I was 13 when one of my classmates asked me if I might be autistic. He asked me because I didn’t really mix well or understand people particularly well (still don’t), had a very narrow set of interests (still do) and hated loud or unexpected noises to the point of actually crying (still do, but over time I have managed to find ways of coping with such stimulus. Thank God for iPods is what I am trying to say.)
Over the years, more people have asked me if I might be on the spectrum. My university flatmates, my work colleagues, counsellors who did their best to help with my depression and anxiety and eating disorder but could never seem to get to the heart of why I was so sad and scared all the time. And while I did acknowledge that yes, the possibility that I may have Asperger’s or high functioning autism, I also said that I did not especially want to know. I thought I could struggle through my issues, that they would fade with time, and that one day I would be 'normal'.
At the time of writing, I am 26 years old. And I have come to the conclusion that I need to find out exactly what is going on with me or I will never be happy. So I have finally taken the advice that so many people have given me over the years and have arranged to have myself tested for autism.
Well, tried to anyway.
I understand. This is the NHS, and moving at a snail’s pace is par for the course. I know that it will be months before I actually sit down in front of a specialist. What I did not expect was to be met with a blank look from my GP when I asked to be referred. He honestly did not know what to do and, in fairness, he has sent out a letter making enquiries about the correct procedure. But surely he should have known what to do in the first place? Or better yet, maybe asked the nurse in my GP practice if she had any idea of how to go about this?
There are literally thousands of resources available for doctors and nurses who need to work with individuals with autism. Just type in autism nurses on Google. There are links to NICE articles and guidelines, helpful websites offering advice on how to deal with patients on all points of the spectrum, and accounts written by nursing staff who have actually dealt with people with autism. There has to be the correct guidelines on how to refer a patient for an assessment on there somewhere, but it seems not to have crossed my GP’s mind to do some research.
For people like me, such an attitude could be harmful. To live in a world of uncertainty is stressful enough; to have more uncertainty and suspense added in on top of that is enough to drive you to pull your hair out in frustration. Although I am not sure I am being especially fair to my doctor. If he had more awareness of autism and how to spot the signs and how to make sure people with the condition got the help they need, maybe he would have been more quick to get my assessment set up.
This is where a nurse could come in. If clearer lines of communication existed between doctors and nurses, maybe information like how to get an autism assessment would be more common knowledge. Maybe if my GP had asked my nurse for help or advice, maybe if my nurse had a larger role in the running of my local practice, then perhaps more people could be helped. But as things stand, I have been left in limbo and so have countless others who have been let down by a simple breakdown in communication.
Doctors and nurses need each other. Their patients need them to work together. Otherwise all that will happen is that treatment will be delayed or disregarded, and that could cause all kinds of problems.
Adam Langley, blogger at Adam Ranting