Advocates worried about changes to autism diagnosis criteria

by Beth Finke

A recent article in the Detroit Free Press quotes Dr. Patricia Wright, our National Director of Autism Services here at Easter Seals. The article covered the proposed changes to the criteria for diagnosing autism and the concerns around shrinking eligibility to receive services. It explains that a committee appointed by the American Psychiatric Association has recommended defining several levels of autism as a single new category called autism spectrum disorder:

The new guidelines would require clearer assessment of a person’s overall developmental status, including social communication and other cognitive and motor behaviors.

But some worry that the new standards would mean those with the least severe forms of autism may no longer fall within the newly defined spectrum. Those with Asperger’s disorder, for example, have deficits in social skills but not thinking and reasoning abilities. Because some are higher functioning, advocates worry they may no longer fit the criteria.

Dr. Wright points out that those of us who advocate for people with disabilities push for broader definitions of conditions to ensure that everybody who needs services can access them. “But our society has a need for labels,” she says. “And we use it to decide who can and cannot access services.”

The article also quotes Dr. Walter Kaufmann, the director of the Center for Genetic Disorders of Cognition and Behavior at Kennedy Krieger Institute in Baltimore. Kaufmann helped develop the proposed new guidelines and sees them as a potential help. “Rather than cutting off services for some, the changes might better define where patients fit along the wide autism spectrum and whether their main problem is in social interaction. And that would mean more targeted, more effective interventions,” he said.

Guess we’ll have to wait until the guidelines are implemented to see the true impact on services.

More on apps and autism

by Bob Glowacki

When I read a story about apps and autism on the BBC News website I thought it would make a great discussion on our autism blog. At Easter Seals Southeast Wisconsin we have grown our autism services and added a few iPads to begin tapping this technology. I asked our staff what they are seeing and recommending with the children we serve. Today’s guest post is written by senior therapist Melissa Born. In my next post I’ll introduce another senior therapist at Easter Seals Southeast Wisconsin who explains how her own two sons, both who have autism, use iPad apps to help them communicate.

App gives individuals with autism a voice

by Melissa Born

A very popular augmentative communication app called Proloquo2Go is being purchased by assistive technology specialists, occupational therapists, speech language pathologists, behaviorists, special education teachers, and other professionals and parents to help meet the communicative needs of children and adults who are unable to communicate verbally.

AssistiveWare first released Proloquo2Go in April of 2009, and it can be purchased on iTunes and is fully compatible for easy use with the iPad, iPod Touch, and iPhone. This remarkable App helps children and adults who are unable to speak to express themselves through text-to-speech voice, and can be modified and individualized in many different ways to meet the dynamic needs of different users.

Proloquo2Go comes with a very large default vocabulary, almost 8,000 up-to-date symbols, and the capability to immediately import photos on the spot and incorporate them into the user’s word/picture library. The app can be modified in numerous ways, such as voice (age, gender, volume, pitch, rate, dialect, etc.), symbol size, and number of symbols appearing on the screen at once.

Proloquo2Go allows its users various options to communicate through the iPad’s touch screen. A user may select symbols, words, symbols paired with words, or even letters on a QWERTY keyboard.

When Proloquo2Go is purchased and loaded onto an iPad, it comes with a large library, organized into different categories. However, at any point, the application can easily be programmed and tailored to meet the needs of each individual user. You can change initial settings by deleting, adding, cutting, and pasting words/pictures.

An individual can use a symbol from the default symbol library, take a picture with the iPad/iPod Touch/iPhone to use, or even find a picture on the internet (such as a place in the community that the individual might go) to use in Proloquo2Go.

Previously, a person unable to communicate verbally may have carried around a relatively bulky and expensive dedicated device in order to meet their communication needs. But now, a simple augmentative communication app is available to purchase and load onto the convenient and lightweight iPad device … a device that can also hold many other reinforcing and/or educational apps that appeal to individuals with autism.

More on proposed change in autism diagnosis

by Lisa Tate

I read the post Patricia Wright published here (titled Autism services should be based on need, not diagnosis) with great interest. The revisions proposed to theDiagnostic and Statistical Manual of Mental Disorders (DSM-5) will be part of the first major revision to this manual in 17 years, and an expert panel appointed by the American Psychiatric Association is assessing the impact of a narrowed definition of Autism Spectrum Disorder.

The New York Times article Patricia mentioned in her post described the proposed narrowing of the definition of Autism — it would consolidate the current definition of Autism Spectrum Disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

Many of us working in social services have already experienced the impact of narrowed eligibility for services. Here at Easter Seals Central Texas, we have already experienced a 25% drop from last year in the number of children enrolled in our Early Childhood Intervention program. We attribute this to the narrowing of eligibility criteria in Texas that already began in September. Eliminating services for children early on like this will surely leave many children with continued needs as they enter the public education system — where the cost for providing services increases significantly.

