Improving the Future for Young People with Autism
Almost all parents, including those who are actively involved in their child’s special education plan, feel unprepared to navigate the transition from high school to adult life. This article highlights important findings about outcomes for adults with autism spectrum disorder (ASD) from several new studies. (Warning: You may not like what you read). The discussion continues with specific things you can do to improve your child’s chances of becoming a successful adult.
How are adults on the autism spectrum doing once they leave high school? Until very recently, there wasn’t enough information to answer that question! Fortunately, the A.J. Drexel Autism Institute recently analyzed data about the lives of individuals on the spectrum in their early 20s. They published their findings in the National Autism Indicators Report (2015), available on their website.
Unfortunately, the outcomes are not good. For example, in the area of independent living, only about 20% of young adults in the study had ever lived independently from their parents. Just under 40 percent went on to pursue some education after high school, whether it was a community college, vocational school or a university. Only about 60% had ever worked by the time they were in their early 20’s. Of those who worked, the majority were part-time workers earning minimum wage or less.
These are just some of the disappointing outcomes identified in the report. This is not what we parents envision when we picture the future of our children! The data leads to an obvious conclusion: our current system of transition services is not working. If we want to improve adult outcomes, we need to change how we plan and deliver transition services for students across the spectrum.
This conclusion is echoed by a study by Taylor and Seltzer (2011) that focused on 66 young adults with autism who had recently left high school. The finding showed very low rates of employment for all the study participants, but those with ASD and no intellectual disability were three times more likely to have no daytime activities (work or education) than those with ASD and intellectual disability. In other words, “high functioning” individuals with average or above-average intelligence actually fared WORSE as adults than individuals on the spectrum who also have intellectual disability. The researchers concluded, “Our findings suggest that the current service system may be inadequate to accommodate the needs of youths with ASD who do not have intellectual disabilities during the transition to adulthood.” Problematic!
Now let’s focus on four ways you can improve the transition process and potentially positively impact adult outcomes.
1. Get off the Tracks!
Earning a diploma can be a good thing, but the “diploma track” can be a bad thing. Why? Students on the diploma track are “exited” from high school and special education once they’ve earned enough credits to graduate, usually around age 18. The right to a free, appropriate public education (FAPE) ends.
The problem is that the diploma track can limit a student’s access to needed transition services and supports. Students on the diploma track focus almost exclusively on academic skills. They rarely receive sufficient transition services or have enough time to develop important life skills. This situation can be a real disadvantage, undermining efforts to help them reach their potential and their dreams.
One way around this problem is to create a “blended track,” individualized to the needs of your child. A blended track includes academic courses plus meaningful opportunities to develop the skills needed for a successful adult life. (More details are offered in Tips 2 and 4). Blended track services may be delivered on a high school campus, at a district-sponsored transition program, or even at a community college.
Just a heads up: there may be some resistance about creating a blended track. First, your child may not like the idea, especially if he underestimates what it takes to be a successful adult and overestimates his own skill sets. He may be determined to take his diploma and get out of high school. Making a clear link between the blended track and your child’s own lifetime goals may help with a buy-in for the idea!
The school system might also resist the notion, since very few schools offer blended tracks for diploma-bound students. We have already discussed that doing things the way they have always been done is not working. Especially if people need convincing that it is time to do things differently, research data can be used to make a case for creating an individualized and appropriate plan or blended track.
2. Provide meaningful opportunities to develop the skills needed for a successful adult life.
IDEA Law (2004) defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation.”
That mandate could not be more clear! Students across the spectrum, including those on the diploma track, are likely to need help to develop skills to develop academic and functional skills for all their adult roles: student, employee, friend and neighbor. The key is being sure that all needs of the child are assessed and addressed. That way, meaningful learning and skill-building activities can be carried out, along with any other needed services to enhance the adult’s success in post-school activities.
Research indicates that students with ASD are more likely to have success as adults, particularly in the area of employment, when their transition plan includes some very specific activities. These practices are known as “predictors” because of the strong association between the activities and adult success. Implementing these practices can help prepare students with disabilities to be successful in their life after high school (NTACT, 2016, Southward & Kyzar, 2017).
