“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

Abstract

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.

The transition to adulthood for autistic young people with additional learning needs: the views and experiences of education professionals in special schools

“…What we urge, however, is that the responsibility for creating these workplace-school partnerships should not fall solely to education professionals, who already feel the responsibility lies heavily with them. Likewise, the burden of organising these should not rest on parents, whose role in advocating for their children's needs can take a huge toll on their health (Crane et al, 2021b). Partnerships between education professionals, employers, parents and young people themselves will be crucial in this regard.…”

“…While it is essential to elicit the views of education professionals on the post-16 educational experiences of autistic young people with additional learning needs, it is important for future work to complement this with the views of both young people and their families. Although there has been some work to this effect with parents (Crane et al, 2021b) and young people (Gaona et al, 2019), it can be challenging to elicit the views of autistic young people with additional learning needs (some of whom are unable to participate in verbal interviews). A further limitation of our work is that participation in the research was voluntary, and the schools that opted to take part tended to be those that were high performing (rated 'Good' or 'Outstanding' by Ofsted; and, in many cases, well-financed).…”

“…Data were analysed qualitatively, using both content analysis and thematic analysis. This research was part of a broader project, commissioned by the DfE, examining the impact of the Children and Families Act and associated SEND Code of Practice from the perspectives of autistic young people (Crane et al, 2021a), parents (Crane et al, 2021b) and education professionals (reported here).…”