Looking after children, we are used to adapting our approach to the person in front of us. This comes through time, experience and learning from others including colleagues, patients and parents or carers. Then we may take for granted the knowledge and ‘know how’ and may struggle to communicate to junior colleagues our experiences. As with a lot of procedures confidence and patience is key.
I met Julia during her special study module in her 4th year of medical school. She chose to come and spend time in the Children’s Emergency Department where I work. As part of the placement, she undertook a project to help healthcare professionals improve their communication when performing procedures on children and young people with autism or learning difficulties. This project was borne from personal experience.
Whilst this post and accompanying infographic are aimed at those who look after children and young people with ASC and/or learning disabilities, a lot of it can be applied to many of our patients. We use this resource in our department as a STOP moment before undertaking procedures. Proper preparation prevents poor performance, but we also have a duty to not cause unnecessary distress for our patients and their loved ones.
Enough from me, now to Julia….
During my placement in paediatrics, I was watching a junior doctor as they attempted to cannulate a child with autism. The topical anaesthetic was taking taken effect. The doctor applied it earlier after they had had an unsuccessful attempt without it. They pleaded with the child to stay still, reminding them that it shouldn’t hurt. But the child didn’t believe them and kept pulling their hand back.
I knew the child wasn’t in pain but, because he was autistic, he was experiencing sensory overload. Anxious to appear critical of my mentor for the day, I stepped out of the shadows. “It shouldn’t be hurting you, are you struggling to stay still because it feels strange?” I asked. The child looked surprised and nodded yes.
Looking around the ward, I could see walls full of bright paintings of animals, fish, and children’s characters. You could hear children chatting, watching television, and playing. A tight tourniquet squeezed his arm whilst we prodded and poked his hand. The bright colours and the foreign sensations, combined with the smell of hospital breakfast, attacked his senses.
Children and young people with autism can find it difficult to process sensory information. The more sources of information, the more likely they are to become overloaded and overwhelmed. By reducing these inputs, we can reduce the stress that the child experiences.
I suggested he could wear his headphones to muffle the noise and he replied ‘Yes’, breathing a sigh of relief.
I asked him if he would like us to hold his arm gently or firmly and he replied, ‘Firmly’.
I asked if he wanted to shut his eyes or watch, and he said, ‘Shut them tight’.
He stayed still and the cannula went in. Now could finally collect blood and give him the medication he needed. He was showered with praise and loved his big sticker. We felt a massive sense of achievement. Some simple things enabled us to help this young person. The seemingly impossible task became quick and easy.
I’m confident in caring for neurodivergent patients because of my younger sister, a cheeky person with autism and a learning disability. She has a complicated medical history and has made many trips to hospital, often with me in tow. She is unable to talk but uses British Sign Language and has a transparently expressive face. I know her better than most, and I care about her more than anything. I’m sure she is the reason I chose to study medicine and become a doctor.
My family dreaded trips to the hospital, like any other family, but ours was a different kind of fear. We were afraid that the quality of care would not be good enough. This fear was not unfounded. Although we had many positive experiences, far too many were, frankly, traumatic. Sadly, people with learning disabilities face healthcare inequality daily. It’s estimated that up to 1200 people with learning disabilities in the UK die avoidably every year due to poor quality healthcare. Furthermore, 80% of families of young children with learning disabilities felt that staff did not take reasonable care to make sure that their child had a positive experience in hospital.
Contrary to the stereotypical view of autism, she is very physically affectionate.
Like many siblings of a young person with a learning disability, I have a close relationship with my sister and have developed a wide range of skills that enable me to take care of her. We have also developed many strategies to empower and enable my sister to access appropriate care.
When I began medical school, I assumed there would be hours of teaching on how to approach patients with learning disabilities but any teaching we had was limited and lacked practical advice. During my 4th year, I carried out a study module within the Pediatric Emergency Department at the Queens Medical Centre, Nottingham. Part of this included creating a learning resource for the department on a subject of my choice. Because of my earlier experiences, it occurred to me that if I could pass on some of my knowledge, I could empower clinicians to communicate better with neurodivergent patients. Using my experience and a variety of resources, I came up with an acronym, STEP IT UP, to make it easier to remember and implement some practical advice.
There is no one size fits all solution, however, I hope these strategies make clinicians feel more confident when caring for neurodivergent patients.
Simple direct questions
It’s easier for a patient with a learning disability to understand and answer your questions if you keep them simple.
Ask one question at a time.
Use simple terms and avoid medical jargon.
Listen to the patient and try to use their language or terms their carers have used e.g. feeling poorly, tummy ache.
