Genevieve Rice speaks to Stephen Simpson, senior autism practitioner at South West Yorkshire Partnership Foundation Trust about changes in the way in which autistic patients are seen and cared for.
‘People will tell you things if you ask but you must be willing to ask’
Imagine glaring lights, an overwhelming medley of odours, bright colours that hurt your eyes, outside pressure to make seemingly life-altering decisions, and never-ending noises that run into your ears to wreak havoc on your ability to focus. This is what individuals with autism may experience every time they visit a healthcare service.
Patients with autism face an incredible number of deterrents from receiving adequate healthcare, including hypersensitivity to light, smell, and noise. Anything from the brightness of a room to the number of smells can be detrimental to the level of care that patients receive or if they even go to a healthcare service at all.
Stephen Simpson, senior autism practitioner at South West Yorkshire Partnership Trust, has been fighting for people with learning disabilities for years.
“For me, it’s all about making a difference, making peoples’ lives better. It’s about helping and supporting people with learning disabilities – autism as well,” said Mr Simpson. His way to make that difference came in the form of a checklist.
His dedication prompted him to put together a checklist for an autism-friendly environment, guiding trusts across the country in modifying their facilities and training their staff – thus allowing those with autism to have equal access to care and support.
His checklist addresses questions on olfactory, auditory, visual, and body awareness, and has been implemented in the clinic where he works as well as adopted by National Institute for Health and Care Excellence guidelines.
A nurse of 20 years, Mr Simpson works with the Adults with Autism Service, whose multidisciplinary team offers assessments and interventions for people who are diagnosed with autism or attention deficit hyperactivity disorder. “I fell into autism care like most things in life – accidentally. I got my degree in autism in 2000. I actually applied to another course, but it fell through at the last minute. I have been on the autism team since 2014,” said Mr Simpson.
This ‘accident’ has brought about changes in the way that patients with autism are seen and cared for, but Mr Simpson’s dreams for autism awareness and care do not end with a checklist. In the next five years, he wants to make his trust autism friendly.
“I encourage people to take notice of me, but it’s quite difficult because you’re changing peoples’ culture of things – I tell people that when making appointments, ask “Is it okay in here?”. People will tell you things if you ask, but you must be willing to ask,” he said about the difficulty of turning a whole trust autism friendly.
His next goal is to improve diagnosis for autism by making it faster. According to the 2011 census, 1.1% of people in the UK have autism, and many are misdiagnosed. Improved diagnosis, raised awareness of the challenges of those with autism, and a more autism-friendly healthcare environment will greatly improve the quality of life for people with autism in the UK.
The developments that Mr Simpson made at his own trust are a model for the rest of the NHS and the kind of changes that can and should be made to make healthcare truly accessible to all.
From acquiring light dimmers, which cater for a patient’s individual needs, to changing all their clocks to non-ticking clocks, thus lowering the noise stimulation, the clinic demonstrated the kind of small changes that make an enormous difference in the quality of care that patients experience.
Mr Simpson said: “It is very difficult to change culture and people. There are compromises to be made. There will be a cost, but everyone can make some changes.”
How do I get to be you?
Sometimes being me and getting to be me is all about the small things that can make a big difference to people’s lives. As a nurse and a specialist learning disability nurse, who is now working with patients with autism, I find it a privilege to help amazing people along their life journey.
If you were to reflect on your day, your week and the help and support you have given, you should be proud.
We learn from mistakes, so don’t panic about making them. Ask lots of questions – many questions – and respect yourself and others.
Working with people with a learning disability or autism is not glamourous, but I know I change lives for the better every day – and you can too.