Understanding Autism: The Stress of Accessing Medical Care

I have had numerous bad experiences seeking medical help for myself. I am not alone in this.

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I have not sought medical help for myself for many years. I accompanied my wife to a lot of medical appointments in the months before her death, and I am very grateful for the care shown to her that was provided in a way that generally worked for her. But this experience reinforced in my mind the belief that attempting to access healthcare for myself would likely do more damage to my mental health than it would help me in other areas.

I believe that this is a struggle faced by other autistic people, some of whom have serious medical conditions and therefore have no choice but to attempt to use services that are simply not designed for their needs. At least one in a hundred of us is autistic, so this gap needs to be addressed with urgency. If a similarly sized group by gender or race were being so comprehensively ignored, it would be a scandal. But it seems to be acceptable to exclude autistic people in this way.

There are many reasons why autistic people find getting healthcare challenging. Sadly, there is still a huge level of ignorance about autism among many medical professionals, either based on outdated diagnostic criteria or from accepting stereotypes without challenge. I have lost count of the number of comments I have had on various posts I have made online from fellow autistic people reporting unbelievably ignorant things that medical professionals have said to them. What hope do we have of getting the care we need when there is such a lack of understanding among the caregivers?

Then there is the setting for much medical care. Many hospitals and clinics are not in any way sensory-friendly. They are full of bright lights, loud noises, strong smells, and large crowds of people waiting around. I understand that much of this is necessary for the functions being carried out, but that does not make them any more bearable if you struggle with one or more of these. Hearing lots of people at once melts my head, whether they are in a hospital or a shopping centre.

But by far the biggest issue for me is that I rarely feel I am listened to by medical professionals, and they always seem to think they know what is best for me without even discussing it or taking the time to listen to what I think is important. I know they are the experts, but the understanding that we are all different individuals seems to have eluded many. I have been to see a doctor for one issue and been prescribed drugs for something completely different that I did not want and which had side effects that messed me up for years. How is that in any way helpful?

The last few visits I have made to the doctors have all been followed by my needing to make a complaint about how I have been treated. I arrive home in tears, feeling unheard, misunderstood, and left in a mental state that takes me several days to recover from. I am simply not putting myself through that any more. The poor behaviour of medical professionals and the lack of accessible care for me and people like me is effectively excluding me from a basic human right. This cannot be right.

I hope that things are changing and will continue to do so. But in the meantime, I have to do what I know is best for my own well-being. At the moment, that means looking after myself.