Criteria proposed for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders are posted on the DSM-5 web site and will be open for additional public comment this spring. Final publication of DSM-5 is planned for May 2013.

Eat ice cream — it’s good for you!

by Beth Finke

Snowy weather isn’t the only winter tradition up and down the East Coast — so is Friendly’s Cones for Kids! This is Friendly’s 31st annual Cones for Kids and the campaign has raised more than $27 million for Easter Seals since 1981.

Several Easter Seals clients and their families visited Friendly’s headquarters in Wilbraham, Mass., last week to kick off the campaign. Kelli Mead told her family’s story during the festivities. Her son, Carter, is a true early intervention (EI) success story! Born with a condition called tretramelia, Carter is missing bones throughout his body which resulted in anomalies on all four limbs.

Because of the EI services Carter received, he now has an equal chance to learn, grow and achieve his dreams just like his peers. Today Carter is a thriving five year-old boy. He is strong, happy and fearless.

Now through Valentine’s Day, you can support Easter Seals Camp Friendly’s programs for kids with autism and other disabilities every time you visit a Friendly’s Restaurant. Not only will you help kids like Carter, but you’ll be rewarded with a sheet of Valentine Cards! The Valentine Cards can be redeemed at Friendly’s for 5 free Kids Cones through March 14, 2012.

Funds raised in Friendly’s Cones for Kids program support Easter Seals Camp Friendly’s in nearly 30 different locations. Camp Friendly’s provides an opportunity for kids with autism and other disabilities to be included in regular camp activities like boating, swimming, archery, ropes courses, horseback riding, hiking and fishing.

So put down the shovels, turn off the snow blower and go ahead and enjoy some ice cream at a Friendly’s restaurant near you. You’ll not only enjoy a tasty treat, but you’ll feel good about supporting essential disability camp programs in your community. Sweet!

Autism services should be based on need, not diagnosis

by Patricia Wright

An expert panel appointed by the American Psychiatric Association is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and the proposed change in the autism diagnostic criteria has been getting a lot of attention. The New York Times discussed the potential effect of the upcoming change, MSNBC produced a piece about it, and Nancy Snyderman, one of my favorite medical media professionals, discussed this issue on the Today Show recently. Clearly this is a big deal in the autism community.

The big deal to those of us at Easter Seals is that individuals with autism receive the supports and services they need to lead a high quality life. In all the media hullabaloo, the discussion about the diagnostic changes are paired with the message that these changes could/would limit access to services. I may be a dreamer, but wouldn’t it be great if individuals received services based upon need instead of a diagnosis?

Even with the current diagnostic labeling strategy, we hear too many reports of individuals with autism not being able to access services — an individual with Asperger Syndrome who didn’t qualify for services as their IQ score is too high … individuals with autism who perform too independently on activities of daily living to qualify for services … that sort of thing. These are people who are not able to find work or engage in education or make friends or find housing because of the nature of their disability — but still, they don’t qualify for services early on?

So, I agree that policies that decrease access to needed services do not assist individuals with autism to become contributing members of our society. But there is a bigger question to be asked than why these changes are being proposed to the diagnostic criteria. The bigger question is this: why hasn’t our society made the decision to support the members of our community who need assistance?

Commitment that shows

by Beth Finke

Folks sure are keeping busy over there at Easter Seals Peoria & Bloomington-Normal & Decatur! We already published a post this month written by Erin Rogers (their Executive Vice President of Program Services) explaining their participation in a two-year, randomized, controlled, and blinded clinical trial on the effectiveness of The P.L.A.Y. Project. Now Erin has been quoted in an article in the East Peoria Times-Courier about something else: Easter Seals Peoria & Bloomington-Normal & Decatur’s new Intensive Autism Therapeutic Program. The center contains a wide variety of resources, including:

• visual supports,
• books,
• Boardmaker software program,
• DVDs,
• games,
• structured teaching kits,
• toys,
• computer software programs,
• internet access and other learning aids.

In the article, Erin said that Easter Seals Peoria & Bloomington-Normal & Decatur is “committed to continually develop outreach programs for families and professionals working with children with autism.” If you ask me, that commitment really shows.

Easter Seals-Goodwill Northern Rocky Mountain celebrates a milestone

by Beth Finke

Congratulations to Easter Seals-Goodwill Northern Rocky Mountain on its 65th anniversary! To mark the occasion, “Montana This Morning” (the morning show on the local CBS station in Great Falls, Montana) featured the affiliate on their show earlier this month.

President and Chief Executive Officer of Easter Seals-Goodwill Northern Rocky Mountain Michelle Belknap gave some background on Easter Seals, explained their affiliate’s partnership with Goodwill and described its employment and autism services. “A lot of services we provide are out in the community,” she said. “You see the mission every day and you see the impact that we have on [our clients’] lives.”

