A quarterly publication of the Autism Research Institute

The Autism Research Review International is quarterly publication of the Autism Research Institute

Winter 2024 | Number 1, Volume 38

Life-long care needs impact family members’ quality of life

Parents and other relatives often provide life-long support for adults with autism spectrum disorders (ASD), and a new study from Germany suggests that this support impacts the family members’ mental and physical health.

Sophia Dückert and colleagues note, “Family caregivers of autistic adults represent a highly underrecognized population in clinical research, healthcare, society, and policy.” To assess these caregivers’ mental and physical quality of life, the researchers surveyed 149 family members providing support to adults with ASD. In addition to providing sociodemographic information, participants completed assessments related to caregiving and health-related quality of life.

The researchers report, “Family caregivers of autistic adults reported significantly lower physical and mental health-related quality of life compared to the general population.” In particular, higher subjective caregiver burden (a measure of the demands, challenges, and stressors experienced by caregivers) and greater severity of the care recipient’s ASD correlated with poorer mental quality of life.

The researchers also note that “compared to family caregivers of patients with severe mental illness or Down syndrome, participants in the current study reported the lowest mental health-related quality of life scores.”

They conclude, “Healthcare providers working with autistic adults and their families should be aware of the potential impairment of caregivers’ health status and form a routine to assess and monitor caregivers’ health-related quality of life, for example, as part of the intake assessment or in primary care.”


“Health-related quality of life in family caregivers of autistic adults,” Sophia Dückert, Sabine Bart, Petia Gewohn, Hannah König, Daniel Schöttle, Alexander Konnopka, Pascal Rahlff, Frank Erik, Kai Vogeley, Holger Schulz, Nicole David, and Judith Peth, Frontiers in Psychiatry, December 18, 2023 (free online). Address: Sophia Dückert, Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany [email protected].