Improving access to healthcare and research for the autistic community

23 May 2022

Kelly Birtwell is an SPCR post-doctoral fellow at the Centre for Primary Care & Health Services Research, the University of Manchester. Pete Wharmby is an autistic speaker, writer and advocate. Here, they discuss Pete’s recent seminar at the University of Manchester, about making healthcare and research more accessible for autistic individuals.

Accessible healthcare is vital, yet a recent study reported 80% of autistic survey respondents experienced difficulty visiting a GP (Doherty et al., 2022). As part of autism awareness month, we invited Pete Wharmby to speak to us about the myths around autism and the barriers that autistic patients or research participants may face, as well as ways to remove or mitigate them. Since being diagnosed as autistic at the age of 34 Pete has worked to improve autistic awareness, acceptance and to make the world a more suitable place for the neurodivergent community. As the NIHR “Be part of research” campaign is underway, Pete highlights some of the myths about autism and shares his tips for making healthcare and research more accessible and inclusive.

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What is autism and what are some of the common myths?

Autism is a very varied existence, with each autistic person presenting differently. Despite this, there are four areas of common ground that all autistic people will have experienced to a greater or lesser degree:

Communication: autistic and non-autistic people communicate differently, like an apple and a windows computer. There are different styles of communication that sometimes clash and compromise on both sides could help. Autistic people tend to be the ones to shoulder the burden of the ‘translation’ – we call it ‘masking’ – and it would be very beneficial for non-autistic people to join in and do their bit too! For example, autistic people use and appreciate clear, complete and straightforward language, particularly with regard to task completion, so make sure you avoid all ambiguity when giving instructions or guidance. Non-autistic people seem to be quite comfortable around inference and implication, but autistic people approach these with caution, as we never seem to be able to interpret them the right way.

Sensory sensitivities: it can often feel like our senses have the dial turned right up so everything can feel a bit much and cause discomfort or distress. E.g. lights, colours, sounds, temperature, smell, the feeling of clothing/fabric against the skin. The physical discomfort that can be caused by this cannot be understated, even if it is difficult to imagine for non-autistic people. It may lie at the heart of why your autistic family member, colleague or friend struggles with certain clothing, or has a strong aversion to certain foods. The opposite can also occur – a kind of hyposensitivity where we may not experience tastes, smells etc as strongly as non-autistic people. This varies from person to person, and even moment to moment.

Executive dysfunction: autistic people may experience more challenges with executive function than non-autistic people. Prioritising, decision-making, working out what to do next can be difficult. This can be the most challenging aspect of the four highlighted here, and is certainly the most disabling aspect of autism for myself personally.

Monotropism: this involves having a very narrow focus, for example having special interests, which can be a really enjoyable aspect of being autistic. However, our attention can be so fixated on a single thing, that having someone or something ask for us to change focus can be extremely difficult to manage. It is like being ripped from something we are fully immersed in, and being forced into a new, scary, cold place.

All of these four ‘parts’ of autism will feature in an autistic person to some degree. This is truly what we mean by a ‘spectrum’ – not a linear one like a rainbow, but a three-dimensional range of traits that can be very different to the next autistic person. Imagine a mixing desk in a music studio, where every dial and slider is a different aspect of being autistic: all autistic people have the same mixing desk, but the dials and sliders are all set to different levels!

Common myths:

A common myth is that only young white males are autistic, as in examples from The Curious Incident of the Dog in the Night time or Rain Man. People from any demographic can be autistic, although due to the myths it may be harder for some people to get a diagnosis. People of colour and women can find tremendous difficulty in this, as too many professionals are still so wedded to the simple ‘young white male’ stereotype.

Autistic people don’t understand metaphor, humour and sarcasm. This is not true. For example, there are a number of autistic comedians. There is something about the intersection of a wry, original take on life, and a rich ability to use language, common to many autistic people, that makes becoming a comedian an understandable career choice.

Theory of mind: autistic people don’t understand that everyone has their own rich inner life that may be different to their own. This is not true at all. We may not necessarily understand why you feel the way you do, or even how we feel ourselves, but generally we are very aware that you are an independent being with your own thought processes!

Autistic people don’t have empathy. Some autistic people have very high levels of empathy, including hyper-empathy. This can even be directed at non-human things, like animals or even objects. It is true that we may not act on our empathy, as we can struggle to know how to appropriately display it.

What barriers to healthcare and research might autistic people face?

Interoception can be a challenge. It is very common that autistic people struggle to identify their own feelings, emotions and sensations. This can include feelings of hunger and thirst, or needing the toilet. As a result, this will need to be factored in to research questions.

