Self-advocates and researchers open summit on addressing transition to adulthood for people with autism

WASHINGTON, D.C. – Autism Speaks kicked off a two-day Thought Leadership Summit on Transition to Adulthood with presentations from a panel of self-advocates and two researchers whose focus area is transition.

Moderated by Autism Speaks Vice President of Services and Supports Val Paradiz, a panel of three self-advocates discussed their experiences preparing for adult life, specific challenges they faced and any actions or accommodations that helped them achieve their goals.

Panelist Paul Kotler, who shared his comments via a text-to-speech device with support from his mother, Melinda, said the ability to communicate has been a breakthrough for him. He now advocates for himself others and finds fulfillment in his advocacy work.

“Not being able to speak was my biggest challenge,” Kotler said. “People who struggle to communicate need to be heard.”

Kotler also said planning to go to college was complicated. But having a teacher who believed in him and made him a respected member of the classroom helped. He later earned his GED.

The education supports he uses, including having a communication assistant and behavior specialist, help him as a student at Widener University.

Another panelist, Katie Davis, is a graduate student at Drexel University. She found that moving away from home was her biggest challenge. In addition to her educational goals, she said, setting up an appropriate housing situation has been another of her biggest priorities.

“It was hard having a roommate,” she said. “I’m used to having my own space.”

An activity that helped her during high school was participating in a robotics team, which she said helped her learn to navigate relationships and work as part of a team.

During her second year of college, she had a health emergency that required her to navigate getting to the emergency room and manage her own emergency care. Further discussions on health care transition are planned for later in the meeting.

Now that she has achieved many of her personal goals – to graduate high school, college and with her master’s degree – Catie is now facing a new challenge: finding a job. Ultimately, her long-term goal is practical – to be able to retire after a fulfilling career.

A third contributor, Brigid Rankowski, echoed these priorities but also added the concept of social and emotional wellness to her priority list.

“When we discuss meaningful transition, we have to look at the entire spectrum,” Rankowski said. “What is it that the individual wants as their outcomes?”

In the second half of the discussion, researcher Erik Carter, Cornelius Vanderbilt Professor of Special Education at Vanderbilt University, presented the framework around which he studies transition – that it is a journey that evolves over time, rather than a single event or period of time.

As he pointed out in his presentation, much of the existing research on transition outcomes is focused on those that happen within four or eight years after graduation from high school. Instead, Carter encouraged attendees to think more about how we measure outcomes over the lifetime.

He also suggested that a more meaningful measure of success – rather than simply a graduation or dropout rate – should be how well a program or effort bridges the gap between what the person aspires to and the outcome they end up achieving.

Lauren Lindstrom, dean of the School of Education at the University of California-Davis who has developed integrated transition programs for more than 25 years, shared her experience as a program specialist.

She researches why transition symptoms continue to show “opportunity gaps” for youth with ASD. To tackle these gaps, she suggests three critical facets of the programs that influence a person’s opportunity to achieve their goals: Equity and Access; Family Involvement; and Collaboration & Partnerships.

Watch the full panel discussion below.

This video was edited due to technical difficulties and to protect copyrighted material.

Click here for a prepared transcript of Dr. Erik Carter’s presentation on outcomes.