Exploration of caregiver experiences of reported first signs of autism.

ABSTRACT

AIM: This study explored caregiver-reported first signs of autism and caregiver experiences of reporting these signs to health professionals using a multiple methods approach. BACKGROUND: Within the Australian context, children who have been diagnosed with autism represent a significant proportion of individuals requiring access to disability services. Due to the importance of accessing early intervention services to support future outcomes, it is vital that first signs are noticed, reported, and the diagnosis process begun as soon as possible. METHOD: Phase 1 of the study included a secondary analysis of a survey of caregivers, while phase 2 consisted of focus groups of caregivers of children on the autism spectrum. RESULTS: Survey data indicated that most children were aged 12-18 months when first signs were noticed, with first signs noticed earlier in females than males. Children were age 2-6 years when caregivers sought advice and received a diagnosis. Uncertainty and a lack of information often left caregivers feeling frustrated and under-supported when seeking advice and diagnosis. Despite first signs being recognised early by caregivers, barriers to information and seeking help and support resulted in significant delays in receiving a diagnosis. CONCLUSIONS: The study provides valuable consideration of the caregiver perspective regarding reported first signs of autism and the additional challenges faced by caregivers living in regional and rural areas. By being more informed of what caregivers first notice, health professionals may also be able to provide better support and advice to caregivers in regard to access to diagnosis and early intervention services.