So in my last post I mentioned cancer.
I was trying to explore the idea of seeking clinical help for something with which I was struggling. To find answers. Not, for any moment, to suggest autism is like cancer.
The examples I used were of two other times I’ve been assessed by the NHS, over and above the time I was assessed for autism. Once as a child with a swollen wrist and, post-autism diagnosis, once with a suspicious lump. The wrist turned out to be broken. The lump? Cancer. I was diagnosed almost two years ago, on the day I originally started contacting people in a search for funding for my PhD.
Now, people expect you to seek a clinical diagnosis for a physical issue such as these – something broken or lumpy, leaking or sore. Something that – without intervention – will not mend properly; will not ‘be as it should’. Might make you ill-er. Might cause your death.
Neurological differences that no one can see? Not so much. Not unless they are causing someone else pain.
First of all, our society currently values conformity and uniformity of outcomes, and a lot of us (not all) #actuallyautistic females do our best to try to fit in with that, and with society’s expectations of how a woman should behave. This can mean minimal observable behaviours (in public), which can make it very difficult for some people to comprehend that we could struggle with anything at all. A teacher I interviewed as part of a research project said of an autistic girl in her class:
‘I just don’t see it. I don’t have to deal with anything’.
Suggesting that the support required by that particular autistic girl should be based on how the teacher was impacted; rather than the child.
Secondly, seeking a clinical diagnosis of autism puts you at risk of being aligned with the medical idea of ‘fixing’; with things ‘being as they should’; therefore needing a cure – which is certainly not my view. Or, as I read last week, at risk of needing a doctor to tell us who we are, rather than simply being able to self-affirm our autistic identity. (Because most of us have already self-identified as autistic in order to be on that clinical pathway.)
And there has been a lot of discussion on social media recently about the validity or otherwise of self-diagnosis. Would self-diagnosis have been enough for me? For me, at home, with my immediate family – yes, absolutely. Outside the castle walls? No, I doubt I would have ever raised my head above the parapet. I would have kept my difference inside.
But a clinical assessment is not for everyone. Getting a formal diagnosis has historically been much harder for a woman, for a number of reasons. And the outcome of an assessment is not always correct – they are subjective and dependent on the experience and knowledge of the Practitioners. Appointments are not always readily available. They are not always free. Yet self-diagnosis may be less widely accepted by society than a clinical diagnosis, and that perhaps is where the desire for a clinical diagnosis comes in; that wish to be ‘accepted’; to be ‘known’, in their language; on their terms.
For me, seeking a diagnosis was part of my route to understanding who I am. It has given me the confidence to stand up and say ‘this is me’. Part of healing the holes and tears that a lifetime of feeling different and ‘not enough’ had caused. Part of a pathway to psychological support for my mental health. An enlightenment. I know for sure that accepting and loving myself ‘just as I am’ made a huge difference to the way I approached and lived through my cancer treatment: straightforwardly, with openness and positivity.
I did not seek a cure for autism, but knowing and embracing my autistic self has improved the rest of my life – enormously.