The families who took part in the research:
  • 14 families, living in the same London borough.
  • 19 autistic children (aged 3 – 21 years) with 29 children (aged 3 – 22 years) in total.
  • All had at least one child with a diagnosis of autism. Some also had ADHD, dyslexia, learning disabilities, speech delay, sensory needs, complex mental health needs.
  • One parent was autistic and several more thought they (or their partner/ex-partner) might be.
  • Some married/partnered parents and some single parents.
  • Some homeowners and some rented (social housing or private).
  • Some parents worked part-time or full-time, and others were full-time carers.
  • Families identified as: White British, Black British, Black African, Turkish, Jewish, Caribbean, British Bangladeshi, White European, White Other, Irish Traveller, and Mixed Race (various).
  • All interviews took place between April and July 2019 and were conducted in English.
  • Parents were paid for their time.
The SEND professionals who took part in the research:
  • 4 months observation with a local authority SEND service, between November 2018 and February 2019.
  • 53 interviews with SEND professionals, including: local authority SEND staff, Children and Adolescent Mental Health Services (CAMHS) staff, and school SEN coordinators (SENCos).
  • SEND professionals were not paid for their time, because interviews took place during work hours.
Funding and ethics clearance for the research:
  • Funded by the Economic and Social Research Council (Grant numbers ES/J500124/1; ES/X005577/1) and the QMUL Postgraduate Research Fund.
  • Approved by the Research Ethics Committee at Queen Mary University of London (QMREC2191a and QMERC2018/63).