The Cost of Caring: The Impact of Autism on Parental/Caregiver Workforce Participation

Background:

Previous research has indicated that parents (or other caregivers) often reduce their workforce participation in order to care for their child on the spectrum. Limited information is available, however, on the characteristics of children that are associated with reduced parental employment, or parents’ reasons for reducing their employment. Additionally, previous studies have focused on children, with little attention given to the workforce-participation restrictions of parents of adults on the spectrum.

Objectives:

This study explored (a) the percentage of parents who reduced their workforce participation in order to care for their son or daughter on the spectrum, (b) characteristics of the child or adult on the spectrum that can impact their parents’ workforce participation, and (c) parents’ reasons for reducing their employment.

Methods:

In response to an online survey, responses were received from 732 parents including parents of 85 children yet to start school, 403 primary school-aged children, 175 secondary school-aged children, and 69 young people who had left school. Descriptive and inferential statistics were used to analyse data on parental workforce participation rates and the characteristics of young people that impact their parents’ workforce participation. Content analysis was used to analyse the open-ended responses on the parents’ reasons for their need to reduce their workforce participation.

Results:

Sixty-eight per cent of parents of children yet to start school, 67% of parents of primary school-aged children and 60% of parents of secondary school-aged children said that they work less hours or did not work, because of the need to care for their child on the spectrum. A significant minority (47%) of parents of adolescents and adults on the spectrum who had left school, had reduced their workforce participation to care for their son or daughter. Co-occurring anxiety disorders in the primary and secondary school-aged children and the young adults were significantly associated with the parents’ reduced workforce participation. Specific learning disorders in the primary school-aged children and attention deficit disorders in the young adults were also significantly associated with their parents’ reduced workforce participation. The reasons that parents gave for reducing their employment included (a) frequently reduced school attendance due to school refusal and/or parents being asked to collect the child early, (b) a lack of autism-friendly after-school and vacation care, (c) the need to take the child to appointments, (d) the need to home-school the child, and (e) the child’s mental health issues. Parents of adults who had left school also described the need to provide support for mental health issues, the need to transport the young person to work or tertiary education, as well as the need to support the young person in basic activities of daily living. The financial impact of reduced parental employment was highly concerning for many families.

Conclusions:

These parental perspectives are enlightening in terms of the support needs of families. Additional supports such as autism-friendly schools, after-school and vacation care services, mental health services, and a range of programs for young adults would reduce the burden on families and enhance their workforce participation.