Resilience and the Narratives of Parents of Adults with Autism Spectrum Disorders

The prevalence of autism spectrum disorders (ASDs) is on the rise; the most recent report from the Autism and Developmental Disabilities Monitoring Network (2012) indicated a prevalence of ASDs of one in 88 children. This was a 78% increase from reported prevalence rates in 2002, when the rate was one in 150. Major health organizations have been emphasizing the importance of early identification (Johnson, Myers, & Council on Children with Disabilities, 2007) to increase access to early intervention services, which are most effective when implemented before age three (Rogers & Vismara, 2008).

The bulk of autism research has been focused on children, particularly young children. Given the growing identification and prevalence of ASDs, there will be more and more adolescents and adults with ASDs in the near and long term future. This issue of Narrative Inquiries in Bioethics is important because of its focus on an underrepresented area in the literature. The constraints of current health care delivery systems do not allow for providers to spend significant amounts of time with their patients. Furthermore, hearing first person narratives can be valuable by informing health care professionals about the experiences that parents (and by extension, the individual with an ASD) have experienced.

As a licensed clinical psychologist with over two decades of experience with children, adolescents, and adults with ASDs in a variety of settings, I have a professional perspective on autism. As the older brother of Omar, a 38–year–old adult male with autistic disorder, I also have a lifetime of personal experiences of autism. As long as I can remember, I have had a brother with autism. I hope this unique perspective as both a behavioral health care provider and a family member of an adult with an ASD allows me to comment on these narratives in a thoughtful manner.

Seeing Beyond Autism: Multiple Identities

Many parents commented on how their child was more than just autism or Asperger’s; they reflected on the strengths, unique experiences, and perspectives of their child. The narratives are rich in their desire to see the whole being of their children. Anonymous One writes:

Another thing, and I think every parent will agree with this—teachers, school staff, health care industry staff, doctors and every one that comes into contact with an ASD individual—take the time to get to know them. It may be difficult and some may appear non–caring and rude. You must overlook this and look to the person underneath. They are great people. They have been through stuff and it means so much to them. Like I said—parents, you know this. Please remember it when times get tough.

Mark Osteen wrote about his son Cameron as they were making the decision to place their son in a residential placement: “I felt proud. It was like he was being recruited for college. And I am just as proud of him, and love him just as much, as if he were. What I hate is talking only about his ‘disability.’ I hope they see his good qualities. How smart he is. How funny he is. How charming he is. How strong he is.”

Understanding the multiple identities of individuals with ASDs is important for parents so that they are not solely focused on the autism diagnosis. The talents and skills of the young adults described are remarkable. Anonymous One’s son David became a computer engineer at 13, reportedly “he was the youngest person in the United States to do so at such a young age.” Lori Centineo’s son Nathaniel is a poet, a rock climber, and skilled at sailing. Virginia Clapp’s son Nathaniel is a “chess genius”, a talented juggler “with the ability to juggle seven balls, which he told me is ‘insanity in a nutshell’,” and an origami expert. David McDonald’s nephew grew from a teenager who spoke only 30 words to speaking thousands of words and ultimately becoming a world traveler. Anonymous Four’s son Sam is “practically an expert” in earth sciences.

Seeing beyond the autism is not always easy. Given the serious challenges...