Raising a child with an Autism Spectrum Disorder: 'If this were a partner relationship, I would have quit ages ago'

Background. The aim of the study was to determine the experiences of parents having a child with Autism Spectrum Disorder (ASD) and what kind of support parents would like to receive in primary care. Methods. Interviews were held with 29 main caregivers, in combination with a standardized questionnaire on quality of life. Results. Virtually all parents experienced tremendous shortcomings as a caregiver of their affected child and therefore felt guilty both towards their child with ASD and towards their other children. Most parents felt the burden was beyond their possibilities. The perceived physical and mental health was rather fair. They also wished that healthcare professionals should properly listen to them and must share their decisions instead of making decisions without them having a say. They mostly appreciated practical tips for every day handling the child. Conclusions. The burden on parents of raising a child with ASD is too high. Parents like caregivers to listen carefully to their experiences and to facilitate shared decision-making. Outreaching professionals who provide practical assistance are most highly valued.