Autism Acceptance Week — changing the narrative.
Hi, I’m Andrew and I’m autistic. I’m also the Autism Programme Development Lead for NHS London. It still feels remarkable to have an autistic person in a senior role about autism, but it shouldn’t, and perhaps that is part of the problem that still remains in understanding autism better.
Of course, I’ve always been autistic, but I wasn’t diagnosed until around 10 years ago at the age of 40. I knew about some mental health issues and that I couldn’t differentiate foreground noise from background noise, hearing everything at the same volume. I knew I got dizzy when I walked into busy places and that I didn’t like bright lights. I knew I often felt antsy and restless, but I didn’t understand the connection with the environment I was in at the time.
I’ve used the word ‘diagnosed’ above because at present we still tend to medicalise autism. But language matters. I don’t ‘have’ autism in the same way that people don’t ‘have’ left-handedness. I am autistic. There is no non-autistic Andrew inside me struggling to get out. If I wasn’t autistic, I wouldn’t be Andrew — I would be someone else.
Perhaps we should be ‘identifying’ autism rather than ‘diagnosing’ it, seeing it simply as a difference rather than a problem or a deficit.
Indeed, one of the diagnostic criteria is having difficulties with communication and social interaction, yet research shows us that autistic-to-autistic communication is just fine. Neurotypical people often seem to live in the land of ‘-ish’ and ‘maybes’, whereas autistic communication often provides (and requires) more certainty, which is sometimes seen as being blunt, demanding or rude. By definition, therefore, I do not have a communication difficulty, but instead I speak a minority language.
It is important to frame autism differently so that the responsibility to adapt and change is not always on the autistic person. It can be exhausting and stressful when constantly being asked to translate into neurotypical language; if we all learn to speak a bit of autistic, it means we can share the responsibility and meet in the middle a bit more. For example, although I know that ‘back in 5 minutes’ doesn’t necessarily mean 5 minutes literally, that still doesn’t really help me. How long is ‘soon’ and how long should I wait before chasing you for a reply? I will tie myself up in anxious knots wondering at what point it will be OK to get back in touch without annoying you, and this uncertainty can consume me.
When we frame autism with negative language, it sends a message that it is a burden, and that needs to change.
When I hear of ‘treatments’ for autism, rather than accommodations and understanding, it sends a depressing message that society hopes we will cease to exist and, in the words of Jim Sinclair, that strangers you would find easier to love and appreciate will move in behind our faces. This in turn contributes to many autistic people having mental health difficulties.
So, I am glad that Autism Awareness Week is no more, and Autism ACCEPTANCE Week has replaced it.
An autism-friendly workplace starts, I believe, with that fundamental change to understanding that autism is not a negative and that I am different, not faulty. This has become known as the ‘double empathy’ problem — so that one side alone does not bear all the responsibility for adapting approaches or communication. Other changes we can make include accommodating the sensory needs many of us have, for example by reducing noise levels or chairing meetings just as we have done online during the pandemic, so that turn-taking is more obvious and there is a little more thinking space to take in information and process replies.
But mostly, let’s start by changing the conversation, meeting in the middle and learning to speak a little bit of autistic.
Do get in touch anytime on andrew.carpenter2@nhs.net.
