Authors: Joyce Kam, Liz Herrieven / Editor: Liz Herrieven / Codes: MHP2, SLO1, SLO5, SLO7 / Published: 31/10/2023
You are one of the doctors working in the Emergency Department (ED) tonight. You have been waiting to be allocated to work in Resus and tonight’s the night. The tannoy went off a couple of minutes into your shift. ’Adult priority call in 5 minutes, adult priority call in 5 minutes’. One of the nurses hands you the ATMIST sheet.
A 30-year-old male with a nosebleed. Their vitals seem relatively ok: RR 20, sats 99%, HR 100, BP 90/60. There’s no more information. You wonder how bad this could be and why the pre-alert, but you’re also secretly excited about your first Resus patient in this rotation.
The paramedics arrive with a gentleman whose clothing is soaked in blood. He is autistic and has a rare bleeding disorder.
He appears agitated and is making sounds you don’t understand. He’s not obeying commands and keeps trying to get off the stretcher. The paramedics tell you he pulled both cannulas out on the way in. He wouldn’t allow them to apply pressure to his nose. He is still bleeding and is spitting out large blood clots onto the floor.
What do you do?
This blog will not go into details of the management of epistaxis but will instead explore the topic of caring for an autistic patient in ED.
What is Autism Spectrum Condition (ASC)?
The term Autism Spectrum Condition refers to a group of neurodevelopmental disorders which affect how the brain develops and works1. People with the diagnosis of ASC can have varying presentations and each face their own challenges and have their own strengths. You’ll notice the word “condition” rather than “disorder”: autistic people are, rightly, keen to point out they don’t have a disease and there is nothing “wrong” with them – their brains just work a little differently. Another term, which has come into use more recently, is neurodivergence. A person might describe themselves as being neurodivergent if they are autistic, and the human race itself is neurodiverse.
You also might have noticed the use of identity-first language rather than person-first language. We’re taught in healthcare to avoid talking about “the asthmatic in cubicle 1” or “the stroke in resus”. Instead we must see our patients as people first, with diagnoses second – “the girl with asthma”. This is person-first language. The majority of autistic people use identity-first language and describe themselves as autistic, rather than a person with autism. They reason that their neurodivergent brain is part of them and cannot be separated from their identity. They would be a different person if they were not autistic, whereas the girl with asthma would still be herself, even without the asthma2.
Some autistic people may find aspects of communication challenging3. This may be both non-verbal communication, verbal, or both. Some may have good language skills but struggle to use their speech in social settings. Some may find it difficult to interpret metaphors (“it’s raining cats and dogs”) or the behaviour of others.
Sensory processing issues are a common challenge for autistic people. Hyper- or hypo-sensitivity might be an issue. Loud noises (alarms, buzzers, shouting, crying – all common in the ED), bright lights and unfamiliar textures or touch (sats probes, BP cuffs, abdominal examination, stethoscopes, cannulation…) may all be distressing or even physically painful. The video below (although not set in a healthcare environment) provides more information. Turn it up loud!
Autistic people may display repetitive hand (or other) movements. This is known as “stimming”. Stimming can help autistic people to stay calm and to regulate their emotions, particularly in stressful situations (such as being unwell or attending the ED). Routine and structure can also help with this – an ED visit has neither of these and can be very unpredictable and scary, not just for autistic people! Stress, fear and emotional dysregulation can lead to a meltdown. Meltdowns can vary dramatically, depending on the situation and on the person. They may be loud and violent, or they may be quiet and still, with a shutdown of communication. They are not “tantrums”. The person is not choosing to behave badly or to be antisocial. Trying to convince someone having a meltdown to “calm down” will not help. Providing the environment and support to enable them to regulate their emotions might do.
All autistic people are different – just like all neurotypical people are different. The autistic spectrum is often misunderstood – it is not a spectrum of being more or less autistic. The spectrum is more three-dimensional, with each person having their own strengths and challenges, whether they be related to communication, sensory processing, restricted or repetitive movements, or social interactions.
ASC is not a learning disability, although many people who have a learning disability are also autistic, and vice versa4.
