Exploring the Impact of Autism Diagnosis for Adults with a Learning Disability and their Families

Context: The prevalence of autism diagnosis has significantly increased over the last two decades and this is anticipated to continue. Research has been completed regarding the experience of receiving a diagnosis of autism in the mainstream population; however this has not included people with a learning disability despite the common co-occurrence. Aim: This study aims to explore the impact of receiving an autism diagnosis for people with a learning disability and their family members. Method: A qualitative design was used consisting of semi-structured interviews. Participants were adults with a learning disability and their family members who were recruited from an NHS Learning Disability Service; a total of 18 interviews were completed. Data was analysed using reflexive thematic analysis. Results: The findings consisted of five main themes; Journey to Diagnosis, Understanding, Wellbeing, Support System, and Language. The findings suggest autism diagnosis impacts people with a learning disability and their family members individually and in their interactions with each other. This included gaining greater understanding and acceptance of themselves or their relative, and increased tolerance. Discussion: Results showed similarities to study findings exploring autism diagnosis in people without a learning disability, however highlighted differences for the learning disability population such as the support they receive and the applicability of assessment tools. Implications: This thesis highlights the need for greater inclusion of people with a learning disability in autism research. Recommendations include post-diagnostic support for those that would benefit, training for clinicians that support this population, and the possible development of learning disability specific autism assessment tools.