Complicated Launching: How Families of Young Adults with Autism Navigate Expectations of Increased Independence

Background and Purpose: American culture often considers age 18 to be the appropriate time for young adults to leave home or begin to prepare for independence from their families.  Some experts urge families to strive to launch young adults with autism at 18 or within a few years.  They argue that young adults with autism are often aware of this typical launching age and wish for the same level of independence as their peers.  Additionally, their parents will not live forever, so it makes sense to start the move towards independence at what is considered the socially appropriate age. 

Methods: This study uses qualitative data from parents of young adults with autism to explore the complications of launching this population. Fifty-one parental caregivers ages 50 to 73 (46 mothers, 5 fathers) from 13 states participated. Semi-structured interviews were conducted by telephone to understand parents' perspectives.  Interviews were transcribed and analyzed using grounded theory techniques and line-by-line analysis using Atlas.ti 7 software.

 Results: The data reveal two trends among the families.  One trend reported by parents is that they perceive an inability to launch.  A second, less common, trend is that some families begin the launching process when young adults with autism attend college, either as residents or commuters, or gain employment in their communities. Both trends contain complicating factors. The majority of parents (N = 42) report a form of failure or inability to launch because of a variety of factors. Respondents discuss obstacles, such as the severity of the young adult’s disabilities, the extreme lack of resources in their community to facilitate independence in work or housing, and parents’ and or the young adults’ fears about problems that could ensue if the young person becomes more independent of their parents. When young adults with autism go to college, they often lack the executive functions or social skills to succeed or even to stay safe and healthy.  Parents perceive that, due to laws protecting confidentiality, they are unable to obtain information from the educational institutions that would enable them to help and protect their children.  In addition, parents cannot accompany their young adults to job interviews or to work sites, so they cannot smooth the way to facilitate success.  Young adults with autism often end up unemployed or underemployed.  Parents related stories of a pattern of protectiveness that they believe their young adult children required.  The families were accustomed to this protective pattern, and they usually believed it was still needed.  Parents also shared guilt about not doing enough as well as anger about deficiencies in available services.

Implications:  Several policy and resource issues exist that seriously compromise the services available to support independence for young adults with autism.  It is tempting to assert that changes in the family system or in parental attitudes would facilitate better launching, but adaptations of the family system might be considered a luxury for the few families that find viable options to support the independence of their young adults with autism.