Doherty, Neilson, O'Sullivan, Carravallah, Johnson, Cullen and Shaw (2022)

This article addresses the gap in the literature surrounding barriers to primary care for Autistic people. The authors consulted with the Autistic community, at the Autscape conference, to develop a self-report survey. The survey contained 52 items and was offered online to an international participant group. 507 Autistic people responded to the survey and 157 non-Autistic people. 80% of Autistic people said they had difficulty visiting a GP – only 37% of non-Autistic people reported this. The largest barriers for Autistic adults accessing healthcare were 72% deciding if symptoms needed a trip to the GP, 62% making appointments by telephone, 56% not feeling understood, 53% difficulties in communication, 51% the waiting room environment. Autistic adults said they preferred online or text-based appointment booking, the first or last clinical appointment and a quiet place to wait. Reported health outcomes due to barriers were untreated physical and mental health conditions, not attending referrals or screening programmes, requiring more extensive treatments or surgery due to lack of treatment in an appropriate amount of time. The authors conclude that work to overcome these barriers is vital for Autistic people’s long term health outcomes.

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