Luella Wheeler (she/they/ia) – BSc, GradDipBus, PGDipSci 

Kāi Tahu, Kāti Māmoe, Waitaha, and Pākehā, tangata whaitakiwātanga and tangata whaikaha, a late-diagnosed Autistic person. I am passionate about representation, validation, and liberation of Autistic lives, promoting neurodiversity-affirming perspectives, and acknowledging and nurturing the mana of the Autistic community. 

In 2017 for Human Rights Day, the World Health Organisation Director-General wrote “The right to health for all people means that everyone should have access to the health services they need, when and where they need them.”  Healthcare access is essential to living a good life.  Autistic people can have unique healthcare needs because of the frequency of co-occurring health conditions (Al-Beltagi, 2021; Davies et al., 2023; Donaghy et al, 2023).   Unfortunately, it is very common for Autistic people to experience significant barriers when accessing healthcare and to have adverse outcomes as a result. 

This has been demonstrated by research, some of which this article will discuss.  It is something I’ve experienced personally, and from many conversations with other Autistic people I know that sadly I am far from alone.

Recent research into healthcare barriers showcases ways we can improve.

In a study of healthcare barriers conducted by Doherty et al. (2022), common reasons for not accessing healthcare included uncertainty about whether medical attention was required, difficulty making phone calls, not feeling understood by healthcare professionals, difficulties in communication with doctors and difficulty with waiting room environments.  Barriers led to patients missing medical appointments, having untreated medical and mental health conditions and having treatment needs escalate because of delay.  A third of respondents had experienced potentially life-threatening conditions that were untreated.  The authors concluded that ensuring equity would require providers to increase understanding of Autistic experiences, particularly communication and sensory needs (Doherty et al., 2022).  

In 2023 an Autistic research team reported further research on the numerous healthcare barriers Autistic people face (Shaw et al., 2023).  They grouped barriers into themes – early barriers, communication mismatch, doubt in self and doctors, and helplessness and fear.  Among early barriers were Autistic people being unsure of body sensations and having atypical pain thresholds that created uncertainty about whether medical attention was needed.  They found that Autistic people were frequently much sicker than they realised or were representing to doctors, and much sicker than doctors realised.  Other barriers were the inability to make an appointment if phone calls were the only option to do so, lack of predictability around what to expect, and sensory distress during travel to appointments and particularly in waiting rooms.

The second theme Shaw et al. (2023) found was communication mismatch, with Autistic patients having frequent bad experiences interacting with medical receptionists and doctors.  Sometimes Autistic people were perceived as rude, treated poorly, missed unspoken communication cues, and had their pain disbelieved because their face and body did not align with the symptoms and sensations they reported in ways a neurotypical person may expect.  One patient in the study reported: “There was a loose splinter of bone and it was painful but I could not express my pain in a ‘normal’ way so nobody took it seriously.”  Even Autistic people who were healthcare workers themselves still experienced communication mismatches, despite their medical knowledge (Shaw et al., 2023). 

Unsurprisingly, given it was common to have a track record of bad experiences, the other themes Shaw et al. (2023) found were doubt, hopelessness and fear.  Many Autistic people in the study lacked trust in doctors and in their ability to access treatment because of experiences of being misinterpreted, criticised, traumatised, infantilised, doubted, and seen as unreliable witnesses to their own health experiences.  Autistic people may avoid eye contact, engage in stimming movements and communicate in unique ways, which can lead health practitioners to assume the patient is anxious or stressed, with any health issues falsely attributed to psychosomatic experiences.  If Autistic people have found these negative experiences are common, they may calculate there is no value in putting themselves through the sensory discomfort and vulnerability of attending medical treatment if they will not actually receive effective help.  Some participants felt that doctors had nothing to offer and reported experiences of futility and helplessness.  A number of participants expressed fear that their health needs might be dismissed if they shared past mental health experiences or the fact that they are Autistic with health professionals (Shaw et al., 2023).

The result of these negative experiences is a high rate of healthcare avoidance and subsequently significant adverse health outcomes.  Some study participants chose to endure illness rather than go through more negative healthcare experiences.  One participant decided to sit out a heart attack at home and many had delayed emergency treatment to the point it became life-threatening (Shaw et al., 2023).  This is consistent with findings that Autistic people are more likely to need emergency medical treatment and more likely to have adverse outcomes during emergency admission (Vohra et al., 2016).  Shaw et al. (2023) propose there exists a ‘triple empathy problem’, with communication barriers between Autistic and non-Autistic people as well as between medical professionals and patients with less medical knowledge.  This builds on to the ‘double empathy problem’ which describes communication mismatch between Autistic and non-Autistic people (Milton, 2012). 

Consider how you can apply the SPACE framework.

