For as long as I can remember, I have really struggled with communicating and getting my point across to medical professionals. I have also found that understanding of autism isn’t very high amongst General Practitioners and mental health professionals. I wanted to share some of my experiences of this on this blog to highlight the areas where awareness still needs to better.
Misunderstanding of mental health
In the weeks leading up to my diagnosis, I really struggled with my mental health and needed an urgent appointment. When I rang my doctors surgery to explain this the response I got was, ‘you have an appointment next week, can’t it wait?’. I was really shocked to hear that that was deemed an acceptable response to someone who had been advised and needed to speak to their doctor.
Last minute changes
I rang my doctors surgery to ask if I could have a reasonable adjustment made to my appointment for someone to attend with me as I was having an extremely difficult day. The receptionist agreed and made a note on my file. However, when I arrived for my appointment I was told I had to attend on my own. This last minute change on an already difficult day had a significant impact on me.
Not understanding instructions
At the same appointment, I explained to the doctor that I was potentially autistic in the hope that they would understand what that meant. However, in the middle of the appointment they gave me an instruction that I didn’t fully understand and therefore didn’t carry out as they wanted. Rather than explaining the instructions in a different way, they shouted the instructions at me which only added to the distress I was feeling.
I have always found sitting in doctors waiting rooms to be uncomfortable. This has been largely due to the sensory overload caused by the noises coming from multiple different sources. I have a similar experience when in dentist waiting rooms as I find the smell in them to be overpowering.
Several mental health professionals have dismissed me over the years. I have often found that standard methods to help with my mental health to not have much of an effect on me. However, this has been viewed by mental health professionals as me not trying hard enough. On one occasion I was even told that by one professional that they always got results so it was something to do with me not that the strategies just weren’t right for me.
I really benefit from clear communication but have found that speaking to a different doctor every time means that I am often given conflicting information which creates a lot of stress and anxiety.
I can’t help you
One of the most common struggles I have had is with being told that they can’t help me so I need to try another person. This constant passing to other people has sometimes lasted over a week and is extremely exhausting to deal with.
All of these situations lead to the large amounts of health inequalities faced by autistic people which is something really needs to change in the future.