Primary Care Health Checks for Autistic Adults: A Qualitative Study of Autistic Adults’, Carers/Supporters’, and Primary Care Staff’s Perspectives
Hannah Merrick, Helen Taylor, Barry Ingham, Tracy Finch, Ruby Herrington, Sarah Al-Ashmori, Carole Buckley, Sally-Ann Cooper, Cristina Fernandez-Garcia, Shona Haining, Rhianna Lees, Nicholas Lennox, Sebastian Moss, Tim Nicholls, Christina Nicolaidis, Malcolm Osborne, Dora M. Raymaker, Tomos Robinson, Clare Scarlett, Anna Urbanowicz, James M.S. Wason, Colin Wilson, Jeremy R. ParrBackground:
Autistic adults face health inequalities and barriers to accessing primary care. Health checks may identify unmet needs and reduce disparities. This study explored the experiences of autistic adults, carers and supporters, and primary care staff receiving or delivering a co-designed biopsychosocial health check for autistic adults in National Health Service (NHS) primary care in England.
Methods:
We conducted semi-structured interviews with 24 autistic adults, 5 carers/supporters, 11 health professionals, and 4 people undertaking administrative duties (
Results:
We generated three themes: (1) Negotiating and facilitating adjustments to enable access to care, (2) creating ways for sharing information and listening to enable holistic care, and (3) meeting needs in a personalized way. Autistic adults valued personalized adjustments (facilitated through a pre-appointment questionnaire) and being able to discuss their health and well-being in a comprehensive and personalized way without judgment. Carers/supporters valued involvement and highlighted how they supported communication and provided emotional support to the autistic adult. Health professionals appreciated training, the pre-appointment questionnaire, and clinician template in enabling them to provide holistic, personalized care. Reported impacts included identifying unrecognized concerns, new referrals, medication adjustments, improved understanding of health and well-being, and enhanced engagement with primary care. Some people experienced challenges including inconsistent delivery of requested adjustments and logistical barriers to arranging appointments.
Conclusion:
Autistic adults, carers/supporters, and primary care staff generally experienced the health check positively, with participants describing improved knowledge of access to primary care, better patient satisfaction, and positive health, well-being and care outcomes. Findings support the feasibility and value of embedding structured primary care health checks for autistic adults.