Role of the speech-language pathologist in improving outcomes of young adults with autism
by Anne Roux
January 6, 2016
Public health research was not my first career. Before the words autism outcomes, services research, and life course perspective ever entered my mind, I practiced early intervention for children with autism as a speech-language pathologist (SLP). Recently, on the heels of the publication of the National Autism Indicators Report: Transition into Adulthood (2015), I was invited to speak at the American Speech Language Hearing Association (ASHA) convention to reflect on the role of the SLP in improving outcomes for adults with autism. Here is what I shared.
Approximately 50,000 youth with autism turn 18 every year and enter the adult service system. ASHA’s Practice Portal on Autism highlights areas of “special consideration for transitioning youth and post-secondary students” with autism, including:
- Transition planning
- Disability Support Services (academic and social communication supports)
- Vocational Support Services
- Community Integration
Our own work describes the dire need for improved outcomes in these areas. Despite federal requirements, the most recent national-level data indicates that only about 60% of youth who received special education services received transition planning on time. Of youth with autism who went on to postsecondary education and disclosed their disability to their school, about half reported receiving some type of help, accommodations, or disability support services. In fact, services declined dramatically across the board when youth with autism left high school, and over half (53%) received no vocational or life skills supports. One in five were able to live independently at some point between high school and their early 20s, but one-fourth were socially isolated. Each of these outcomes is a factor in overall quality of life, and receiving supports in one domain may help improve functioning in others.
There are some hints at what might make a difference in people’s lives. We have evidence suggesting that participation in extracurricular activities may make a difference in outcomes independent of many other factors. Having paid employment during high school is also associated with higher rates of employment during adulthood. And SLPs should take note that better conversational skills are associated with better outcomes across most domains.
So, what role might SLPs play in improving outcomes for transition-age youth with autism? I put forth the following ideas:
As clinicians, ensure transition planning happens.
Alverson and colleagues (2015) recently published an analysis of transition themes that includes clear, intentional, coordinated transition planning. SLPs can play a critical role in this process given their expertise in executive planning. For an example, check out the 2015 ASHA Conference presentation by Elizabeth Serpentine and Elizabeth Clark who presented their classroom-based curriculum to support high school students with autism as they prepare for college.
As a field, advocate for improved policy.
Speech-language therapy is the most common service students with autism receive during high school. It is also the service with the greatest decline after high school. While 66% of high school students with autism received speech services; only 10% received speech services during early adulthood. A sobering statistic.
Declines in receipt of speech-language services after high school for students who qualified for these services during high school suggest problems in coverage of costs of services and/or lack of providers to deliver services. ASHA can play a role in investigating the barriers and advocating for expanded insurance and Medicaid coverage for speech-language services for adults with autism.
As researchers, build and execute an adult research agenda.
Even when services are available, the paucity of evidence-based services for adolescents and adults with autism is staggering compared to the knowledge we have about what works for children (See National Professional Development Center on ASD and National Standards Project, Phase 2).
A host of research questions remain unexplored: What are the communication needs of adults with autism? Which groups of people need which types of communication services and supports? What works to support their communication needs in the workplace, where they live, in the classroom, at the store? How are people using augmentative and alternative communication supports in their daily lives? How can SLPs help co-workers, classmates, roommates, and others create effective communication environments for young adults with autism?
As a field, review (and update) ASHA guidance to reflect the community context of adult intervention.
As students age, the focus of intervention shifts from home and school-based settings to community-based supports. Opportunities for SLPs abound here to build and consult on models for supporting communication in community-based environments. We have seen expansion of programs that employ people with autism that range from small business ventures, to specialized tech start-ups like Specialisterne, to larger-scale corporate programs like Walgreens and Microsoft. All of these environments could benefit from increased awareness of the communication styles of individuals on the spectrum paired with co-worker training on effective communication strategies.
As the ASHA Portal on Autism suggests, the need for SLP support of communication does not end when students exit high school. ASHA members interested in adult autism could play a valuable role in investigating these needs and requesting expert input to generate further guidance for adult autism intervention and supports.
Why should SLPs care about services for transition-age youth with autism?
Four in 10 with autism are disconnected from employment and continued education after leaving high school. Whether this is a failure of special education, transition planning, or the service system is unknown. What remains is a vast expanse of unexplored opportunities to create and deliver innovative supports and services, and to measure their effects on quality of life for young adults with autism. Dream. Think big.
Anne Roux, MPH, MA is a nationally renowned autism researcher, author and family advocate. She leads the production of our National Autism Indicators Report series and other publications.