“I can't say that anything has changed”: Parents of autistic young people (16-25 years) discuss the impact of the Children and Families Act in England and Wales
Background. In 2014, changes to special educational needs and disability (SEND) legislation were introduced in England and Wales. These reforms aimed for young people and their families to receive the help and support they need, have a say regarding their support needs, and achieve better outcomes. We evaluated the impact of these reforms, five years on, from the perspective of parents of autistic young people (16-25 years). Specifically, we used these reforms as a framework to identify the support parents desired for their autistic children as they transitioned to adulthood.Method. We collected parents’ views and experiences about the impact of the SEND reforms on them and their autistic children. In total, 115 parents of autistic young people in England and Wales participated, via an online survey and/or interview. Results. Despite supporting the principles of the reforms, parents reported that their experiences, and those of their children, had not improved since they were introduced. Parents added that the reforms (which introduced the potential of support for young people up until the age of 25) were simply delaying the inevitable, and there was still limited support for them and their children as they transitioned to adulthood. Parental advocacy, rather than the needs of the autistic young person, was felt to be linked to outcomes.Conclusions. We discuss lessons that can be learned – in England and Wales, but also internationally – to ensure that every autistic young person, irrespective of family background, can access high quality support and achieve their goals.