Previous research has found that parents of children with ASD across different age groups exhibit significant levels of stress and are at greater risk for mental illness. The stress exhibited by parents of children with ASD has been found to be even greater than parents of children with other disabilities (Abedutto et al., 2004). Although less research has been done on the specific experience of parents of children with ASD who are transitioning to young adulthood, some findings suggest that this time period has the potential to be especially stressful. However, by taking proactive steps, developing and maintaining healthy communication patterns, and reframing their outlook and goals for that time period, families can achieve a successful transition.
The transition to young adulthood involves new opportunities and challenges for individuals with ASD and their parents. During this time period, families prepare for the end of entitlement programs (e.g., special education) and ready themselves for entry into adult systems that can be incredibly complex. Upon exiting high school, individuals with ASD will typically seek out employment, attend postsecondary education programs, or enroll in day treatment or residential programs. For those who are seeking employment or attending postsecondary education programs, some are able to do so with assistance from specialized programs and services. Unfortunately, the effectiveness of these support mechanisms can vary drastically, since many agencies are not well-equipped with the knowledge and tools necessary to effectively support the unique needs of an individual with ASD. In addition, many students with ASD leave high school lacking many of the critical skills necessary to succeed (Gerhardt & Lainer, 2011), as a result of focusing on traditional academic work. While doing so is very important for preparing students academically for college and allowing them to learn alongside their typical peers, this results in less formal instruction on the “soft skills” that are also necessary to be successful. As a result, many individuals have tremendous difficulty with their initial attempts to seek out employment and attend postsecondary education programs, which may ultimately mean that they spend significantly more time at home (Taylor & Seltzer, 2010).
Throughout this process, families are adjusting to the availability of more limited resources for their child and themselves. If the young adult with ASD is also now home more often, families need to re-adjust to spending more time together, which can impact family relationships. This occurs during a time period when many parents’ peers are experiencing a very different kind of transition, as their children are leaving home and spending less time together. This offers an opportunity for parents of typical children to also find new ways of re-connecting as a couple. Families of young adults with ASD do not necessarily have the same natural opportunity, which requires them to become more pro-active in maintaining their marital relationships.
One research study examined the changing relationship of mothers and their adult children with ASD. Taylor and Seltzer (2010) found that these relationships often became more strained over time. This was found to be particularly true of parents of children with ASD who did not have an Intellectual Disability (ID). The authors suggest that, during this time, some families may experience a renewed sense of loss, as they may have had goals for their child (e.g., college) that are seemingly more difficult to achieve than they imagined. Interestingly, Taylor and Seltzer also found that mothers’ attribution of their child’s behavior changes over time as well. As individuals get older, mothers were more inclined to attribute their child’s behavior to the individual’s personality or personal choice, as opposed to being symptomatic of the diagnosis of ASD. This causes parents to believe that their children are actively choosing to engage in behaviors that are more frustrating, which leads to greater family conflict.
During the transition to young adulthood, it becomes critical for individuals with ASD to achieve greater independence and increase their self-determination. With that, adult provider systems naturally and appropriately look to that individual as being the key decision maker regarding their own care. While this is an important step for adults with ASD, it also often requires a role-shift for families who have been the central figure in decision-making for their child. For much if not all of their child’s life, parents of children with ASD have likely had to fight to ensure that their child was properly evaluated and receiving necessary services. Many parents also had to serve as an all-encompassing resource for their child, acting as their treatment team leader, therapist, teacher, and case worker. As their children get older, due to of the decrease in services and resources for adults, many parents then find themselves taking on a greater role as care coordinator. However, their role as a decision-maker diminishes, as it appropriately shifts to the young adult. So, the dynamic and expectations make a dramatic shift as parents must balance the importance of their child’s independence while feeling the responsibility of ensuring that they embark on the right path. As a result, some parents might find themselves becoming more stressed, frustrated, and even upset or resentful at this prospect, particularly if they perceive that others on the young adult’s team are minimizing the importance of their involvement.
For most parents, the idea of their child getting older and making decisions for themselves is exciting but also quite scary. They worry about their child being able to lead a successful life and whether they will be treated fairly. They are well aware of the various levels of discrimination, bullying, etc. that their children can (and have been) be exposed to. In addition, parents worry about their children making decisions that may not be fully informed, which may prevent them from gaining access to important services and opportunities. All of these are realistic fears and can create tremendous anxiety for parents and caregivers. Unfortunately, many parents also never receive any guidance or instruction on how to help their young adult become more independent and self-determined, nor are many parents provided with support through this potentially difficult transition process. Research has indicated the importance of helping parents to maintain a confident outlook and reframing their ideas to ensure that they recognize their child and family’s important achievements during this time period (Abbeduto et al., 2004).
Therefore, clinicians and practitioners providing support for young adults with ASD should consider how they might offer support for parents as well. They should also be directed to any community resources or supports for families of transitioning youth with ASD, especially since most typical supports focus on the needs of families of younger children with ASD. It will be critical to listen openly to the concerns of families and avoid immediate judgment. Parents should also be recognized as important members of the child’s support team, assuming that the individual with ASD also indicates their preference for parents to be included. They should be engaged and incorporated in decision-making sessions, as well as supported in changing their parental style to allow for their child to become the final decision-maker on the team. Overall, parents would benefit from education and support in assisting their child in becoming more independent: developing and following through with goals, establishing independent living skills, and facing natural consequences. This can be an especially difficult process, as parents may quickly recall past instances in which dealing with natural consequences resulted in a tremendous loss for their child. Nonetheless, it is a critical component of becoming an adult. Finally, in general, parents should be supported in re-examining their communication process with their child in order to hopefully develop a system that allows the child to be increasingly independent while ensuring that the parent is kept as informed as is needed.
Brian Freedman, PhD, is Director of the Transition, Education, and Employment Model (TEEM) Unit of the Center for Disabilities Studies at the University of Delaware. To learn more, please visit www.udel.edu/cds/teem.html.
Abbeduto, L., Seltzer, M.M., Shattuck, P.T., Krauss, M.K., Orsmond, G.I., & Murphy, M. (2004). Psychological well-being and coping in mothers of youths with autism, down syndrome, and Fragile X syndrome. American Journal on Mental Retardation, 103, 237-254.
Gerhardt, P. & Lainer, I. (2011). Addressing the needs of adolescents and adults with autism: A crisis on the horizon. Journal of Contemporary Psychotherapy, 41, 37-45.
Taylor, J.L. & Seltzer, M.M. (2011). Changes in the mother-child relationship during the transition to adulthood for youth autism spectrum disorder. Journal of Autism and Developmental Disorders, 41, 1397-1410.