Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

Abstract

AbstractBackgroundAutistic people experience significantly poorer physical and mental health along with reduced life expectancy.AimTo identify self-reported barriers to primary care by autistic adults compared to parents of autistic children and non-autistic adults and link these barriers to self-reported adverse health consequences.Design and SettingFollowing consultation with the autistic community at an autistic conference, Autscape, a quantitative and qualitative survey was developed.MethodThe self-report survey was administered online through social media platforms.ResultsThe 57-item online survey was completed by 507 autistic adults, 196 parents of autistic children and 157 control subjects. 79.7% of autistic adults, 52.8% of parents and 36.5% of controls reported difficulty visiting a GP. The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72.2%), difficulty making appointments by telephone (61.9%), not feeling understood (55.8%), difficulty communicating with their doctor (53.1%) and the waiting room environment (50.5%).Autistic adults reported a preference for online or text based appointment booking, facility to email in advance the reason for consultation, first or last clinic appointment and a quiet place to wait.Increased adverse health outcomes reported by autistic adults correlated with difficulty attending, including untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations, and untreated potentially life threatening conditions.ConclusionReduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives and communication needs. Adjustments for autism specific needs are as necessary as ramps for wheelchair users.How this fits inAdverse health outcomes are common among autistic people and so it is important to understand how we can promote access to primary care.This cross sectional study indicates that 79.7% of autistic patients (compared to 36.5% of controls) reported difficulty visiting a GP.Common barriers were: deciding if symptoms warrant a GP visit, difficulty using the telephone to book appointments, not feeling understood and difficulty communicating with their doctor.Common suggestions to promote access included: online or text based appointment booking facility, emailing in advance the reason for consultation, providing first or last clinic appointment and having a quiet place to wait.