Guest blog authored by Beth Phillips, second year student, BSc Nursing Studies (Children’s) student at the University of Surrey.
April 2nd is World Autism Awareness Day. Admittedly, it’s often a day that passes me by, if not for social media reminding me, but that’s not because I’m unaware (just busy!). I’ve been firmly entrenched in the autistic community for almost ten years, since my now 13-year-old brother, Joseph, was diagnosed with autism spectrum disorder (ASD). Joseph, as well as my five-year-old brother Noah, have various co-morbidities and complex needs, but to this day it is absolutely autism that has the greatest effect on their lives.
My family and I have done everything that we can to educate ourselves on the best way to support my siblings – learning the sign-language Makaton for Noah, who was non-verbal until almost four, using PECS (a picture exchange communication system), trying out all sorts of sensory equipment, aromatherapy, various diets – you name it, we’ve tried it. But the best, most useful thing that my mum and I did was joining a Facebook group for autistic adults. My eyes were opened the second I could read about the experiences of autistic people through their eyes. Understanding the reasons behind the violent meltdowns Joseph still has to this day meant we could put things in place to therapeutically support him – and now they are incredibly rare. Did you know that the autistic community hate the language “___ has autism”? That they find the idioms about autism and jigsaws, “making the pieces fit” insulting and patronising? I’ve totally adapted the language I use and the comprehension I have of autism because I decided to listen to autistic people.
As a young carer, it was advocating for and supporting my siblings that ultimately inspired me into a career in children’s nursing. After all, ASD is a condition that is growing in prevalence – approximately 1 in 100 children in the United Kingdom have a diagnosis of autism spectrum disorder. As a student paediatric nurse, it is commonplace to come across families affected by autism during your placements – whether that’s on a general ward, in A&E, out in the community or even placements in special needs schools. Therefore, it is vital that as the future of nursing we do everything we can to educate ourselves about what these children and their families need when they are under our care.
With my personal experience, and now eighteen months into my training, I’ve picked up lots of tips along the way.
My top tips for nursing autistic children and young people:
1) Parents are your biggest and best resource. If you’re studying paediatric nursing, you’ll know that the concept of “family-centred care” is absolutely drummed into us from day one. This could not be more important than when nursing autistic children. Every single autistic person is completely different, and their condition affects them differently. A favourite quote of mine is by Stephen M. Shore – “if you’ve met one individual with autism, you’ve met one individual with autism.” My brothers, for example, are polar-opposites – one is hyper-sensitive, the other is sensory-seeking. One is extremely introverted, has chronic fatigue issues and crippling anxiety – the other is hyperactive, over-friendly and has no sense of danger. We support them both in very different ways. The most important thing to remember is the families know their child best. They know what works, what their triggers are – so use them. I had a placement in A&E at the beginning of second year and if a parent disclosed to me that their child was autistic during triage, I would ask the parent what we could do to best support their needs, and how their condition affected them personally, so I could work with my mentor to put things in place.
2) Language use: approximately a third of autistic people are non-verbal or have limited language use. However, a large proportion of autistic people appear to speak with clarity. Many high-functioning autistics have rich vocabularies and appear to use long, complex words which are sometimes inappropriate. This does not mean that they comprehend everything that is said to them. This is particularly relevant in situations where they might be at risk of sensory overload, such as in busy A&E departments. They may appear to understand but not be absorbing the information at all. Therefore, it is important to speak clearly, using short sentences and giving the patient time to process the information given. It is sometimes useful to check their comprehension by asking simple questions. Embrace the communication aids that the child may use – such as Makaton, or PECs.
3) Think outside of the box: it is useful to think creatively about what an autistic child in your care may need. Working with play specialists on wards can be invaluable in providing activities and sensory input for autistic children, whether it’s bubbles, or lights, or providing headphones to block out some of the noise. Dimming the bright lights might help or providing a quiet cubicle or space away from the hustle and bustle. I looked after an autistic teenager on the day surgery unit who was extremely needle phobic. I spent ages playing Jenga with her and talking about her special interests, and we allowed her to take some time away from the ward, and all of this reduced her anxiety, which meant she coped extremely well with the procedure that she was so worried about.
4) Educate others! As a student nurse, it can be so nerve-wracking to speak up in placement areas. However, there is still such a lack of knowledge, understanding and lots of mis-conceptions about autistic people amongst healthcare professionals. As student nurses, we have a responsibility to advocate in the best interests of our patients and part of this is using our knowledge to educate others. This is something that can be done politely – I’ve found approaching it in a polite manner with a positive attitude to be effective and as a result HCPs respect your thoughts. I also find it very worthwhile to educate fellow students about what I know – we had a brilliant lecture a couple of weeks ago about nursing children with complex needs and I took the opportunity to give my personal experience to the cohort.
This is a subject I could write about forever, and I may write further posts in the future about it, but I hope that the little snippets that I did provide are useful for you. I will finish with one of my favourite quotes:
“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg.” – Paul Collins
Here is a list of useful resources that student nurses, of any branch, can access to inform their practice when nursing autistic people:
The National Autistic Society: Autism guidance for health professionals – http://www.autism.org.uk/guidance-health-professionals
Mencap: Guidance and resources on caring for people with learning disabilities, Down Syndrome and autism for healthcare professionals. https://www.mencap.org.uk/learning-disability-explained/resources-healthcare-professionals
Government policy paper: ‘Think Autism’: an update to the government adult autism strategy. https://www.gov.uk/government/publications/think-autism-an-update-to-the-government-adult-autism-strategy
Information and support from Autism Alliance: https://www.autism-alliance.org.uk/
The Makaton Charity: Useful resources and information about Makaton, a form of sign language for people with communication difficulties such as autism – https://www.makaton.org/
Some free resources provided by The Makaton Charity: https://www.makaton.org/shop/shopping/browseStore/Free-resources
More free Makaton resources provided by Talking Point: http://www.talkingpoint.org.uk/resources/makaton-free-resources
Information from the National Autistic Society on using visual supports, such as PECS, for communication, plus lots of resources: http://www.autism.org.uk/visualsupports
A huge amount of free resources and printables which can be used by healthcare professionals to support and engage autistic patients: http://www.practicalautismresources.com/printables