Introduction: Parenting Children with Autism Spectrum Disorders During the Transition to Adulthood

This issue of Narrative Inquiry in Bioethics is devoted to the personal stories of parents or guardians whose children with ASDs are transitioning or have transitioned to adulthood. The same parents who navigated the educational and health systems with little support twenty years ago once again find themselves as pioneers in somewhat unchartered territory. Transition to adulthood, again, presents new terrain without well–defined parameters or reliable expectations for individuals with ASD and the parents who support them. At current, very little has been studied or written about the unique perspectives of parents during transition. What does exist suggests that parents of individuals with autism perceive their experiences as novel, even as compared with parents of children with other kinds of disabilities (Woodgate, Ateach, & Secco, 2008).

One in 88 children is estimated to have an autism spectrum disorder (ASD) in 2012, a 78% increase since 2007 (Centers for Disease Control and Prevention, 2012). Although a variety of factors are certainly involved, the rate of diagnosis of individuals with ASDs has increased dramatically over the last twenty years and by all accounts the level and quality of support in health and social systems have lagged behind.

While support and interventions have progressed significantly over time, attention on older populations has played a secondary role to early interventions. The proliferation of young people with ASD has outpaced supportive efforts at all levels. ASDs are usually diagnosed in childhood and funding for and access to research and interventions for children have resulted from, in no small part, the zealous efforts of parents. As this growing population of individuals with ASDs transitions to adulthood, finding appropriate supports and interventions have proven more elusive and more complicated. The hallmark symptoms of ASDs include social skill deficits and communication and behavioral difficulties—all traits that especially strain typical teenage and young adult relationships. Recent research backs up these difficulties and indicates that individuals with ASDs fare relatively poorly in traditional measures of independence such as employment, education and social relationships. Parents like the authors in this symposium continue to work to help their teenage and adult children navigate the demands, challenges and rewards of adulthood and independence with all its uncertainties and surprises.

The editors of this issue of Narrative Inquiry in Bioethics solicited the personal stories of the parents who have navigated this transition. The call for stories was distributed to autism awareness groups, autism list–serves, bloggers, and social media outlets. Personal appeals to thought leaders and advocacy groups to distribute the call for stories also produced a number of responses. The people and organizations that passed along our request and responded are too numerous to list here but our gratitude is sincere: their help made this issue possible.

We hope the stories will give readers a sense of what parents find rewarding as well as especially challenging during this time and what actions and supports make a difference for the better. Stories about any aspect of the transition were welcome, ranging from navigating the health system to issues surrounding romantic relationships. We welcomed parents’ thoughts on any topic, including gender, level of function, provider behavior, stigma, friendship, services (existing or needed), decision making, independent living, co–morbidities, expectations, work, school or relationships.

These topics and more emerged. Stories primarily came from mothers; however one father and one uncle also contributed. Consistent with diagnostic trends, most tell stories of parenting young men. The 12 stories that were selected for this edition represent just a fraction of the diverse set of issues, needs and commonalities of this growing population of adults. We received more stories than we could put in print. Twelve were selected to represent a range of experiences. Many other stories were so powerful that they will appear on–line in the Project MUSE edition of the journal.

Commentators also represent a diverse group of professionals whose work includes direct care and support of individuals with ASD and their families, education, research, scholarship and advocacy. Some of our commentators also have a child or a loved one with ASD.

Patricia Bashe...