Autism Health Passport

By Billie-Jade

Hospitals are unsettling environments for most people. They’re associated with a feeling of uncertainty and anxiety. For myself, they also mean piercing bright lights, pungent smells, headache-inducing electrical buzzing and beeping sounds from machines and too many people rushing down corridors. In my previous experience there has rarely been a calming moment in a hospital environment.

So, when I was told I needed to be admitted for a catheter ablation procedure I spent the weeks leading up to it riddled with feelings of anxiety and dread. I was nervous about the surgery, but I was more nervous about how I would cope on my own* on a ward with lots of different Doctors and Nurses, who I had never met, asking me questions.

*My partner and family weren’t allowed into the hospital with me due to the ongoing Covid-19 pandemic.

I’m not ashamed to say that when medical issues arise I often ask my Mum to come to appointments with me as she is able to explain to the Doctors, much better than I am, how I feel and what my concerns are. I often freeze up and would rather say, ‘I’m fine’ so I can leave the environment quickly than stay and get the help I may need.

I contacted the National Autistic Society regarding my concerns to see if they had any suggestions. They directed me to their Autism Health Passport. This is a document designed to help autistic people to communicate their needs to doctors, nurses and other healthcare professionals. You can find the link to download a blank passport here.

My Mum helped me fill-in the passport with all of the information I wanted the healthcare professionals to be aware of. At my pre-operative assessment I then handed it over to the nurse and asked for it to be kept with my admission file.

On the day of my procedure I was very grateful to find that not only had the document been kept with my file as requested but, the nurses on my ward and the surgeon and his team who were performing my operation had all read the document thoroughly.

The nurses on the ward asked what was necessary but never overwhelmed me with questions. They always talked me through what was going to happen before they did it and made sure that after my procedure I was able recover at home as soon as it was safe to do so; all things which I had noted in my health passport.

The surgeon was very enthusiastic about my Autism health passport. He kept thanking me for bringing it in and spoke openly about my concerns for the surgery with relation to how I experience my Autism, in the appropriate manner, to myself and his colleagues. The surgeon discussed with me how my concerns could be eased and acted on them.

The surgeon let me sit in on the team’s briefing so I knew what was about to happen, he gave me a dose of anti-sickness medication so I wouldn’t feel nauseous and the operating team even went as far as dimming the operating theater lights for me so that they weren’t as blinding. This all helped me to feel much calmer and more comfortable.

Thanks to the Autism health passport the surgeon, anaesthetist, nurses, scrub nurses, radiographer, and all other members of hospital staff who cared for me that day knew how best to approach me. They made sure they addressed all the concerns in my passport without me having to feel the added pressure of communicating on an already stressful day. I truly cannot thank each of them enough.

I was touched that for once accommodations were made for my autistic traits. I even shed a few tears later on that evening due to my disbelief at how far they went to ensure I was comfortable. Often, when I disclose my Autism people tend to acknowledge it and then move on, leaving me to use my own coping mechanisms at a great personal cost to my well-being. The acceptance I experienced in the hospital was a rare occurrence for me.

I was admitted to Wythenshawe Hospital in Manchester, England. I am so thankful to the hospital, the staff who work there and of course to the NHS for looking after me but more importantly for accepting me as Autistic.

I am also thankful to the National Autistic Society, for yet again, creating such a useful tool for people on the Autistic Spectrum to access and use.

I have attached an image of my completed Autism health passport below – blacking out any personal details – to be used as a guide to help anybody who may be struggling to complete their own Autism health passport.

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Read the original article on Billie-Jade's blog.

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