Team DFTB. Communicating with children with additional needs: Liz Herrieven at DFTB19, Don't Forget the Bubbles, 2020. Available at:
Communication is vitally important in so much we do as clinicians. Without good communication we can’t hope to get a decent history, properly examine our patient, explain what we think is going on or ensure appropriate management.
(Editors note: After hearing Liz Herrievens talk at DFTB19 we just had to learn more)
People with learning disabilities, autism and other additional needs often have difficulties with communication. Adults and children (from 4 years old) with learning disabilities are three times more likely to die from something which should be amenable to treatment, compared to those without a learning disability. I find this staggering. Of course there are many reasons for this, including comorbidities, recognition of illness, access to healthcare and so on, but communication challenges have a huge role to play. It’s not just a challenge for the patient though, but also a challenge which we, as clinicians, must do our best to overcome. We think nothing of getting an interpreter to help us communicate with people who speak a different language to us. Shouldn’t we be thinking about communication with people with additional needs in the same way?
My daughter, Amy, has Down syndrome and autism. She has taught me so much over the years, particularly about communication. When I was asked to talk at DFTB19 on this topic, I knew I didn’t have long to speak and wanted to get the right points across. But what are the right points? I spent a morning with Amy, some of her friends and some other families I know with children with additional needs, to try to find out. We chatted about what did and didn’t work for our children when accessing healthcare and, in particular, visiting the ED. We also chatted about farting, made collages with stickers and ate chocolate. Lots of chocolate.
Speak to me, not just my Mum and Dad
This was a really common theme. When faced with something we think will be difficult, it’s natural to try to avoid doing it. So instead of speaking to the child with communication difficulties, we speak to their parent. And yes, the parent can absolutely give us some vital information, but the child is our patient and deserves our attempts at communication. We might need to ask the parent how best to communicate with their child, and that’s ok. As well as our verbal communication we need to watch our non-verbal communication. Eye contact can be very reassuring to some children, but very uncomfortable to others, particularly those with autism. Is our body language appropriate? Children with LD, and their families, are all too used to being stared at and treated differently to others. Let’s not fall into that trap. See the child first and their additional needs second.
Listen to me
As well as speaking to our patient we also need to listen to them. We might need a quieter room or more time. We might need some help from the child’s parents if their speech is unclear, or we might need support with sign language or the use of symbols if we’re not familiar with them. We must also watch for our patient’s non-verbal communication. It’s worth asking their parents to help us with this, too. How does their child show they’re in pain? Does their child appear to be comfortable? Is the noise they are making a sign they are happy or a sign of distress? It’s ok to admit what you don’t know – no-one can know everything and admitting this and asking for help will get a better outcome for your patient than trying to guess.
Watch out for diagnostic overshadowing. This happens when a person, who already has a diagnosis in place, presents with symptoms or signs which a clinician puts down to that pre-existing diagnosis, without looking for another possible cause. So, for example, a patient with autism who seems anxious and agitated, pacing or flapping hands, might be assumed to “just” have autism, without the clinician looking for the pain or discomfort which might be making him anxious or agitated.
Help me focus
Some children have difficulty keeping their mind focused. We can help by finding out what interests them and making that part of the history or examination. We can also help by keeping the rest of the room quiet and uncluttered, with fewer distractions. We might need to break up our clinical assessment with chunks of active play. Sensory or fidget toys can help by giving something to keep the child engaged. These can also be really useful in children with sensory processing problems or autism. In autism, where an overload of sensations, such as in a new environment, can be overwhelming, children may try to deal with their anxiety by channelling it into repetitive movements, such as flapping their hands or pulling their hair. They may also find using fidget toys helpful. Don’t try and stop these repetitive behaviours, which are known as “stimming” (unless the parents are trying to suppress a particular action as part of a behavioural programme), as this might be what is helping the child cope with being in hospital.
Routine and structure can be very comforting to some children. A simple “Now and Next” board can help to show the child that, although now is the time for feeling their tummy, next will come a time to play.
Help me understand
Some children with additional needs are able to understand an awful lot more of the information we communicate to them, if we help them to do so. This might mean something as simple as keeping the room quiet, speaking slowly and clearly, avoiding jargon and making sure the child can see your face and mouth as you speak. We need to watch the words we use. It’s so easy to slip into the language we are taught in medical or nursing school – that secretive language of long technical words that makes us sound clever. We also need to try to avoid metaphors – many children are literal thinkers and unable to follow abstract thinking. I remember an unforgettable restaurant experience when my son, who wouldn’t sit still, stripped off at the table when I asked if he had ants in his pants…
This article from the BMJ, written by a young lady with Down syndrome, is worth reading for more insights into the difficulties caused by the language healthcare professionals use.
Use the strengths of the child in front of you to help them understand. Children with Down syndrome, for example, have a relative strength as visual learners. They are far more likely to remember information presented to them in a visual format than information they hear. Use pictures, symbols, social stories or sign language (such as Makaton).
For more on the learning profile and development of children with Down syndrome, plus a fab selection of health-related information, see https://www.dsmig.org.uk/information-resources/by-topic/development/
Give me time to reply
We need to be patient when communicating with children with additional needs. Children with Down syndrome, in particular, have a significant sensory processing delay. It can take them 7 or 8 seconds to process and understand what you’ve said and formulate a reply. Don’t rush them, those few extra seconds can feel like a lifetime and can also feel a little unnatural, but it’s absolutely worth waiting for a reply.
I can understand more than you think
Most children with a learning disability don’t have a global developmental delay, but areas that are more challenging and areas that are less challenging for them. If communication is a challenge, it doesn’t necessarily follow that understanding is a challenge, and vice versa. It is important to try to gauge the level of understanding of your patient so you can help them to help you. Don’t talk over or around someone who is unable to speak to you – they may well be able to understand you and just because they can’t reply doesn’t mean you shouldn’t try to communicate to them. If someone appears to be able to communicate well, check their understanding, too.
Help me to see
Of course some children have other additional needs we need to consider. Children with sight problems, for example, need our help in specific ways. We need to ensure any visual materials we use, for example symbols, pictures, social stories, distraction resources, are appropriate – uncluttered, simple images work best, with a big contrast between light and dark and large, clear text. Avoid materials that are shiny, as glare can be a problem. Ensure the room you are in is well lit. Don’t stand in front of windows or lights. Explain clearly what you are going to do before approaching or touching the child and approach from the front, particularly if the child has narrow visual fields.
Any blog on communication will try to give you tips, and I’ve fallen into the same trap. Those tips cannot be generalisable. They are only useful to you as a clinician if they are relevant to the child or young person in front of you. All children and young people are different and that applies to those with a learning disability or autism too. Don’t assume anything. Find out what works for your patient. For example, eye contact and gesture can be invaluable for some children, such as those with hearing impairment or Down syndrome, but very uncomfortable for others, such as those with social communication difficulties or autism. Use the information available to you – previous letters or notes, hospital passports or “All About Me” books – and ask parents or carers to help you fill in the gaps. And please make a note of what works and what doesn’t, to save parents going over old ground next time.
Take your time, tailor your communication to the child in front of you and you’ll have a much better chance of getting the best possible outcome for your patient.
It’s also well worth watching Robyn and Tara from DFTB18.
Free downloadable visual resources including parts of the body and Now/Next boards: Makaton: Some signs and symbols for health professionals: Can your department take the LD Pledge? Social stories: GMC RCEMlearning How we’re using communication tools in Hull: Me First
Free downloadable visual resources including parts of the body and Now/Next boards:
Some signs and symbols for health professionals:
Can your department take the LD Pledge?
How we’re using communication tools in Hull: