Traveling with autism

by Beth Finke

My husband Mike and I are heading north this week to spend Thanksgiving with our son. Gus is 23 years old now, and we look forward to Thanksgiving dinner with him and his three roommates in their Wisconsin group home.

When Gus still lived at home with us, our family often spent Thanksgiving Day on the road. Back then there wasn’t much guidance, either in newspaper articles or from books, about ways to make it easier to travel with a special needs child. That’s why I was so happy to find an article highlighting tours and travel agencies catering to the needs of families with autism in the travel section of a Sunday New York Times last year.

While most people look forward to a vacation with its new vistas, surroundings, food and routines, many families traveling with children with autism face a daunting task of providing some well-established routines to help their child feel secure. Long lines, masses of travelers, new schedules for eating and sleeping can throw off their child and make the trip less than relaxing.

The article chronicles families staying at hotels that have made accommodations for children with autism. It also points out that Americans with autism are vacationing in record numbers.

Yet for every parent who decides they’re better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who are determined to hit the road, particularly if there are nonautistic siblings in the equation.

Congrats to the hotels who are wise enough to go out of their way to educate themselves and their staff about autism. Goodness knows our families need vacations as much — or more — as any other family does!

Inspired by families living with autism

by Bob Glowacki

A lot of people left comments to a New York Times article called Going to Battle Against Autism, and I found myself touched by what those comments said about the dedication of families with autism. I was especially moved by the stories of two parents who were not only stretched physically and emotionally, but also facing an uncertain future for their child.

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.

Rhode Island governor signs autism legislation

by Denise Rozell

This week, following state legislative passage, Rhode Island Governor Donald Carcieri signed the Rhode Island Autism Spectrum Disorder Evaluation and Treatment Act into law. You can view the Act here (PDF).

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.

Accessing autism services: why a label matters

by Patricia Wright

Describing someone as having autism tells you a bit about that person. But really … what can you tell from that label? Some people with autism require significant support throughout their lives. Others with ASD move through their daily lives independently.

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.

Language and labels — what’s the big deal?

by Patricia Wright

Language and labels are powerful. They convey information, inform society and suggest a particular perspective. Labels that are used to describe individuals with disabilities, when used in other contexts, are often derogatory. Pierre Lellouche, French minister to Europe, did just this when describing the British Conservative Party in an interview with The Guardian.

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.

Are autism service dogs smart?

by Beth Finke

A story in last Sunday’s New York Times ponders whether service dogs help humans because they are smart, or simply because the rigorous training they go through makes them want to please the person on the other end of the leash.

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?

Autism town hall this Friday!

by Patricia Wright

This Friday (November 13), Americans in 15 cities will come together to create a policy agenda for addressing the needs of adults with autism. These needs include housing, jobs, recreation, friends and supportive communities. You’re invited to join us to create a policy agenda for addressing the needs of adults with autism!

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 and Easter Seals working together

by Beth Finke

An article in Reuters last week touts Safeway Inc. for the generous grants it gives to Easter Seals to empower children and adults with autism and other disabilities.

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!