‘It Wasn’t the Strategies on Their Own’: Exploring Caregivers’ Experiences of Accessing Services in the Development of Interventions for Autistic People with Intellectual Disability
Hughes, Roberts, Tarver, Warters-Louth, Zhang, Southward, Shaw, Edwards, Waite and Pearson (2023)
Autistic people with intellectual disability are more likely to experience anxiety that neurotypical peers. Anxiety in this group may present is distress and meltdowns, which can lead to families seeking support from health or support services. Accessing services may be difficult for families, in part due to the lack of research into evidence-based anxiety interventions for people with intellectual disability. This is compounded by people not receiving individualised support once in a service. This research explores the experience of caregivers accessing services for Autistic individuals with intellectual disability, and their thoughts and ideas when developing a new intervention for this population. Data was collected through interviews and focus groups with 16 caregivers of Autistic people with intellectual disability. Analysis was done through reflexive thematic analysis. Two sets of themes were discovered – five on service access experiences and three around caregivers’ considerations for anxiety interventions. The participants discussed that their experiences accessing services did not match their expectation, this reflected in their considerations for future anxiety interventions. The outcomes of the research suggest that interventions need to focus on embedding of peer support within services and flexibility to support family circumstances. Lastly skills need to be generalised across a person’s life course to improve outcomes.