Barriers to caring for patients with ASC in the Emergency Department
The sensory stimulation and unpredictability of the ED cause huge barriers to accessing health care for autistic patients. Communication difficulties present another barrier – this may be partly related to difficulties in expressing pain or discomfort, or navigating the social interactions involved in healthcare, but also a lack of awareness on the part of healthcare professionals regarding communication. Some autistic people may not be comfortable with eye contact, or may not give the “usual” non-verbal cues that go along with verbal expressions of pain. This can lead to being misunderstood and pain, or other symptoms, may be dismissed.
Lack of awareness around ASC amongst ED staff is another cause of health inequalities5. Among the nursing profession, lack of training and preparation in nursing school has been noted as a challenge to providing a high standard care to autistic patients. A small survey conducted in 2018 in the UK showed that 84% of ED staff had no specific training in caring for autistic people and 76% felt that additional teaching may be beneficial6. Adequate, appropriate and specific training is the first step in helping ED staff to recognise the individual needs of neurodivergent patients and tailoring care to them.
In 2022, Mary Doherty (@AutisticDoctor) and team found there were increased rates of mortality for all illnesses suffered by autistic patients compared to neurotypical patients7. 32% of autistic adults did not seek help for potentially serious symptoms. Reasons for this included a fear of not being believed and prior poor experiences of healthcare. There were increased rates of suicide and mental illness, and autistic patients admitted to hospital via the ED were more than twice as likely to die during their inpatient stay compared to neurotypical patients. Possible reasons for this include a later presentation and delays in diagnosis. Diagnostic overshadowing is important. This occurs when clinicians attribute presenting symptoms to a pre-existing diagnosis (in this case, ASC) rather than looking for alternative causes. Consider our distressed patient with epistaxis – it would be easy to attribute his distress purely to neurodivergence, rather than considering whether or not he may be in haemorrhagic shock.
What can we do?
- See your patient as an individual
If you’ve met one autistic person, you’ve met… one autistic person. Don’t make assumptions or generalizations. Find our what challenges your patient faces and support them as best you can. Remember there may be relative strengths and challenges in communication, social interaction, and sensory processing. Listen, respond and emphathise.
2. Read the Hospital Passport
The hospital passport (or equivalent) is a document designed to help autistic patients, or those with a learning disability, to communicate with healthcare professionals when they are unable to do so in other ways8. There are many different versions available and your local Trust will probably have their own. It contains information such as past medical history and medication, but also much more important and less easily discovered information such as how the person might show you they are in pain, how best to communicate with them, what kind of things might cause them distress and how you can make them feel more safe and secure. Two minutes spent reading this document can save you a lot of time and energy and make your clinical assessment not only easier (for both yourself and the patient) but also more accurate9.
3. Consider the environment
The ED can be an overwhelming experience for autistic patients. If possible, try to identify what specifically is causing distress and address it directly. If possible, providing a quieter area to wait can make a huge difference. Perhaps your department could loan out ear defenders? Lighting can be an issue – some people might need good lighting, others might prefer a darker room. It’s tempting to provide lots of bright sensory lights (disco lights, projectors, bubble tubes) but whilst these may be calming and distracting for some people, they can cause sensory overload for others. Find out what your patient needs.
4. Recognise and allow stimming
It can be tempting to try to stop someone stimming, but this action is keeping them focused and in control. Recognise it for what it is, and allow it to continue. Stimming encompasses a huge range of repetitive actions, sometimes also involving things like fidget toys or pieces of clothing. Could your department provide fidget toys to help?
Remember communication is a two-way thing. Aim to try to understand your patient and make yourself understood. Avoid jargon. Be aware of non-verbal cues (both yours and those of your patient). If your patient is non-verbal, find out how best to communicate with them. Would pictures, symbols, gesture or Makaton signing help? Could you put together a stash of resources to use when needed? The Makaton website is free to sign up and has free downloadable healthcare resources11. There are more great resources listed on the National Autism Society website12 and there are also some useful blogs from Don’t Forget The Bubbles13, 14.
6. Provide structure
Structure can make things easier to bear. Let patients know what they are waiting for and, if possible, give timescales. For some, a “Now and Next” board can help – words, symbols or pictures to remind them what is going to happen.
