I was assessed for and diagnosed with autism in my late forties. One of the things I have noticed since my diagnosis is that the way medical professionals interact with me has changed.
I have a lot of medical appointments for various conditions. Over the years I have had some very good experiences with doctors, nurses, physiotherapists etc. And some very poor ones, as I am sure is the experience of most people. And yes I have felt patronised as a woman at times, especially by male gynaecologists. But since my autism diagnosis I have noticed that the way doctors and nurses speak to me seems to have changed.
At first I thought I was imagining it. After all, autism is not a medical condition so how would these medical professionals even know about my diagnosis? But then one day I went to see the nurse at my local GP centre for a blood test. When I arrived she said `Oh I was just about to phone you and cancel. I can`t do this appointment today. I don`t have time` She pointed to the screen on her computer and there was a letter inviting me for a health check. The letter made clear it was an appointment especially for autistic people. I told her I was only there for a blood test. She apologised and did the blood test, but there was something about the way she spoke to me – more slowly, a softer voice. I had seen this nurse many times over the years, and her tone was definitely different. Not unpleasant or patronising, but softer and slower. It`s hard to explain.
I asked at my next GP appointment and it seems that my autism is flagged up when my records are opened. I found this really unsettling. It`s not that I am embarrassed about being autistic, but I don`t see why everyone who looks at my medical records needs to know if it isn`t relevant. I can see why this might be important for some autistic people, who may welcome this and any adjustments that are made for them to help them feel more comfortable/less anxious at their appointment, but I just felt exposed.
One time I did feel patronised was after surgery and a few days later I was feeling really dizzy, my heart was racing, and my breathing shallow. The doctor I saw snapped at me and said `you just panicked Jane, that`s all` but it turned out I was severely dehydrated which is why I had been feeling so unwell. I thought that maybe this doctor had seen my autism diagnosis on my medical records, and consciously or unconsciously, treated me differently, and not taken me seriously enough.
Most of the time I have noticed medical staff speaking more slowly and clearly to me, and using a softer voice. Some might say that this is a good thing, and maybe a result of training they have received. And certainly many autistic people will benefit from medical professionals knowing in advance about their autism and adapting their interaction style to suit this. But all autistic people aren`t the same and each of us can have different requirements, and find different things helpful. And while pre-knowledge of a person`s autism may be helpful to both practitioner and the autistic individual at times, I am finding that it is not always advantageous. While struggling to read people`s intentions towards me at the best of times, now when I have a medical appointment (though most of them have been over the phone since the Covid 19 virus) I find myself feeling like I am metaphorically being patted on the head.
My autistic son has co-authored two autism books, had his writing featured in two others, had many autism/disability related articles published on different forums, including a few in The Guardian, and had his own book published a few years ago. And yet he always used to say to me that when he was working with organisations, helping to deliver training on autism for example to GPs or the Police, he never felt like part of the team. Despite his intelligence, experience and knowledge he always felt like it was a `them and us` situation. Not that his non-autistic co-workers were intentionally patronising or excluding him. Still he always felt like he was being managed somehow. It was as if he wasn`t an equal member of the team, but rather that they were typical/normal people – the standard by which we should all be measured – and that they had to adjust their speaking style when interacting with him because he wasn`t one of them, and never could be.
I always sympathised with him, and felt upset on his behalf that he was made to feel this way, however unintentionally. But I didn`t really know how it felt. After my diagnosis when my son and I attended autism events together I was still always there as his Mum or carer, and not as an autistic person in my own right. At one event however, I decided to disclose my autism when we were asked to introduce ourselves. Normally at these events parents would make a bee-line for me during breaks times to talk to me about my amazing son, and how we had given them hope for their own situations etc. But not on this occasion. Not one parent in the room spoke to me. When I went over to the tea trolley to get drinks for us they all avoided looking at me, or speaking to me. They clustered together in an `us` group while my son and I sat on the other side of the room most definitely in the `them` group. And for the first time I truly understood how my son must have been feeling all these years. Since then I rarely disclose my autism at events because it makes people uncomfortable, which in turn makes me uncomfortable. And after believing myself to be non-autistic for nearly fifty years it is difficult to now see myself as autistic. And so it feels really weird when professionals, such as doctors, and nurses see my autism diagnosis flag up on my medical records, and automatically treat me differently than they did before.
And I truly hope that during those almost fifty years of being `non-autistic` I never came across as `us` when interacting with autistic/disabled/learning disabled people, because when I am now seen as `them` I feel demoralised, excluded, frustrated, and `othered`.
Jane
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You can find my sons book here: http://www.jkp.com/uk/communicating-better-with-people-on-the-autism-spectrum-34251.html
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