In 12 days’ time I have a dental hygienist appointment.
This might seem like an insignificant event to most people, and it might seem odd that I know exactly how many days away it is. But that’s because I’m dreading it.
It’s quite common for people to dislike, or even fear, the dentist. However, for autistic people like me, appointments like these can be even scarier, and a lot trickier, for different reasons. The last time I went, I got through it, but not without a lot of trepidation beforehand.
Most people have experienced waking up in the morning with a funny feeling in their stomach, and momentarily not being able to remember what it is that is unsettling them. Then the wave of anxiety hits. And along comes nausea, shakiness, and feeling on edge every time it crosses your mind.
Imagine feeling this dozens of times every day for weeks, just because you remember you have a dentist appointment in a few weeks’ time.
Half-an-hour of lying still, having my teeth poked and prodded, gloves leaving an uncomfortable after-taste in my mouth, and with loud machinery leaving my ears sore as well as my teeth – they press that apparatus hard! For an autistic person with sensory difficulties, this is hell.
It’s not only this appointment which is tricky. Even calling the GP can be too overwhelming because I hate making phone calls. They usually begin with me struggling to get my words out and struggling to convey what the problem is.
Phone calls are too unpredictable, and I can’t judge social cues. So, I just don’t pick up the phone, and I don’t end up getting my health checked.
If I do manage to make a GP appointment, usually with help from my mum, the pain of sitting in the waiting room with loud music piercing my ears is even more overwhelming. Then, if I make it into the consultation, it is impossible for me to answer the doctor when asked to locate and describe the pain I am feeling.
This is because of interoceptive difficulties, something a lot of autistic people struggle with. This makes it hard for us to identify different feelings in our bodies.
Barriers to healthcare for autistic people are everywhere. In every field of healthcare, in every stage of the process. A 2022 study found that 80% of autistic adults find it difficult going to the doctor when they need to. And worryingly, 34% didn’t access treatment for a ‘potentially serious or life-threatening condition’.
The reasons for this are vast. Quite simply, healthcare is often inaccessible for autistic people. Whether that is due to difficulties booking appointments from a lack of alternative options to phone calls, difficulty communicating the problem to the healthcare practitioner, sensory difficulties from the environment and healthcare procedures, or feeling judged, this inaccessibility prevents autistic people getting the right healthcare.
I’ve experienced all of these at different times. Waiting rooms with such loud music my anxiety is already imploding by the time I get into the appointment.
Doctors who have sat in front of me and told me I’m being difficult because I can’t answer their questions about where the pain is. Staring at my phone, unable to make a simple phone call to book an appointment.
When I’ve tried explaining this in the past, I have been told to ‘get over it’. I’ve been told that it’s not difficult to pick up the phone, and that I’m making the choice to not look after myself.
But it’s not that easy. Each day already has so many difficulties in it, like navigating social situations and tolerating overwhelming sensory environments, that I am normally too exhausted to add to those.
Moreover, since the pandemic, I can’t even book a proper in-person GP appointment. I have to call at 8.30 in the morning to make a phone-call appointment for later that day. I can’t do that. It’s too uncertain, disrupts my routine, and makes me feel on edge all day.
We need healthcare to change. This begins with professionals having a proper understanding of autism. The last time I tried to seek support from a service, they said, ‘You suffer from autism, is that correct?’. That showed me that they didn’t understand, and that meant I struggled to open up.
I don’t suffer from autism: I am autistic, and that’s not a bad thing. I just need a bit more support sometimes.
We also need professionals to understand that when we say we can’t do something, we mean that. For instance, me describing the type of pain and the location of it is something I just can’t do.
I can’t give you any more information than the fact my foot is hurting. I can’t tell you whereabouts on my foot – and I’m in awe that other people can. I don’t mean to be difficult, and it certainly won’t help me magic up an answer by repeating the same question five times.
It’s not just professionals who need to adapt. It’s environments, too. These need to be accessible to autistic people. We need music to be quieter. We need to be warned about different textures and sounds of devices. We need lighting to not be so bright. We need to be able to get through that appointment without feeling overwhelmed by sensory overload.
Some of these adjustments aren’t much to ask at all, and yet they make our lives a hundred times easier.
I know my upcoming appointment will come and go, just like every other appointment does. I’ll get through it, probably by trying to distract myself by thinking of nice things during it, and by spending lots of time recovering afterwards by lying under my weighted blanket and watching Grey’s Anatomy.
Ultimately, though, things could be a lot better. Many autistic people are being failed by the healthcare system. That has to change, and fast.
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