7. Be familiar with the legal framework around capacity and consent and reasonable adjustments
It is important to familiarise yourself with the concepts of capacity and consent before you assess your patient. Just as a reminder, capacity is specific to a particular scenario. For example, someone may have the capacity to consent to having their blood pressure taken, but not to having a major surgery. Healthcare professionals have a duty to help their patient understand and make their own decisions. Your autistic patient may not have a learning disability, but may need help to tolerate the sensory overwhelm in the ED so they can make the right decision for themselves. You may need to consider communication and ensure accessible information standards are met (particularly if your patient does have a learning disability along with being autistic, or if they have particular communication challenges).
This Best Practice Guideline published by the RCEM is a useful guide to remind ourselves the principles surrounding consent and capacity.
Reasonable adjustments are required by law (Equality Act 2010). This means you have a legal duty to make reasonable adjustments to ensure all patients, regardless of whether they are autistic or have other needs, can access healthcare.
Mary Doherty and team, after identifying barriers to healthcare, also suggested a framework for supporting autistic patients15. The Autistic SPACE reminds us to consider Sensory needs and challenges, Predictability, Acceptance, Communication and Empathy.
8. Multidisciplinary awareness and training
As mentioned earlier, there is a lack of specific training about autism for ED staff (and all healthcare staff in general). Raising awareness of the barriers that exist to healthcare and some of the ways to help overcome them is a great start. Training with the multidisciplinary team including therapists, psychologists and social care workers could provide ED staff with a better understanding of the challenges faced by autistic patients and strategies to mitigate distress. Training involving caregivers and patients may also be useful. We can learn how to better look after autistic patients in a healthcare setting and also grow a deeper appreciation of the day-to-day challenges they face in the community.
I hope you now have a greater understanding of what Autism Spectrum Condition is and the challenges that patients face in the emergency setting. Hopefully you’ve gathered a few more tips and tricks up your sleeves for clinical assessment and management. If we all consider the barriers to healthcare for autistic patients, we can start to reduce some of the health inequalities and provide our patients with a better experience and outcome.
- Autism and Autism Spectrum Disorder (ASD) – for parents and carers| Royal College of Psychiatrists, 2020. Reviewed in 2023. [Accessed 2023 Oct 5].
- Brown L. Identity-First Language. Autistic Self Advocacy Network (ASAN).
- Collier JAB, Longmore JM, Amarakone K. Oxford handbook of clinical specialties. Oxford: Oxford University Press; 2014.
- Liz Herrieven. Defining Learning Disability, Don’t Forget the Bubbles, 2021.
- Brasher S, Middour-Oxler B, Chambers R, Calamaro C. Caring for Adults With Autism Spectrum Disorder in the Emergency Department: Lessons Learned From Pediatric Emergency Colleagues. J Emerg Nurs. Volume 47, Issue 3, 2021, Pages 384-389, ISSN 0099-1767.
- Taylor K, Cadman E, Burkitt S, Langseth A. G338(P) Improving the emergency department experience for children with autism, and their families. Archives of Disease in Childhood [Internet]. 2018 Mar 1;103(Suppl 1):A137–7.
- Doherty M, Neilson S, O’Sullivan J, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open 2022 Feb 22;12(2):e056904.
- National Autistic Society. My health passport [Internet]. www.autism.org.uk. 2020.
- Liz Herrieven, Erica Donovan and Tara McCormack . Hospital Passports, Don’t Forget the Bubbles, 2021.
- Autism Sensory Packs – Caudwell Children [Internet]. 2022 [Accessed 2023 Oct 5].
- Makaton – communication aid.
- National Autism Society: Useful resources – Visual supports.
- Julia Richmond, Vikram Baicher. Communicating with neurodivergent patients, Don’t Forget the Bubbles, 2022.
- Vicki Marchant. Emergency ambulance transport in those with Autistic Spectrum Condition, Don’t Forget the Bubbles, 2021.
- Doherty M, McCowan S, Shaw S. Autistic SPACE: a novel framework for meeting the needs of autistic people in healthcare settings. British Journal of Hospital Medicine Vol.84, No.4 Doi.org/10.12968/hmed.2023.0006.
- Herrievan E. Learning Disabilities in the ED. RCEMLearning, 2018.