The patient may be familiar with a Picture Exchange Communication system; consider keeping some in your department. You can show these to the patient when asking a question, allowing them to point at their response. Many printable resources are available for free, such as this one from The Autism Program of Illinois.
Take your time
It can take longer for patients with learning disabilities to process what you’ve said and consider their answers. Slow down the pace of your interaction.
Wait patiently for an answer, don’t be afraid of awkward silences.
Allow at least an extra 10 minutes for appointments with patients with learning disabilities.
Despite the understandable pressures to do the most for the most in our limited time, we are legally required to make reasonable adjustments such as allowing more time, to meet the needs of these patients.
Explain to enable compliance
Provide a simple explanation of the steps of a task and how it can benefit the patient.
It may take a little longer, due to their learning disability, and you may have to explain it more than once, but understanding enables consent.
Don’t assume these patients won’t understand or comply.
Demonstrate a procedure on a colleague if possible.
Show the patient any equipment you are going to use and incorporate it into your explanation.
Provide easy read documents to explain procedures if possible. Consider having some laminated hard copies available in your department that explain some of the procedures you commonly perform. Lots of free resources are available online including explanations of procedures and how to make your own easy read documents.
Precise language
Children, including those with learning disabilities such as autism, may interpret things literally.
Consider your language and avoid using metaphors, euphemisms, or colloquial language. Some everyday examples include: “You’ll laugh your head off“, “He’s gone to a better place“, “We’re heading to the theatre now“.
Misunderstanding leads to distress and distrust. If you tell a patient, “This won’t hurt” and they experience a degree of pain or discomfort, however small it may seem, they may believe something has gone wrong or you have lied to them.
Use precise descriptive language when explaining, for example, “You may feel a sharp scratch when the needle touches your skin, it may hurt a little bit, but then it will stop hurting.”
Include carers
Many carers have developed expertise in understanding their charges and spotting the subtle signs of illness. Listening to their opinion is vital.
Ask the carer how to approach any task and how to make the patient comfortable as possible. This will increase the chance of success.
Ask carers to help you with procedures, if you can, such as putting on a blood pressure cuff, placing the stethoscope bell on their chest or holding a hand.
Explain the procedure to the carers first and ask how it could be adapted to be more acceptable to the patient.
Do they have a hospital passport? This document is designed to be read by hospital staff and provides you with essential information about a person with a learning disability. This may tell you their medical background and help tailor your approach.
Touch and feel first
Autistic patients can feel overwhelmed and distressed by sensations. They can withdraw from even painless sensations.
If it is safe, and appropriate, allow the patient to hold, touch and feel any equipment before you use it on them.
Warning a patient that they might experience certain sensations can also help them to process them. Use descriptive terms such as wet, hot, cold, prickly, scratch.
Some sensations may be better tolerated than others, if possible, give them options such as, “Would you like me to hold your arm firmly or gently? Shall I remove the dressing slowly or quickly?”
Understand my differences
Autistic patients process sensations differently. They may be more tolerant of pain or have a heightened sensitivity. They may also express their emotions in a different way. Be careful not to rule out a diagnosis in which pain or funny sensations are a key symptom.
Patients with learning disabilities may have more subtle signs of pain such as aggression, withdrawal, confusion, restlessness, changes in sleep pattern and loss of appetite..
Do not assume that a behaviour is due to a learning disability. It could be a sign, or response, to a symptom. You can always ask carers or family members if a behaviour is normal for a patient or something new.
Prepare a low stimulus environment
Autistic patients can become overwhelmed by too many sources of sensory input.
If possible, see your patient in a quiet, plain room, with minimal staff.
Ear defenders, or earplugs, can be used during examinations and procedures to reduce noise.
Some patients with learning disabilities feel calmer when they stimulate themselves. This is commonly referred to as ‘stimming’. This can be for enjoyment, to aid concentration and to modulate sensory input by giving them one sensation to focus on. Sensory or fidget toys can help patients feel calmer. Plastic and silicone toys can be wiped clean to comply with infection control measures.
Make sure staff who can help have been contacted, and are present, if possible. This may include a disability liaison nurse or a sign language interpreter. Many patients are not aware these services exist so remember to mention and offer them for next time. You can also contact the disability liaison nurse for advice and more resources.
Although it can be challenging to care for a neurodivergent patient, it doesn’t excuse healthcare inequality, particularly when simple changes can massively improve outcomes. So next time you meet a neurodivergent patient STEP IT UP.
