Longtitudinal Outcomes of Adults with Autism
Odom, Ruble, McGrew, & Belkin
Background: Little is known about the lives of adults with autism and their parents. A 20-year follow-up longitudinal study is presented. Several outcomes were evaluated including adaptive behavior, medical issues, employment information, residential status, community inclusion, and self-direction. Parent outcomes such as caregiver burden and concerns for the future for their adult child with autism were also identified.
Objectives: To describe thelongitudinal outcomes of adults with autism and their caregivers.
Methods: A total of 16 parents/caregivers (Mage= 71; 34% of original sample; Ruble & Dalrymple, 1996) were located and agreed to participate; respondents were 12 mothers, two fathers, and two nonrelated caregivers from a Midwestern state. Most of the caregivers (62.5%) were married, and their spouse was also the parent of the adult with autism; three were widowed. The adults with autism were 14 males and 2 females (Mage= 42); 15 were White and one was Asian. Caregivers completed the Vineland Adaptive Behavior Scales and an adapted version of the National Core Indicators survey.
Results: Adaptive behavior mean scores were low for the adults (M = 27.9; SD = 14.5). Fifty-six percent received 24-hour supervision and 44% lived with their family. A minority shared a house (n = 38%) or lived in a group home (19%). Fifty-six percent lived in a residence financed by their family. The majority (75%) lived in their current home for more than 5 years. Individuals with autism were reported to be in fair (44%) to excellent (56%) health; however 63% had other medical conditions, including 31% who had seizures. Half of the adults were taking medications for behavior, anxiety, or depression. For services, the majority (69%) were receiving case management. Forty-three percent of the sample required supports for self-injurious or disruptive behavior.Twenty-five percent of parents reported a need for additional services. Only one family was receiving respite care. One adult with autism was competitively employed. Most outings (63%) involved family. They also went out for entertainment (73%) and to a restaurant (100%). All had siblings and 88% of individuals stayed in contact with siblings.
For parents, one-third reported missing work or neglecting other duties due to the care of their child. Thirty-eight percent reported mental and physical health effects and financial strain. Fifty-seven percent reported feeling sad or unhappy; and 50% reported feeling socially isolated. The chief concerns were worry about their child’s future (88%), followed by concern for their child’s living situation (81%) and availability of future services (75%).
Conclusions: These data describe the outcomes of adults who are nearing middle age. All are involved in community activities and in satisfactory health. Most surprising was that the majority of adults lived at home with their parents and family who provided financing for their housing. Effects on parents will continue as they ageand approach retirement or face declining health, with the most common concern beingproviding for the future for their adult child with autism.