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

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Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Gallagher, L. (2020). Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study [Preprint]. openRxiv. https://doi.org/10.1101/2020.04.01.20050336

Publication date: 6 Apr 2020 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
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Authors

Publication authors
7
Publication authors identified as autistic
3 / 7 (42.9%)
  1. Mary Doherty *
  2. Stuart Neilson
  3. Jane O’Sullivan
  4. Laura Carravallah *
  1. Mona Johnson *
  2. Walter Cullen
  3. Louise Gallagher

Abstract

Abstract Background Autistic people experience significantly poorer physical and mental health along with reduced life expectancy. Aim To 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 Setting Following consultation with the autistic community at an autistic conference, Autscape, a quantitative and qualitative survey was developed. Method The self-report survey was administered online through social media platforms. Results The 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. Conclusion Reduction 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 in Adverse 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.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
44
Total cited references integrated for this publication.
Cited references with an identified autistic author
6 / 44 (13.6%)
Cited author occurrences identified as autistic
16 / 170 (9.4%)
Among occurrences linked to AutiHub author records: 16 / 82 (19.5%). Distinct cited authors identified as autistic: 6 / 136 (4.4%).
Cited author occurrences linked to AutiHub author records
82 / 170 (48.2%)
Distinct linked cited authors: 49 / 136 (36.0%)
Linked cited-author occurrences not identified as autistic
66 / 82 (80.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 66 / 170 (38.8%). Distinct linked cited authors not identified as autistic: 43 / 49 (87.8%).
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