Needs and Experiences of Family Caregivers of Individuals With Autism Spectrum Disorders Across the Lifespan

Abstract

AbstractBoth service needs and needs of the caregiver may differ across the lifespan for individuals with autism spectrum disorder (ASD). As individuals with ASD age, they may need different services, which can place different burdens on the family. The present study aimed to determine the needs of both the individual with ASD and the family caregiver across the lifespan, as well as what experiences are important to families that may not be captured by quantitative measures. Data for the present study were taken from a large, online survey of family members of individuals with ASD. Participants were primarily mothers, with children ranging from early childhood to adulthood. The survey used a list of various services that could be used by individuals with ASD and the Family Needs Questionnaire to examine service needs and usage. Service needs and usage were compared by age category (childhood, adolescence, and adulthood). Most categories of service needs and usage differed by age, although the percentage of unmet service needs was quite high across all ages. Family members of adolescents or adults tended to report fewer individual needs than did family members of children. In open‐ended responses, families frequently discussed lack of services, worry about the future, and challenges with family and social relationships. Overall findings indicate a still‐high level of unmet service needs for individuals with ASD and their families. Although most basic health needs are met, more specific needs, such as therapy services and employment services, are received by comparatively few families. This has the potential to negatively impact families as the child with ASD ages, despite caregivers reporting fewer personal needs for older individuals.