Reviewed by Mary Jane Weiss, PhD, BCBA-D and Maggie Haag, MEd, BCBA, LSW
Association for Science in Autism Treatment
As has been previously reviewed both in ASAT publications and elsewhere, there is a responsibility for practitioners in school-based programs to prepare individuals with autism for adulthood as best as possible. As service entitlement diminishes with age, and as instructional support ratios expand with age, preparing learners for the next environments is crucial. We reviewed a documentary, created by the mother of a son with autism, which explores this need in a compelling manner.
The documentary “Aging Out,” by Melissa Collins-Porter, follows young adults with autism in California as they age out of school-aged services and into the adult services system, where funding is not an entitlement, and therefore not guaranteed. Per the film, there are over 91,000 people receiving services in California, with 28,000 young adults who were diagnosed with autism in 2018 aging out and in need of adult services and support.
In this short film, which can be screened for free by parents and caregivers of individuals with disabilities, we are first introduced to Liam, the filmmaker’s young adult son. In her remarks, Collins-Porter does an excellent job describing the feelings experienced by parents of children with autism as their children move through the lifespan. Liam’s story highlights the responsibility that may get passed on to siblings of individuals with autism when the parents/primary caregivers are no longer able to provide support. Liam’s sister is supportive of his future ambitions of becoming an actor, and clearly loves her brother very much. She is keenly aware of the fact that the responsibility to ensure Liam has a meaningful life may be hers one day. Although she is grateful to be his sister, this potential responsibility is an obvious stressor. The stress on siblings cannot be overstated, and Liam’s story discusses this important issue in a real and empathic manner. It demonstrates how some siblings of individuals with ASD experience acute stress of the unknown.
Next, we meet Minaa and Zain, who are siblings with autism living with a single parent. Minaa and Zain have different support needs, although they are both on the autism spectrum. Their story portrays the challenges of a single parent serving as the sole caregiver for two children with special needs. Zain does not have the skills to complete many basic living skills without the support of his mother, who also has to work to support the family. He is non-verbal, not toilet trained, and has Celiac disease. He requires around-the-clock care every day. Minaa is dependent on her mother for most of her needs, including reminders to eat her meals. The strain of being a single parent and provider, while constantly being haunted by the looming concern of whether there will be a placement for her children after school-aged services end, is portrayed powerfully in the film. As viewers, we can feel this woman’s daily struggle and ongoing fear. This story is very important to highlight, as so many parents of young adults with autism experience the same crisis, face the same fears, and struggle daily to support their children with an entirely uncertain future ahead.
Finally, we meet Sam. Sam’s story clearly illustrates the need for social connectedness and the isolation that can result from the social skill deficits that impact a person’s ability to form and maintain friendships. Sam wants to have friends, but it has become more difficult to have form friendships as he has grown older. He has a very loving and supportive family, but he craves more than that and longs for the opportunity to develop genuine friendships. Sam illustrates, in a heartbreaking way, the social isolation that accompanies adulthood for many individuals with autism.
Also interviewed are a number of professionals, who shed some light on the state of the adult service system. There is an immense strain on the system to find the funding to support the growing adult population with autism. Some adult day programs in California are closing due to the funding in adult services not being adequate to cover the cost to run a program. Overall, these issues, while true for California, are observed across the country. Few solutions are in sight, and the number of individuals needing services continues to increase.
This 32-minute film does an excellent job of highlighting the different experiences and support needs of young adults with autism. The need for various types of support programs for adults, including both community-based and facility-based options, is reviewed. The struggles that families face in terms of long-term supports, such as housing, employment, self-care, and long-term guardianship are discussed. The potential burden on siblings is also noted, as they too are affected in a lifelong manner. Finally, the funding and program availability crises are highlighted.
The film gives us a glimpse of what the young adults featured in the film are doing now. Fortunately, they all have found day programming options that seem to be a fit for them*. While this is encouraging to see, it is also important to note this is not the case for all young adults who “age out.” Some complete their secondary education programs without a day program or services in place. Most states have waiting lists for funding and program options. While states have taken great steps to address their waiting lists, most cannot guarantee the availability of services even if funding is obtained.
Melissa Collins-Porter should be commended for her work in bringing this important issue to light. Parents are silently struggling on a daily basis, and individuals with autism face desperate, uncertain futures. It would be wonderful to learn more about these young adults and others, and a longer film would be even more intriguing. Viewers will be grateful for the glimpse into the lives of these young adults and their families, who so bravely came forward to tell their stories in order to help others and educate the community about this crisis. “Aging Out,” and other stories of individuals with autism, need to be shared so that the invisible struggle is made known. Creative solutions are required, and there is a nationwide imperative for a call-to-action from both a funding and a program development perspective.
*Authors’ Note: It is beyond the scope of this review to comment on the program options/interventions the young adults in this film have chosen. In general, interventions chosen should have a strong evidence base for efficacy and should be chosen based on the characteristics and needs of the individuals. Note that the filmmaker can be reached at firstname.lastname@example.org to receive a link and password to the film at no change. She has indicated that she would be willing to speak to your group for free as well.
Citation for this article:
Weiss, M. J., & Haag, M. (2020). Aging out: A review. Science in Autism Treatment, 17(1).