Further resources
An A-Z of premade easy read healthcare documents
Free printable visual supports for aiding communication in healthcare settings:
- For making easy read documents:
https://www.england.nhs.uk/wp-content/uploads/2018/06/make-it-easy-easy-read.pdf
https://www.easyhealth.org.uk/
Mencap’s Treat Me Well campaign report, essential extra reading
Supporting children with a learning disability in hospital; a resource for hospital professionals
Top 5 tips for managing sensory differences for professionals
If you would like to provide feedback for the STEP IT UP acronym and infographic, please complete a survey available here.
References
Clarke C. Autism Spectrum Disorder and Amplified Pain. Case Rep Psychiatry. 2015;2015:1–4.
Dr Olga Bogdashina. Donate Top 5 autism tips: managing sensory differences [Internet]. 2014 [cited 2022 Feb 8]. Available from: https://www.autism.org.uk/advice-and-guidance/professional-practice/sensory-differences
Emerson E, Glover G, Turner S, Greig R, Hatton C, Baines S, et al. Improving health and lives: The Learning Disabilities Public Health Observatory. Adv Ment Heal Intellect Disabil [Internet]. 2012 Jan [cited 2022 Feb 9];6(1):26–32. Available from: https://www.researchgate.net/publication/235271923_Improving_health_and_lives_The_Learning_Disabilities_Public_Health_Observatory
Great Ormond Street Hospital for Children. Having a Drip (Easy Read) [Internet]. 2020 [cited 2022 Feb 22]. Available from: https://media.gosh.nhs.uk/documents/Having_a_drip_ER0306_FINAL_Apr20.pdf
Goulding L et al. T-WIGN. Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study. Heal Serv Deliv Res [Internet]. 2013 [cited 2022 Feb 24];1(13):1–224. Available from: https://www.ncbi.nlm.nih.gov/books/NBK259498/
Mencap. Children’s Campaign (Early Years) Report. 2020;
Mencap. Treat me well Reasonable adjustments for people with a learning disability in hospital [Internet]. 2018. Available from: https://www.mencap.org.uk/sites/default/files/2018-06/Treat me well top 10 reasonable adjustments.pdf
Mencap. Supporting children with a learning disability in hospital-a resource for hospital professionals [Internet]. 2021 [cited 2022 Feb 10]. Available from: https://www.mencap.org.uk/sites/default/files/2021-01/January – Childrens Resource for professionals – Final version.pdf
Mitchell P, Russell H, Saltmarsh R. Overly Literal Interpretations of Speech in Autism: Understanding That Messages Arise from Minds. J Child Psychol Psychiatry [Internet]. 1997 Sep 1 [cited 2022 Feb 24];38(6):685–91. Available from: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1469-7610.1997.tb01695.x
National Autistic Society. Sensory differences – a guide for all audiences [Internet]. 2022. Available from: https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences
National Autistic Society. Stimming – a guide for all audiences [Internet]. [cited 2022 Feb 22]. Available from: https://www.autism.org.uk/advice-and-guidance/topics/behaviour/stimming/all-audiences
Phe. How social care staff can recognise and manage pain in people with learning disabilities. 2017.
Royal Free London. Hospital passport | Patients with a learning disability | Disabled facilities | For patients, carers and visitors | The Royal Free [Internet]. Royal Free NHS. 2015 [cited 2022 Feb 24]. Available from: https://www.royalfree.nhs.uk/patients-visitors/disabled-facilities/patients-with-a-learning-disability/hospital-passport/
Royal Free London NHS Foundation Trust. This is my hospital passport. 2020 [cited 2022 Feb 24]; Available from: http://s3-eu-west-1.amazonaws.com/files.royalfree.nhs.uk/Learning_disability/Hospital_passport_RFL_v2.pdf
Tap Service Centre. What hurts self identification tool [Internet]. [cited 2022 Feb 22]. Available from: https://www.pathfindersforautism.org/wp-content/uploads/2017/01/what-hurts-self-identification-tool.pdf
As a pediatric provider and professor I love this resource you have created. Thank you! I am giving a presentation on caring for Neurodivergent pediatric patients in the primary care setting. I would really love permission to share your resources during my presentation with full credit to you of course. Please feel free to email me with further correspondence.
Hi there, I wondered if you were familiar with the Time for Autism programme being run by the University of Sussex. We have an autistic and learning disabled son and are due to be part of the programme this coming year where fourth year medical students visit families like ours to help gain experience working with autistic children and their families. Your resource if great and I wonder if the programme know about it. Thank you for all your doing, our own limited contact with emergency hospital care haven’t been great sadly so it’s great to read this post.