‘It wasn’t the strategies on their own’: Exploring caregivers’ experiences of accessing services in the development of interventions for autistic people with intellectual disabilities, (2024). Hughes J. , Roberts R., Joanne Tarver J , et al.

Open access article: (https://journals.sagepub.com/doi/full/10.1177/13623613231196084)

Abstract
Autistic individuals with intellectual disability are at greater risk of experiencing
anxiety than their non-autistic peers without intellectual disability. Anxiety in
this group may present as behaviour that challenges, often leading families to
reach out to healthcare or support services. However, many families experience
difficulties accessing services and, due to the lack of research into evidence-based
anxiety interventions for people with intellectual disability, may not receive
individualised support once in a service. This study explored caregivers’
experiences of accessing services for autistic individuals with intellectual
disability, and their considerations when developing new interventions for this
population. Interviews and focus groups were completed with 16 caregivers of
autistic people with intellectual disability. Reflexive thematic analysis was used to
develop five themes about service access experiences, and three themes about
caregiver considerations for anxiety interventions. Caregivers reported that their
experiences of accessing services did not meet their expectations, and
considerations for future anxiety interventions were often reflective of this.
Interventions being flexible to family circumstances to aid accessibility, the
embedding of peer support in services, and skills that can be generalised across
the lifespan could be applied when aiming to improve outcomes and develop
interventions for this under-served population.

Citation: Hughes, J., Roberts, R., Tarver, J., Warters-Louth, C., Zhang, B.,
Southward, E., Shaw, R., Edwards, G., Waite, J., & Pearson, E. (2024). ‘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. Autism, 28(5), 1231-1244. https://doi.org/10.1177/13623613231196084