A Statewide Needs Assessment Survey for Adults with Autism Spectrum Disorder

Background:  

Autism Spectrum Disorder (ASD) is a lifelong multisystem neurological disorder that affects social communication, perceptuo-motor, cognitive, and behavioral skills of individuals across the lifespan (Roux et al., 2015). In spite of the growing number of children with autism entering adulthood every year, surprisingly, there is a dramatic decline in access to services for these youth and adults. Around 40% of youth with autism do not receive any medical services, mental health counseling, or speech therapy once they reach early adulthood (Shattuck et al., 2011).    

Objectives:  

In 2011, the Center for Disabilities Studies (CDS) at the University of Delaware conducted a statewide comprehensive needs assessment survey for adults with ASD. This survey was designed to obtain information about critical areas related to the health and life status of individuals with ASD in order to develop a strategic plan to improve adult services for ASD.

Methods:  

91 caregivers of adults with ASD as well as 18 high-functioning adult self-advocates with ASD between 20 and 50 years of age filled out a caregiver survey in online or paper form. The survey covered several aspects of the lives of individuals with ASD including their primary diagnosis, additional comorbidities, health service needs, educational status, employment status, living conditions, and participation in the community.

Results:  

90% of the low-functioning group had a primary diagnosis of ASD whereas 67% of the high-functioning group had a primary diagnosis of Asperger Disorder. More than 60% of individuals in both groups had additional comorbidities, most commonly developmental delay, learning disability, anxiety, intellectual delay, depression, and attention deficit hyperactivity disorder. In the low-functioning group, over 75% of individuals lived with parents or in group homes, only around 50% of individuals had managed to obtain some high school education, and around 50% of individuals were unemployed. This group was independent in basic activities of daily living (ADLs) such as feeding, dressing, and toileting but required help in instrumental ADLs such as cooking meals, managing money, and getting around in the community. In the high-functioning group, around 50% of individuals continued to stay with parents, around 75% of individuals had some high school or college education, and only around 25% had a part time or full time job. In addition, this group had poor participation in community-based activities. Both groups identified the need for several different health care services including socials skills training, behavioral interventions, vocational training, mental health counseling, neurological services, and medication management.

Conclusions:  

Results of the survey confirmed the lifelong nature of impairments in individuals with ASD. Adults with ASD continued to demonstrate multisystem impairments that interfered with their ability to independently engage in activities of daily living, pursue meaningful employment opportunities, and participate in activities within the community. Our findings highlight the need for continued services into adulthood for youth and older adults with ASD.