The environment may not be suitable for autistic people. E.g. is there harsh strip lighting, are there crowds of people in a cramped waiting room? Modern buildings can be great for autistic people, with natural light and excellent air conditioning, but this is not a given. Anything sensory-related could cause us considerable difficulty.

The possibility of meltdowns/shutdowns. This can happen if we feel too many stressors at once – especially sensory ones. Being asked a barrage of questions when we already feel horribly uncomfortable can be too much, as can being made to work with others when we need alone time.

What tips can you share for making healthcare and research more accessible?

Try not to lead an autistic patient about what may be wrong. Instead, try leading them through the body to help them communicate what they are experiencing – this helps to avoid the pitfall of our interoception issues and keeps us focused: being asked to explain our whole bodies at once is overwhelming and impossible.

Can anything in the environment (for healthcare and research) be adjusted? E.g. lighting, temperature, noise/sound. Much of this can be a reasonable quick fix. Also ensure that walls are not plastered in hundreds of colourful posters and notices – many autistic people cannot filter information, so we will find ourselves reading them all against our will, which will draw attention away from what we’re trying to do, and lead us closer to meltdown.

Use clear, straightforward communication, don’t insist on eye contact, provide time for processing information. Offer a range of methods to support communication, e.g. support writing concerns down rather than relying purely on verbal communication – many autistic people are either non-speaking completely, or are selectively non-speaking. Providing for them is a real act of equanimity and would always be appreciated. Even speaking autistic people often communicate more effectively through writing.

Can research be conducted online to avoid the sensory difficulties, and allow candidates to enjoy the comfort of their familiar surroundings? Can reminders/prompts be sent about participation – our executive dysfunction is a real barrier, and kind, patient reminders sent to help us can be a very beneficial accommodation.

Actively encourage autistic people to take part in research via autistic communities on social media platforms. There are many of us online (as written communication can be so much easier than spoken), and many of us will be happy to share or retweet calls for research candidates to our followers/friends.

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Recent research echoes Pete’s points. For example, Malik-Soni et al. (2021) report barriers to healthcare can include social stigma and communication difficulties with staff. The authors recommend programmes to increase the knowledge of healthcare staff about the needs of autistic individuals in order to improve access to healthcare. Improving healthcare access is important because autistic people are more likely to experience a range of medical conditions such as diabetes, hypertension and obesity compared to non-autistic individuals (Croen et al., 2015; Xue Ming et al., 2008; Flygare Wallen et al., 2018). Improving access to research is therefore equally important in order to ensure that autistic people are not excluded from research about the health conditions that affect them. In their study on barriers to healthcare for autistic adults, Doherty et al. (2022) state: “Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.” This applies as much to research as it does to healthcare.

Below you can find the references we have cited as well as a list of links and resources that might be of use. To find out about the experiences and work of doctors and researchers who are autistic, the following twitter accounts might be of interest:

@Autistic_Doc @AutisticDoctor @DoctorsAutistic @autism_north

References:

Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism: the international journal of research and practice, 19(7), 814–823. https://doi.org/10.1177/1362361315577517

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:e056904. doi: 10.1136/bmjopen-2021-056904

Flygare Wallén, E., Ljunggren, G., Carlsson, A. C., Pettersson, D., & Wändell, P. (2018). High prevalence of diabetes mellitus, hypertension and obesity among persons with a recorded diagnosis of intellectual disability or autism spectrum disorder. Journal of intellectual disability research: JIDR, 62(4), 269–280. https://doi.org/10.1111/jir.12462

Malik-Soni, N., Shaker, A., Luck, H., Mullin, A.E., Wiley, R.E., Lewis, M.E.S., Fuentes, J. & Frazier, T.W. (2021). Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric Research, https://doi.org/10.1038/s41390-021-01465-y

Xue Ming, Brimacombe, M., Chaaban, J., Zimmerman-Bier, B., & Wagner, G. C. (2008). Autism spectrum disorders: concurrent clinical disorders. Journal of child neurology, 23(1), 6–13. https://doi.org/10.1177/0883073807307102

Useful links and resources:

https://petewharmby.com/petes-blog/

https://autisticdoctorsinternational.com

https://www.theneurodiverseuniverse.com/

https://www.neurodiversityweek.com/student-resources

https://www.neurodiversityweek.com/university-resources

https://www.neurodiversityweek.com/parent-resources

https://autisticgirlsnetwork.org/

https://www.womenbeyondthebox.com

https://sparkleclass.com/blog/

https://neuroclastic.com/show-us-your-brain-free-resource-for-understanding-your-brain-story/

https://care-trade.org/congratulations-jobe-celebrating-10-years-in-her-job-at-guys-and-st-thomas-hospital/