A key barrier that Shaw et al. identify is a need for empathetic understanding from healthcare professionals about Autistic needs and communication styles.

SPACE (Sensory, Predictability, Acceptance, Communication and Empathy) is a suggested accessibility framework for health professionals to meet the needs of Autistic people (Doherty et al., 2023).  Sensory accessibility means professionals having awareness of the sensory experiences of Autistic patients and the things that may be sources of discomfort and distress, as well as awareness that sensory stress is cumulative and may lead to overwhelm.  Predictability for Autistic patients means giving as much information as possible ahead of time, including information about the physical environment, and being very clear and prompt in notifying about changes to what is expected, as well as minimising any changes to plans.  Acceptance incorporates a neurodiversity-affirming approach with greater understanding of stimming, monotropic focus, distressed behaviours, and an understanding of Autistic people beyond stigma and stereotype.  Communication involves acknowledgement of the variety of communication needs Autistic people have and a willingness to accommodate these. Healthcare professionals should be clear, literal and unambiguous.  It is also important that there is clear safety-netting, with information and guidance provided about what steps to take if medical conditions change, if there is failure to improve or if there are other health concerns.  Empathy encompasses an acknowledgement that communication mismatch creates misunderstanding on both sides and an awareness that communication training for healthcare workers is highly neuronormative and can lead to misinterpretation of Autistic ways of presenting.  It also acknowledges that Autistic people often express empathy in their own ways and they may experience hyper-empathy, which can mean that being in healthcare settings with other unwell people is an emotional onslaught that creates distress (Doherty et al., 2023).

Recent research here in Aotearoa New Zealand has revealed significantly higher mortality rates for Autistic children and young people and concludes that more effort is needed to support Autistic health needs (Vu et al., 2024).  This research showed a higher mortality risk for females compared to males, as well as higher risk when there is co-occurring intellectual disability.  There are a number of conditions that may contribute to mortality risk that co-occur at higher rates among Autistic people compared to the general population, including epilepsy, depression, anxiety, and ADHD, and there are increased risks for Autistic young people of injury and harm from others (Vu et al., 2024).

It is not easy to face what the research is revealing, but there is significant opportunity to make healthcare more accessible, less distressing, safer and more effective for Autistic people.  In my own life, many of my past healthcare experiences have been poor, but they have improved greatly as I have learned just how much I need to advocate for my unique experiences and needs.  For times that I am less able to, and for other Autistic people who can’t exercise those skills, having support people ready to go in to bat for us can make a big difference to our outcomes.  Safe, accepting, knowledgeable, and empathetic healthcare can go a long way to improving Autistic wellbeing. 

References

Al-Beltagi, M. (2021). Autism medical comorbidities. World Journal of Clinical Pediatrics, 10(3), 15-28. https://doi.org/10.5409/wjcp.v10.i3.15 

Davies, C., Moosa, M., McKenna, K., Mittal, J., Memis, I., Mittal, R., & Eshraghi, A.A. (2023). Quality of life, neurosensory disorders and co-occurring medical conditions in individuals on the spectrum, with a special focus on females diagnosed with autism: A systematic review. Journal of Clinical Medicine, 12(3). https://doi.org/10.3390/jcm12030927 

Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S.C.K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: A cross-sectional study. BMJ Open, 12(2). https://doi.org/10.1136/bmjopen-2021-056904 

Doherty, M., McCowan, S., & Shaw, S. (2023). Autistic SPACE: A novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital Medicine, 84(4). https://doi.org/10.12968/hmed.2023.0006 

Donaghy, B., Moore, D., & Green, J. (2023). Co-occurring physical health challenges in neurodivergent children and young people: A topical review and recommendation. Child Care in Practice, 29(1), 3-21. https://doi.org/10.1080/13575279.2022.2149471 

Ghebreyesus, T. A. (2017). Health is a fundamental human right. World Health Organisation. https://www.who.int/news-room/commentaries/detail/health-is-a-fundamental-human-right 

Milton, D.E.M. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883-887. https://doi.org/10.1080/09687599.2012.710008 
Shaw, S. C., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2023). Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 0(0). https://doi.org/10.1177/13623613231205629 

Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016). Emergency department use among adults with Autism Spectrum Disorders (ASD). Journal of Autism and Developmental Disorders, 46, 1441–1454. https://doi.org/10.1007/s10803-015-2692-2 

Vu, H., Bowden, N., Gibb, S., Audas, R., Dacombe, J., McLay, L., Sporle, A., Stace, H., Taylor, B., Thabrew, H., Theodore, R., Tupou, J., & Schluter, P. J. (2024). Mortality risk among Autistic children and young people: A nationwide birth cohort study. Autism, 0(0). https://doi.org/10.1177/13623613231224015