Thanks to Easter Seals-Goodwill Northern Rocky Mountain, children with autism who grow up in small towns in Montana have communities that know, love and appreciate them. The children still have challenges that result from their autism, but their local communities are much more successful in addressing those challenges. Happy birthday, Easter Seals-Goodwill Northern Rocky Mountain!

Studying the P.L.A.Y. Project

by Erin Rogers

The P.L.A.Y. Project (Play and Language for Autistic Youngsters) is conducting a two-year, randomized, controlled, and blinded clinical trial on the effectiveness of The P.L.A.Y. Project model of intervention. We at Easter Seals Peoria-Bloomington are pleased to be one of the five Easter Seals affiliates participating.

With research-design guidance from Michigan State University, and community-outreach support from Easter Seals, the study compares the outcomes of 60 children who participate in The P.L.A.Y. Project with the outcomes of 60 children who receive standard, community interventions, making it the largest study of its kind.

Before and after the 12-month intervention, each child is assessed with a battery of tests to measure developmental level, speech and language, sensory-motor profile, and social skills. Year one preliminary results are very promising for the first 60 children involved in the study. Parents participating in The P.L.A.Y. Project reported 15-20 hours per week engaged interaction, and recorded observations demonstrate that the parents:

• were responsive to child’s cues,
• followed the child’s lead, and
• effectively elicited back-and-forth interaction.

An added benefit: parents involved in the P.L.A.Y. project suffered less stress and depression over time. In respect to child-specific progress, scores on the Autism Diagnostic Observation Schedule, or ADOS, showed significant improvement in the intervention group’s severity of autism symptoms. That said, there were little significant differences in IQ scores between the study and control groups.

Year two of The P.L.A.Y. Project study will end later this spring, and additional study results will be available in the next year. Until then, if you have questions about our participation in The P.L.A.Y. study, you can contact Easter Seals in Peoria at 309-686-1177 or Bloomington at 309.663-8375.

What do you end up doing with those grants, anyway?

by Michael Pelfini

All of us at Easter Seals Bay Area are so proud of Michelle Ficcaglia, Jennifer Cowherd and Audrey Niblock for earning their Board Certified Behavior Analyst (BCBA) credentials. As a board certified behavior analyst, each of these professionals brings a wide breadth of experience and expertise to ensure that individuals and families affected by autism and other disabilities get meaningful answers and help.

Michelle Ficcaglia, who serves as the Clinical Director for Easter Seals Bay Area’s Autism Project, and Jennifer Cowherd, Program Manager for Easter Seals Bay Area’s award-winning Kaleidoscope After-School Program, were able to pursue their BCBA certification through a grant from CVS Caremark All Kids Can Program™, committed to supporting children with disabilities and promoting inclusion. Easter Seals Bay Area received the CVS Caremark All Kids Can grant for $20,000 in May of 2009, to strengthen local autism services through Professional Development in Applied Behavior Analysis. The grant was awarded to Easter Seals Bay Area in response to families’ need for greater access to autism services.

The expertise that each of these women bring to Easter Seals is invaluable to our exceptional team of professionals. All of us share our commitment to improving the lives of children in our community, and the CVS Caremark All Kids Can Grants enabled two of our top staff to obtain their BCBA credentials, which will help Easter Seals Bay Area continue to lead the way in providing critical services to those living with disabilities, in particular autism, in the Bay Area. Thank you, CVS, and congratulations Michelle, Jennifer and Audrey.

Love on the spectrum

by Patricia Wright

It’s fun to read a newspaper story about people you have met — especially when it is a good article! I enjoyed this very experience when I read a article called Navigating Love and Autism about the blooming romance between 19-year-old Jack Robison and Kirsten Lindsmith, both students at the University of Massachusetts campus in Amherst.

I had the good fortune of spending an evening with Jack Robison and Kirsten Lindsmith at last year’s Autism Society conference. They were delightful in person, and their personalities shine in this great article written by Amy Harmon.

Interpersonal relationships are a lifelong learning opportunity — for everybody. Even folks that have mastered most of life’s challenges (e.g. career, finances, and education) often struggle with how to successfully partner with another person. These two young people graciously provide a view into their world and are a great example of the unique challenges that individuals with autism experience in pursuing a partnership and the success they have had in overcoming some of those challenges. In her article, Ms. Harmon writes about a misunderstanding about individuals with autism:

Because they have a hard time grasping what another is feeling — a trait sometimes described as “mindblindness” — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships.

This is not true. Amy Hardon’s article tackles many topics important to relationship, communication, personal preference, and sex — all with an ASD spin. The article informs us neurotypicals about some of the unique aspects of relationships for individuals with autism — but also provides some insight that the challenges in these relationships aren’t that different than the ones the rest of us experience.