Growing Up With Autism: Challenges and Opportunities of Parenting Young Adult Children with Autism Spectrum Disorders

As the parent and stepparent of a child with autism, we witness a world that is quite different from parents with only neurotypical children. Tantrums don’t vanish after the age of three. Aggression is a way of life. Simple communication is a constant challenge. And dreams of a child’s future have to be altered and adapted. In the narratives that accompany this commentary, we see that the challenges of raising a child with autism do not necessarily diminish with age; they may, however, change because children with autism become adults with autism and this presents a new set of both challenges and opportunities.

The current epidemic of young children with autism is giving rise to yet another epidemic—the rising number of young adults who are autistic. As one of the authors here mentioned, “the system is in for a tsunami of new individuals needing medical care of all types, needing continued supports for housing and vocational training, communication, occupational and physical therapy” (Cornell). According to a recent study published in Pediatrics, “[y]outh with an ASD have poor postsecondary employment and education outcomes, especially in the first 2 years after high school” (Shattuck, 2012). With the rising number of children being diagnosed with autism, this employment disparity is likely to be exacerbated until or unless the workforce adapts to and accommodates the needs and skills of persons with autism.

The needs of young adults with autism are only recently beginning to receive more attention from the media. But for these children’s parents, this issue has always been personal. The emotions on display in these narratives are heartfelt—even raw at times—and seem to swell like the wave of a tsunami itself as parents are now confronting what should be the independence of adulthood. With barriers to employment, health care and housing, young adults with autism remain largely dependent upon their parents. While the topic of transition to adulthood for those with autism is a vast one, implicating the need for wide scale policy change, certain themes emerge in these personal narratives that we wish to focus on here, which may well serve as a guide for that change.

The Advocate Mother

The Advocate Mother is a common theme in many narratives of autism and the ones presented here are not different. In fact, nearly all of the narratives presented are written by mothers. Mothers in these narratives exemplify sacrifice, dashed hopes, and even heartbreak. Although there is steely determination in many of these narratives, there is also self–doubt, anxiety and guilt. As Laura Shumaker recounts the story of taking her adult son to Washington, DC, she experiences great anxiety when her son is mocked. She speaks of “the heavy feeling in [her] chest that mothers get when people laugh at their children.”

The advocate mother can easily become the overly consumed mother. Take, for example, the powerful narrative of Nancy Coughlin. She confesses that her daughter’s autism took over her life and the life of her family: “my own mental health was disintegrating, as was my marriage, and in our family’s last–ditch effort to ease the burden we bought a second home; a cheap little place just a few blocks down the road from where we lived. We called it our ‘respite house’.”

Others confess that raising a child with autism becomes a “full time job.” (Van der Poel). And the demands of this job do not diminish simply because the child reaches adulthood; it may, in fact, become not only a personal job for some parents but their vocation as well. For instance, Anonymous Four states, “I felt so strongly that parents and young adults needed to know about CIP [College Internship Program], that I applied for a part time job there where I could utilize my background in marketing to help parents like me find the services their son or daughter may desperately need.”

While the inability to express appropriate emotions is a hallmark feature of autism, it seems that mothers in particular compensate by...