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Calls to Action

Building a Fulfilling Life at the Autism Speaks National Conference

Educator, researcher, self-advocate Stephen Shore opens meeting with call for greater emphasis on self-advocacy and autism-related strengths
July 26, 2013



Today, Autism Speaks’ second annual National Conference for Families and Professionals opened with a keynote address from respected educator, researcher and autism self-advocate Stephen Shore.

Dr. Shore, a professor of special education at Adelphi University, emphasized the need to embrace an “ability-based” versus disability model of autism. Drawing on research and personal experience, he outlined his steps for drawing on autism’s strengths to address its associated challenges.

“Make no mistake, these challenges are very real or we wouldn’t be here today,” he said. “My hope is to provide a greater sense of understanding about how to help those with autism lead more fulfilling lives, and this conference is a unique opportunity to reach both parents and professionals.”

Welcome and call to action
Immediately prior to Dr. Shore’s address, attendees were welcomed to the annual conference by Autism Speaks Executive Vice President of Programs and Services Peter Bell and Vice President of Clinical Programs Clara Lajonchere. “It’s about raising the bar for all individuals and families with autism by ensuring that the healthcare community understands the challenges that they face and works collaboratively to find the best solutions and treatment options for them,” Dr. Lajonchere said.

Bell added: “The theme for this year’s National Conference – treating the whole person across the lifespan – reflects two of the most important trends within the autism community. First, we must remember that autism care must be holistic and include consideration of co-occurring medical issues. Second, our support must extend beyond childhood to help those living with autism become valuable members of our community.”

Three steps to self-advocacy
As the keynote speaker for the conference’s first day, Dr. Shore brought his perspective as an individual on the autism spectrum. Nonverbal till age four and recommended for institutionalization, Dr. Shore now teaches and pursues research in special education and autism at Adelphi University, in Garden City, New York. He is the author of Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum.

In describing his three-step model for daily self-advocacy, Dr. Shore invited his audience to imagine asking someone for directions:

First, you realize that you’re getting too much information too fast.

Second, you ask for an accommodation. (“Please let me get pen and paper to write this down.”)

And third, you disclose why you need the accommodation. (“Otherwise, I simply won’t remember all you’re telling me.”)

“Though these three steps may seem obvious, many individuals on the spectrum need clear instruction on how to move through the process,” Dr. Shore explained.

By way of example, he described those with sensory sensitivities, say, to fluorescent lights. The first step is to identify the problem. “Many people on the spectrum don’t realize why a particular space provokes great anxiety,” Dr. Shore explained. Second, the person needs to request (advocate) a reasonable accommodation – for instance, sitting by a window or wearing a hat at work.

Third, the self-advocate needs to provide a clear explanation for the accommodation (disclose). This doesn’t have to be a full disclosure of an autism diagnosis, Dr. Shores says. “Sometimes, partial disclosure is best. For example, ‘fluorescent lights hurt my eyes.’”

As an educator, Dr. Shore emphasized the importance of teaching this three-step process to individuals on the spectrum so that they can handle their challenges before they cause crisis.

Supporting the successful transition to adulthood
Self-awareness and advocacy, Dr. Shore emphasized, are powerful tools in the successful transition to adulthood. “So often, we hear about transition starting at age 14,” he said. “I want to see the process started much earlier – at age 6 or even 4. I don’t think there’s an age that’s too young.”

Setting the stage for successful employment, for example, can start with jobs around the house. “Like employment, chores are something you have to do on a regular basis, whether you like them or not,” he explained. For a young child on the autism spectrum, parents might begin with one piece of a chore – such as taking a can of cat food from the shelf each afternoon.

“As with everyone, it’s important to look for areas of interest and strength,” he emphasized. “Those of us with autism tend to have a very wide range of ability in our skill set. The stuff we’re good at, we tend to be very good at. When we’re bad at something, we tend to be terrible!”

As such, the transition to a fulfilling life should focus on areas of strength and, if applicable, the propensity for routine that is so common among individuals on the autism spectrum.

“Take, for example, someone with Asperger syndrome, who tends to speak in a direct, data driven and even repetitive way,” he said. Such a person might be ideal for providing directions in a busy commuter station or store. It’s common for people with autism to enjoy memorizing and repeating information such as train numbers with their tracks and schedules, he explained. “By contrast, repeating such information all day might bore someone else.”

Dr. Shore noted his own keen interests in music and, yes, autism. “As a professor – first of music and now education – I so enjoy getting to talk about the things that fascinate me.”

Autism Speaks' second annual National Conference for Families and Professionals is an educational partnership between Autism Speaks, Nationwide Children's Hospital, The Ohio State University Wexner Medical Center and the American Academy of Pediatrics. Together, autism families, educators and healthcare professionals are exploring how a whole person approach to care can ease the medical concerns and behavioral symptoms so common to individuals with autism spectrum disorders. 

For a complete coverage of Autism Speaks 2013 Conference for Families and Professionals, click here.  

* Note: For more on this topic, see “Learning the Language of Self Advocacy,” in the Autism Speaks Advocacy Tool Kit, available for free download here.