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.

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?

Easter Seals is proud to be part of Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism. At the town hall meeting this Friday, over 1,000 people in 15 cities will join the discussion to make recommendations on these important issues. Caregivers, advocates, elected officials, family members, and adults with autism will participate, and we hope you will, too!

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.

There are a few slots left in these sites — register now!

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!

We started the day off with a tour of the White House. About 200 Easter Seals staff and volunteers got to take advantage of this rare opportunity!

Then we met with members of Congress for our home state of Wisconsin — Senators Kohl and Feingold, and Representatives Kagen, Sensenbrenner and Moore. We had a half-hour with Sen. Kohl discussing health care and long term care. We were pleased to find all the members we met with agreed with ending pre-existing conditions as a major policy goal for people living with disabilities. Each office told us they agree on 80% of the issues involved. Rep. Kagen is a doctor and is following this issue closely. We even got a fist bump from him for the work done at Easter Seals!

As an organization, we were pleased to hear the praise from all our visits about the work done by Easter Seals. This year, Easter Seals Southeast Wisconsin is investing $100,000 to start to a new Applied Behavioral Analysis (ABA) program for children with disabilities. Annually, we raise over $100,000 to cover shortfalls in our Birth-to-4 program. Each person we met with knew Easter Seals is a vital piece of the network in providing community supports for children and adults with disabilities.

But one day of staff and volunteers in D.C. is not going to get the job done. One office told us the people back home need to weigh in.

It’s not too late to keep calling, mailing and emailing your thoughts. It helps in guiding policy and letting members know what people back home are thinking. There are concerns within any of the current bills that can affect those living with disabilities, their care and their supports. Many people living with disabilities have long term health conditions and will be impacted directly by the changes in our health care system.

So … stay tuned and stay involved!

One characteristic we often hear about people with autism is an intense interest in a particular subject. Colloquially in the field of autism this is called a “special interest,” and Specialisterne hires individuals with autism who have a special interest in internet technology.

In Sonne’s native Denmark, as elsewhere, autistics are typically considered unemployable. But Sonne worked in I.T., a field more suited to people with autism and related conditions like Asperger’s syndrome.

“As a general view, they have excellent memory and strong attention to detail. They are persistent and good at following structures and routines,” Sonne says. In other words, they’re born software engineers.

Too often I hear people say things like, “People with autism are really good at (name a topic).” CAREFUL! I think people with autism are really good at something that interests them, at a particular time, and in a particular environment. Kind of like the rest of us!

Take me, for example. I’m good at cooking, in the evening, in my kitchen. In the morning, it’s a bowl of cereal. In an unfamiliar kitchen, I’m a little shaky. Each person with autism is an individual, and their interests emerge in particular environments in a particular time frame.

It’s fantastic when anyone’s interest intersects with a vocation, and if you are a person with autism who loves Information Technology, Specialisterne may want to hire you. Mr. Sonne used a great business strategy: find an area of special interest, and employ people with autism who have that special interest. Given the vast number of adults with autism who have difficulty securing employment, it would be great of other business leaders took on this model with their own area of special interest.

At a time when “celebrity rules” and the only “ordinary” people we see are faces in the crowd, The Story reminds listeners that their stories and their lives matter. We believe that by creating a space for first person stories we are choosing not to accept a pollster’s version of our thoughts and attitudes.

The Story originates on North Carolina Public Radio, so Dick Gordon, the show’s host, was in Chapel Hill during Friday’s interview. Me? I sat alone with my Seeing Eye dog Hanni in a recording booth in Evanston, Illinois. The sound man, seated in another room behind a plate of glass, says if you listen carefully you’ll hear Hanni’s harness jiggle as she settles in at the beginning of the taping. She slept for the rest of the hour. She’d heard this all before.

The interview questions centered on my working life. I lost my sight in 1985. The Americans with Disabilities Act wouldn’t be signed into law until five years later. When I lost my sight, I lost my job. Worse than that, I lost my self-confidence. It took a while for me to get the gumption to apply for work again, but once I did I met up with some pretty wonderful, flexible employers. A series of part-time jobs helped rebuild my confidence back. Today I’m a published author, a teacher, and … a blog moderator!

If you read my blog post about a speech Sen. Richard Durbin (D-IL), gave on hiring people with autism and other disabilities, you know he mentioned a recent DePaul University study on the costs and benefits of employing people with disabilities. Durbin used the study to remind his audience that people with autism and other disabilities make very loyal employees.

This is what the study found: on their annual performance reviews, employees with disabilities rated slightly higher than their co-workers without disabilities. Employees with disabilities took fewer scheduled and unscheduled days off work — just the opposite of what many might assume.

In addition, the average cost of accommodating the workers with disabilities — modifying the workplace to meet their needs — was $313. As investments in good, dependable workers go, that’s a bargain.

I wasn’t savvy enough to refer to research studies when they taped my interview for The Story, but I hope the spirit of that study shines through when the show airs. The Story is distributed nationally by American Public Media. It can be heard in North Carolina on WUNC-FM and WRQM-FM (90.9) in Rocky Mount. The show can also be heard on other stations across the U.S. including WBEZ in Chicago and KPCC in Los Angeles. I’m not sure yet when my particular segment will air, so stay tuned — I’ll let you know as soon as I find out.

In the meantime, take a look at a post called Disability Employment Awareness in the News on the Justice for All Activist Blog. The post has a nice round-up of articles about disability employment awareness that have already been published this month.