Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study
Objectives Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-re...
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| Format: | Article |
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BMJ Publishing Group
2022-02-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/12/2/e056904.full |
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| author | Walter Cullen Laura Carravallah Mary Doherty Stuart Neilson Jane O'Sullivan Mona Johnson Sebastian C K Shaw |
| author_facet | Walter Cullen Laura Carravallah Mary Doherty Stuart Neilson Jane O'Sullivan Mona Johnson Sebastian C K Shaw |
| author_sort | Walter Cullen |
| collection | DOAJ |
| description | Objectives Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences.Design Following consultation with the autistic community at an autistic conference, Autscape, we developed a self-report survey, which we administered online through social media platforms.Setting A 52-item, international, online survey.Participants 507 autistic adults and 157 non-autistic adults.Primary and secondary outcome measures Self-reported barriers to accessing healthcare and associated adverse health outcomes.Results Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included 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. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents.Conclusions Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users. |
| format | Article |
| id | doaj-art-975a1a5ec61d4c96a4c2618bc1bef0d3 |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2022-02-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-975a1a5ec61d4c96a4c2618bc1bef0d32025-08-20T03:11:01ZengBMJ Publishing GroupBMJ Open2044-60552022-02-0112210.1136/bmjopen-2021-056904Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional studyWalter Cullen0Laura Carravallah1Mary Doherty2Stuart Neilson3Jane O'Sullivan4Mona Johnson5Sebastian C K Shaw6School of Medicine, University College Dublin, Dublin, IrelandPediatrics and Human Development, and Medicine, Michigan State University-College of Human Medicine, East Lansing, Michigan, USA9 Department of Anaesthesia, Our Lady`s Hospital, Navan, Meath, IrelandIndependent Researcher, Cork, IrelandDepartment of Anaesthesia, Mater Private Hospital, Dublin, Leinster, IrelandPatient Safety, NHS Digital, Leeds, UKDepartment of Medical Education, Brighton and Sussex Medical School, Brighton, Brighton and Hove, UKObjectives Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences.Design Following consultation with the autistic community at an autistic conference, Autscape, we developed a self-report survey, which we administered online through social media platforms.Setting A 52-item, international, online survey.Participants 507 autistic adults and 157 non-autistic adults.Primary and secondary outcome measures Self-reported barriers to accessing healthcare and associated adverse health outcomes.Results Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included 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. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents.Conclusions Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.https://bmjopen.bmj.com/content/12/2/e056904.full |
| spellingShingle | Walter Cullen Laura Carravallah Mary Doherty Stuart Neilson Jane O'Sullivan Mona Johnson Sebastian C K Shaw Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study BMJ Open |
| title | Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study |
| title_full | Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study |
| title_fullStr | Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study |
| title_full_unstemmed | Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study |
| title_short | Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study |
| title_sort | barriers to healthcare and self reported adverse outcomes for autistic adults a cross sectional study |
| url | https://bmjopen.bmj.com/content/12/2/e056904.full |
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