- Two of the most important predictors of employment are teaching employment skills and paid work experience during high school. Be sure that these very do-able activities are part of your child’s plan!
- Simply including a transition goal for work and/or a transition goal higher education are also predictors of success. Keep your eye on the prize!
- Instruction in independent living skills is a powerful predictor of adult success. For this reason, it should be part of the plan for every student.
3. Be actively involved.
Hopefully, you are part of an exceptional school district with excellent transition planning and services. However, if that is not the case, you’ll need to take a leadership role to ensure that your student gets individualized, appropriate transition services. In other words, don’t leave it up to the school or district to do things “the usual way.”
In fact, parental involvement in transition planning is another predictor of success. You have the opportunity to share your vision of your child’s future success and give direction to the plan to realize it. A related predictor is high parental expectations. Southward & Kyzar (2017) report that a parental expectation of paid, competitive employment predicts success in the workplace. Telling the team that you want to aim high for your child can result in a lot of hard work to move in that direction. In contrast, having low-expectations can be a self-fulfilling prophecy.
Be sure to share your parental concerns about preparing your child for the demands of adult life with the special education team. Autism-specific needs like social skills, behavior, communication, executive function and emotional self-regulation can be addressed and incorporated into transition activities.
4. Focus on Youth Development
The National Collaborative on Workforce and Disability (NCWD/YOUTH) has also done an extensive literature review to establish the connection between specific transition activities and adult outcomes. Their five Guideposts (available at no cost on their website) can help families, institutions and youth with disabilities improve the transition process.
One of the Guideposts is called, “Youth Development and Leadership.” NCWD/YOUTH defines this as, “Youth acquire the skills, behaviors, and attitudes that enable them to learn and grow in self-knowledge, social interaction, and physical and emotional health.” Clearly physical, emotional and social wellness are central to a healthy adult life.
Youth development is an essential prequel to transition, preparing students to take part in the process. IDEA 2004 explains that transition services are to be “based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests.” Developing skills such as self-awareness, self-determination and self-advocacy can enable your child to find their voice, share their strengths, preferences and interests, and actively give direction to their own life plan.
Unfortunately, personal development is often overlooked during transition. This can be particularly problematic for youth with a developmental disability like autism who are likely to need significant support to grow in these areas. The new book, Come to Life! Your Guide to Self-Discovery may be a useful tool for this process. Whatever resources you use, be sure to focus on youth development so that your child is more prepared for the next chapter in his or her life!
Come to Life! Your Guide to Self-Discovery. (2017). Thomas W. Iland and Emily D. Iland. More information at www.ThomasIland.com
Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood. (2017). Julie Lounds Taylor & Marsha Mailick Seltzer. Free article at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033449/
Evidence-Based Practices and Predictors in Secondary Transition: What We Know and What We Still Need to Know. (2016). National Technical Assistance Center on Transition https://transitionta.org/system/files/effectivepractices/EBPP_Exec_Summary_2016_12_13_16.pdf
National Autism Indicators Report. (2015). A.J. Drexel Autism Institute http://drexel.edu/autisminstitute/research-projects/research/ResearchPrograminLifeCourseOutcomes/IndicatorsReport/#sthash.GhGi8gdU.dpbs
National Collaborative on Workforce and Disability (NCWD/YOUTH). Guideposts for Transition. http://www.ncwd-youth.info/guideposts
Predictors of Competitive Employment for Students with I/DD. Julie D. Southward and Kathleen Kyzar. Education and Training in Autism and Developmental Disabilities, Vol. 52, Number 1, March 2017.
Emily Iland, MA is an award-winning author, film-maker, educator, researcher and leader in the autism field. Emily just helped her son Tom, who has autism, realize his dream of becoming a published author. Their new book Come to Life! Your Guide to Self-Discovery is an ideal prequel to transition, helping parents and teens discover answers to the critical questions that drive transition.
This is article was featured in Issue 73 – Amazing Ways To Support Autism