societal perceptions. Using disability labels to describe the questionable behaviors of politicians just contributes to these barriers. Let’s keep the use of disability labels out of name-calling.

The matter of what exactly goes on in the mind of a dog is a tricky one, and until recently much of the research on canine intelligence has been met with large doses of skepticism. But over the last several years a growing body of evidence, culled from small scientific studies of dogs’ abilities to do things like detect cancer or seizures, solve complex problems (complex for a dog, anyway), and learn language suggests that they may know more than we thought they did.

At the risk of sounding unsophisticated, I have to ask: who cares why our service dogs help us? I’m just grateful they do! And I’m sure Michelle O’Neil, the author of a blog at Bark Magazine, feels the same way. O’Neil’s daughter Riley has autism, and the Bark blog follows the two of them as they train with Jingle, Riley’s new autism service dog.

Day 3: Today we got into the meaty stuff. Behavior disruption! This is the whole point of having a service dog for Riley, to help her with the meltdowns. Eventually, hopefully, Jingle will be able to redirect Riley before the escalation occurs. Today, a 4 Paws staff member indicated she would be role-playing a child crying (which sent Riley running from the room covering her ears before the scene even unfolded). The dogs are taught to nuzzle, to put their head in the child’s lap, or to go “over,” which means putting their whole body across the child’s lap for deep pressure.

Watch Riley meeting Jingle on YouTube and tell me if you think Jingle does her work because she’s smart, or because she’s obedient. And … do you think it matters?

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!

Over 1,000 people (caregivers, advocates, elected officials, family members, and adults with autism) will join the discussion to make recommendations on these important issues. The event will be orchestrated from a central hub in Chicago, and a webcast will allow us to hear ideas from participants at satellite sites all over the country.

The unprecedented scale and diversity of the AFAA Town Meeting will attract national attention and build momentum around addressing the needs of adults with autism.

Easter Seals is hosting the satellite sites in Long Beach and in Fort Worth.

Sign up now to be part of Advancing the Future of Adults with Autism. Be part of the solution. Ensure adults with autism have the quality of life that all citizens deserve!

Jim Williams, president and chief executive officer of Easter Seals, said, “Transportation is literally the link to schools, the work place, and every other destination in community life.”

Employment, recreation, education … accessing all of these experiences require transportation. One thing the group could agree on is that the current public transportation system has many barriers. Inaccessible fixed route systems, limited para-transit and a complete lack of resources in rural areas were all mentioned.

The people at this event were focused on solutions. Solutions such as incorporating transportation education into high school curriculum standards, providing sensitivity training to public transportation operators, and promoting self-advocacy skills throughout a student’s years in special education.

The conversation at the roundtable was just the beginning. This group and others will continue to work towards ensuring that youth with disabilities have the transportation they need to lead the lives they deserve.

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.