A systematic review of autistic adults' experiences of healthcare in the UK ; and, An empirical study of autistic mothers' experiences of statutory services when acting on behalf of their autistic children

Autistic Spectrum Condition is a lifelong condition which impacts on social communication, restricted patterns of behaviour and differences in thinking patterns and sensory experiences, all of which are important elements to consider when seeking support from healthcare and other statutory services. To date much of the research into autistic experiences have focused on those of children, those with intellectual disabilities or those of non-autistic carers and professionals supporting autistic people. This research aims to bring the focus onto the experiences of non-autistic adults who do not have a co-occurring intellectual disability both when accessing healthcare for themselves and when advocating on behalf of their autistic children. These are issues of particular importance to the lead researcher who is herself an autistic adult without a co-occurring intellectual disability, and the parent of an autistic child. Paper 1 presents a systematic review of qualitative research into the experiences of autistic adults without a co-occurring intellectual disability when accessing healthcare within the UK. Previous research has focused on the experiences of autistic adults from around the world, and the purpose of this research was to offer a more focused look at the experiences of autistic adults living in the UK. This is to ensure that the findings and recommendations are specific to the UK healthcare system. A meta-ethnographic approach was used with twelve papers included in the final analysis. Three superordinate themes were identified: Professionals lack of knowledge can be damaging; Need to reduce processing demands, and Adaptation to improve engagement. The impact that these experiences have on the wellbeing of autistic adults accessing healthcare in the UK, and on their ability to engage with treatment, can ultimately be damaging to the individual and this came through in the research as a key consideration. This damage may come in the form of misdiagnosis, inadequate or inappropriate treatment being delivered, overwhelming environments and inaccessible systems. The first theme regarding the lack of autism knowledge and understanding from healthcare professionals, along with autistic adults' differences in communication and sensory experiences indicate there is a need for improved training developed with autistic adults. Adaptations that are specific to the needs of autistic adults should also be considered. Paper 2 uses interpretive phenomenological analysis to investigate the experiences of autistic parents when advocating for their autistic children. Being a parent is an important part of adult life for many people, including autistic people. Many parents of autistic children can find getting the right support for their children from healthcare and education difficult. Knowledge is currently poor about how this is experienced by parents who are also autistic themselves. Ten autistic mothers with autistic children in mainstream education were interviewed about their experiences of seeking support for their autistic children from services such as healthcare and education. Participants talked about finding the overall system being the main problem, rather than the individuals working in it, and about needing to fight to get the right support for their children. These are points that non-autistic parents have also raised before. Participants also talked about feeling judged and stigmatised for being autistic, and about struggling to manage sensory and communication difficulties, which is something that has not been talked about by non-autistic parents. Improving services to offer better support to autistic families is important and can be achieved through better training. This training should be developed and run by autistic adults and should focus on the positive aspects of autism, rather than the negative. These papers offer a look at the autistic experience of accessing services from the perspective of autistic parents, which is not a perspective that has had a lot of focus previously, and with a focus on autistic adults' experiences specifically in the UK, allowing for recommendations that are specific to the UK healthcare system. The findings from these papers have clinical implications for the ways in which services are set up and healthcare professionals are prepared for working with autistic adults. They also provide some insight into factors which may negatively impact on wellbeing for autistic adults, and reasons why they may present in mental health services, which is directly relevant to clinical psychology.