Welcome back to season 2 of “what the AUTISM?!” This podcast is intended for listeners who are interested in learning and better understanding the autism diagnosis. If you are a new listener to our podcast, welcome to our community! Whether you are a parent, a health care provider, a teacher, a fellow community member, or an aspiring behavior analyst, this podcast is meant to create an ongoing discussion with you the listeners, to better understand all the mysteries of this autism diagnosis and be a resource to one another as we each partake in this journey together.
Today’s episode is on the topic of transitioning to adulthood for individuals that are diagnosed with autism. Those that follow autism research will have noticed that much of the research conducted focuses primarily on birth to childhood, but there’s a growing push for research to expand to adulthood and beyond for this specific population. Understanding life course trajectories can help us identify how different outcomes stem from different etiologies and different prevention strategies that would be most appropriate for different subgroups of individuals that are impacted by the autism diagnosis in various ways. Basically, what this means is that autism is a disorder that encompasses a wide spectrum, and in order for us to better understand the appropriate treatment and care for each individual, we need to conduct further research that focuses on more than just the infancy and childhood years.
A resource I want to point our listeners to is the National Autism Indicators Report. It’s a helpful guide put together by Drexel University to present current research findings and their implications. The specific report I want to point you towards is the report from 2015 that focuses on transitioning individuals into young adulthood. Young adults with autism have a difficult time post high school for all possible outcomes, whether it is work, continuing education, independent living, socializing and participating in the community, and staying physically healthy and safe. To further complicate these difficulties, many of these individuals face adulthood by first stepping off a services cliff. This is a common analogy utilized within the autism community to refer to the transition that individuals diagnosed with ASD go through once they graduate high school. They no longer qualify for the services they’ve had access to since infancy, and these transitions are some of the hardest obstacles that an individual diagnosed with autism and their family have to experience. The National Longitudinal Transition Study conducted in 2012 found that over ⅓ of teens diagnosed with ASD could not navigate to various locations outside the home, or were not allowed to do so. The report also identified that most teens with ASD could perform adaptive tasks, such as feeding and dressing, very well, but some had trouble using the telephone or looking up phone numbers or counting basic change. It’s also important to highlight in terms of social opportunities, individuals with ASD were found to engage in fewer social and recreational activities in middle and high school compared to their peers without an ASD diagnosis. Students with ASD were also found to have decreased levels of participation in sports, clubs, and other lessons/activities, and community service.
Over half of young adults with autism received no vocational or life skills services during their early 20s. It’s also important to note that nearly half of the youth on the autism spectrum were victims of bullying during high school. Over one-quarter of adolescents engaged in some type of wandering behavior in which they impulsively left a supervised situation, increasing their risk of becoming lost and going missing. Some of these statistics highlight the wide range of needs and accommodations that individuals with ASD will be needing; however, the health care system doesn’t have the resources nor the infrastructure to support these individuals that are aging into adulthood. So what do we do?
As a clinician, one thing that I want to emphasize is that it is NEVER too early to begin planning your child’s future. If your child just got their diagnosis, it’s vital that you have this conversation with their treatment provider to ensure that the goals and skills that are being targeted are appropriate to the goals that you’re setting for your child. But I also want to highlight that if and when your child develops the cognitive skills to talk about their future, include them in this decision process. It’s so easy to get caught up in the chaos of IEP meetings and clinical meetings with your child’s providers, but it’s so important that we consider the voices and opinions of these individuals so that we can help them achieve their definition of a “good quality life.” I also want to note that for parents of children with ASD, begin thinking about conservatorship and what your child’s adulthood might potentially look like. This is an assessment and evaluation that should be conducted every year. I’ve had many previous clients visit this idea and legal process of conservatorship when the child is 16/17 years old. This is a discussion that should be revisited over and over again during the child’s adolescent years. It’s so easy for school districts and providers to pass your child on to the next step, but your role in this whole process is to be your child’s best advocate. Are these goals the most appropriate for your child? Can your child achieve higher standards and goals? Don’t assume that everything the schools and clinics pass on to you as answers is the end-all-be-all. Keep researching and keep asking. Be your child’s biggest advocate and think ahead.
This concludes our episode for this week. If you have any questions/concerns you’d like to share with us, or if there are any other topics/questions, you’d like for us to cover, please reach out to us via email or on Instagram. You can always connect with me via email at whattheautismpodcast@gmail.com or on our Facebook page/Instagram @whattheautism. We upload a new episode on your favorite podcast platform every Sunday. Please note that this podcast has been created to discuss my personal experiences and opinions and is not a means of medical or psychological recommendations. But if you enjoyed this podcast, please make sure to follow and subscribe to our podcast channel, and I’ll see you in our next episode.
