Exploring barriers to accessing healthcare for autistic adults

Autism is a lifelong developmental disability which affects how people communicate and interact with the world (National Autistic Society, n.d.). Having autism is also associated with adverse health outcomes (Doherty et al., 2022), with the UK government finding a 16-year mean life expectancy reduction in autistic people (HM Government, 2021). A suggested reason for these adverse outcomes is barriers to healthcare for autistic people. Doherty et al. (2022) found that a third of autistic people reported not seeking medical treatment for a potentially life-threatening condition.

Shaw et al. (2023) were interested in exploring the experiences of healthcare barriers and adverse outcomes for autistic adults, using a qualitative approach and thematic analysis. Data from the same sample has previously been used in a quantitative study (Doherty et al., 2022). They found evidence of healthcare inequality for autistic people and concluded that healthcare providers needed to understand autistic perspectives, needs and sensitivities. Shaw and colleagues investigated the qualitative accounts in an attempt to discover the reasons for these barriers.

Methods

Participants were recruited through convenience sampling to complete an online survey. Social media and autistic charity websites were used to advertise the survey. Participants were autistic adults, with either a formal or self-diagnosis. The researchers used an online survey rather than an in-person interview. This saved time and increased the accessibility of the study for autistic people. Data was analysed using reflexive thematic analysis.

The use of the subjective interpretations of the researchers aided the thematic analysis. Members of the research team were autistic adults, who have experienced the barriers expressed by the participants. The research team intentionally used their experiences to produce a chronological model of the themes uncovered by the survey.

Results

The whole sample consisted of 1,248 autistic adults, the largest proportion of whom lived in the UK (n = 571). Participants were primarily female (n = 806), with 213 identifying as male, and 223 identifying as non-binary. All participants did not answer every question.

The analysis generated five main themes:

Theme 1: Early barriers

• These barriers were experienced early in the process of accessing healthcare, such as issues identifying whether medical attention was needed, challenges in contacting healthcare services, and struggles with attending appointments.

I have an unusually high tolerance for pain, so I am often much sicker than I realise.

Theme 2: Communication mismatch

• Respondents reported differences in communication with healthcare staff and receptionists. They felt the need to mask and struggled to understand how to access an appointment.

I was once told to sit tight for a referral letter and said where do you want me to sit… I felt ashamed like I had appeared demanding.

Theme 3: Doubt – in oneself and doctors

• Sense of self-doubt and pre-empted guilt when considering accessing healthcare. These worries could be overcome by a positive relationship with the doctor, but respondents more often experienced negative relationships. This led to frustration and feelings that they were not being believed.

 I feel I am a nuisance.

Theme 4: Helplessness and fear

• Reaching out for help and not receiving it left respondents despondent, and in some cases caused a fear of repercussions.

I’m afraid if the GP finds out I’m autistic she’ll decide I’m a bad parent.

Theme 5: Healthcare avoidance and adverse health outcomes

• Prior negative experiences dissuaded respondents from future contact with healthcare. More broadly, respondents experienced serious and potentially life-threatening medical outcomes.

It’s unlikely I will ever return to A&E unless I’m unconscious and someone else takes me against my will.

Shaw and colleagues also discovered an overarching meta-theme, “epistemic injustice”, which linked the other themes together. The authors report that “respondents felt reduced to a single-dimensional label of autism”, resulting in their experiences subconsciously undermined by doctors’ pre-existing assumptions.

Explanatory model

Based on the generated themes, Shaw et al. (2023) developed an explanatory model to outline how these lived experiences may translate into barriers. They suggest that:

• Autistic people rely on predictability and routine, but seeking healthcare proves to be an unpredictable social task, with considerable overstimulation.
• Previous evidence indicates that autistic people have interoceptive differences (Shaw et al., 2022), meaning they may interpret bodily sensations differently than neurotypical individuals, for example, pain awareness.
• These differences and the overwhelming environment of healthcare settings, can lead to communication mismatch between autistic people and doctors. Respondents reported masking to try and reduce this. Masking is associated with poor mental health outcomes in autistic people (Mandy, 2019) and isn’t something all autistic people can do.
• Autistic people are attempting to access scarce healthcare resources while competing with non-autistic people who have an advantage.
• Repeated negative experiences with doctors lead to a feeling of not being taken seriously. This leads to feelings of helplessness over time, resulting in healthcare avoidance. Avoiding healthcare can have potentially life-threatening consequences.

Conclusions

Barriers to healthcare access, like mismatched communication and sensory overload, may lead to adverse healthcare outcomes for autistic people. Identified adverse outcomes were, in many cases, medically serious, highlighting the importance of tackling these barriers.

