An autoethnographic account of the challenges of parenting an autistic child in the UK

Drawing on diaries, records and notes, I use autoethnography and vignettes to explore our experiences of parenting an autistic child (AJ) in the UK context, highlighting how professionals continually blamed our parenting rather than focusing on the link between autism and behaviour. Professionals labelled us as 'ineffective parents' and not only blamed us for our child's behaviour but also disregarded our belief that the diagnosis of attention deficit hyperactivity disorder (ADHD) did not quite fit our child's profile. He was diagnosed with autism spectrum disorder and ADHD at the age of seven, but later changed to autism spectrum disorder with pathological demand avoidance (PDA) traits by the age of eleven after our continual questioning of the ADHD diagnosis. As well as this, stereotypes about how an autistic person should behave seemed to influence perceptions about what strategies would work for AJ. When these did not work, then parental blame was the discourse that emerged (despite us having an older child who was doing well educationally and considered to be a model student). We seemed to be in a continual battle with professionals rather than working alongside us as partners. This added to stress and trauma placed on us as parents, and also exacerbated the stress and anxiety of AJ himself. By documenting our stories, I hope that more understanding and training might help clinicians, teachers, occupational therapists, psychologists, family support workers and others to work in partnership and help support such families to mitigate stress and to empower families and children in a more positive environment.