A triple empathy problem

Milton (2012) described a double empathy problem in the context of autism, highlighting the two-way barrier of autistic people struggling to communicate with neurotypical people, and neurotypical people having difficulty communicating with autistic people. However, Shaw and colleagues felt that this phenomenon was not representative of what they witnessed in their data.

Instead, they discuss the triple empathy problem, which incorporates bi-directional communication difficulties between doctors and patients (Hinchey and Jackson, 2011) that likely stem from the fact that medicine has its own culture, language and practices which are alien to the general population. Given that autistic people may already struggle at communicating with neurotypical people, the additional layer of attempting to communicate with doctors (who are also often neurotypical) creates an additional barrier: hence, the triple empathy problem.

Strengths and limitations

Strengths

One interesting quality of Shaw and colleagues’ approach was the purposeful injection of subjectivity. As members of the research team are autistic adults, they used their own experiences of accessing healthcare to guide their explanatory model. These insider insights aided the study’s design by choosing to use an online survey approach. This was deemed to be more accessible for autistic participants. This method resulted in a huge sample size, allowing for greater generalisability and for trends to be identified and reported on a larger scale.

Limitations

However, there are also several limitations, the first being related to the aforementioned strength:

• The use of an online survey, and the resulting large sample size, may have led to the loss of the individual voices. Had an interview approach been taken, the sample would have been smaller, and further probing questions could have been asked to ascertain themes that may not have been considered using the survey approach.
• Healthcare outcomes were self-reported. This means it is possible that some of the accounts of adverse health outcomes are not accurate, especially if the respondent was not assessed by a medical practitioner. This is not to say that the respondents were lying but to argue that we cannot determine whether the severity of outcomes was accurate.
• The majority of the respondents are female. This therefore means that the findings are more generalisable to the experiences of autistic females than to those of autistic males. There are differences in the presentation of autism in males and females (Rubenstein et al., 2015), especially relating to the prevalence of masking behaviours (Zener, 2019).

Implications for practice

Shaw et al. (2023) recommend a memorable framework for clinicians to meet the needs of autistic people. Autistic SPACE was developed by Doherty and colleagues (2023), and involved the following:

• S – sensory:
  • Autistic people can be hypo- or hyper-sensitive to sights, smells, sounds, tastes, textures, etc.
  • Consider using non-fluorescent lighting and having a low level of noise. Textures of surfaces and temperature of locations should also be taken into account.
  • Proprioceptive (the body’s ability to sense movement, action and location) and interoceptive (identification of physical and emotional internal states) differences also need to be considered.
• P – predictability:
  • Providing the maximum possible information in advance about the physical environment, processes and staff is likely to reduce anxiety.
• A – acceptance:
  • Recognise neurodevelopment differences, make appropriate accommodations, and understand so-called “challenging” behaviours.
• C – communication:
  • Autistic people may communicate differently. Many use augmentative and alternative communication methods, which should be facilitated.
  • Many autistic people have difficulty using telephones, so a flexible approach to booking appointments would be desirable.
• E – empathy:
  • Recognise challenges that autistic people face with theory of mind (capacity to understand what other people might be thinking), and make an effort to consider their perspective.
  • Check comprehension of any information shared verbally, and ensure that both parties are on the same page.

Statement of interests

HW works in a school for autistic children and has autistic family members. She is not involved in any research groups investigating autism or healthcare barriers.

Links

Primary paper

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.

Other references

Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open, 12(2), e056904.

Doherty, M., McCowan, S., & Shaw, S. C. K. (2023). Autistic  SPACE: A novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital  Medicine, 84(4), 1–9.

Hinchey, S. A., & Jackson, J. L. (2011). A cohort study assess ing difficult patient encounters in a walk-in primary care  clinic, predictors and outcomes. Journal of General Internal  Medicine, 26(6), 588–594.

HM Government. (2021). The national strategy for autistic children, young people and adults: 2021 to 2026. 

Mandy, W. (2019). Social camouflaging in autism: Is it time to lose the mask? Autism, 23(8), 1879–1881.

Milton, D. E. M. (2012). On the ontological status of autism:  The ‘double empathy problem’. Disability & Society, 27(6),  883–887.

Rubenstein, E., Wiggins, L. D., & Lee, L. C. (2015). A review of the differences in developmental, psychiatric, and medical endophenotypes between males and females with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 27, 119-139.

Shaw, S. C. K., Davis, L. J., & Doherty, M. (2022). Considering autistic patients in the era of telemedicine: The need for an adaptable, equitable, and compassionate approach. British  Journal of General Practice Open, 6(1).

What is autism? (n.d.). National Autistic Society. Retrieved 4 February 2024, from https://www.autism.org.uk/advice-and-guidance/what-is-autism

Zener, D. (2019). Journey to diagnosis for women with autism. Advances in Autism, 5(1), 2-13.

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