I was listening to a BBC podcast yesterday. It was an interview between an ex-soldier who has become a radio presenter and an ex-soldier who has become a Paralympic athlete. Both have been seriously injured by IEDs requiring long term rehabilitation. There were many interesting things in this interview but what most caught my attention was their discussion about identity. They went from being a marine and a paratrooper with clearly defined professional lives to being disabled ex-servicemen. This new identity was not how they wanted to be identified as for whatever reason, and certainly in the case of the Paralympian the impetus to strive for something else and to gain the identity of a Paralympic Athlete. It is an inspirational title without stigma.
I was giving a new identity just over a year ago when I was diagnosed as autistic. Different people will refer to me as being Asperger’s or high functioning, but what they are really saying is that I am able to camouflage my autism so that I can pass as “normal”. My new identity gave me permission to stop camouflaging and to be the real me. The problem there though is that forty plus years of pretending means I don’t know what is real and what is camouflage. So being diagnosed as autistic is not only being given a new label, a new identity, it is about working out what that means for me.
I have been reluctant to grab my new identity and run with it though (at least in public). On the face of it there is nothing inspiring about being autistic. I am sure I have my own prejudices about what it means to be autistic but I don’t think it is an exaggeration to say that society as a whole has prejudices too. There is a stigma attached. To be autistic is to be “not normal” which means, at least in the UK, an awkwardness in knowing what to say or how to behave. Heaven forbid that we actually say we feel awkward, no, in true British style I get the stunned silence treatment which hangs there until somebody decides to introduce another topic. And like a true British person, I hide my hurt and hope that maybe something has changed below the surface that will bubble up into my listeners consciousness at some time in the future. I decided to stop forcing myself to do the “coming out” thing. It doesn’t get the response, the support, I look for, so why expose my vulnerability in that way. My new identity doesn’t seem to work within my existing relationship very well. Too much information perhaps?
The thing is that I don’t want people to think of me as autistic. I want them to think of me as me. Not labelled as something or other and grouped as different, because we are all different, we are all unique. Equally though I know it is the human condition to analyse, to group things, to make generalised statements because if we didn’t, our brains couldn’t cope process all the information. We filter information according to the situation so that we can make decisions and continue to survive. Well neurotypical people do. Filtering and processing is not something I find easy because I am autistic.
And how should I expect my friends to be able to handle my coming out as autistic? The statement could be saying:
“Look, I’m really not who you thought I was. I have been lying to you all these years. I don’t suppose it helps but I was lying to myself too.”
The thing is that we all wear masks. Some are deliberate and necessary all the time and some are situational. Some masks are obvious to ourselves (e.g. hiding your annoyance at a sibling’s partner) and some are out of our awareness. My autism was somewhere in between I suppose. I had thoughts when I was sixteen that I was autistic but I didn’t know it was a spectrum in those days. I used to say that all men are autistic, just that some are more than others. Now I tend to say people might show autistic traits (it isn’t just men after all) and leave the official diagnosis to people who have studied that. The point is that I have changed in my assessment of myself and others because my understanding has changed. I no longer just have autistic traits, I am autistic and my particular form is a sum of my autistic traits.
We were having dinner with friends recently. One of the couple has had a cancerous tumor removed. This isn’t mentioned at all when we meet them because that person isn’t ready to cope with the emotions stirred up by recalling the event. Their partner makes sure this collective mask is held in place. It works too because I had actually forgotten about the cancer episode. Last night was different though. My autism came up in conversation and through that we talked about identity. I told them about my reluctance to be seen as autistic which showed by my difficulty attending the local support centre. For a year I have been unable to face going to the local centre set up specifically to support autistic people. On Tuesday I will be going to a series of support groups for late-diagnosed adult. I feel ready to face this hurdle. I also talked about how through acknowledging my depression I was led to writing my blog which led to getting the autistic diagnosis.
Our friend found my journey inspirational. They had no being able to write about their experience of cancer. They had not been able to attend a support group either. Cancer is not a word they can say. It is just too overwhelming for them to acknowledge the cancer’s existence and the continuing effect that the consequential operation had. And maybe they still can’t write or get support now but what they have done is to talk about the situation, to acknowledge that is exists. I think that is an important first step. What I take from that is that though my autistic identity may not be inspirational in itself, that my journey can be.
As I drove back through the blizzards from Glasgow last night, my wife was telling me that a woman had suggested that menopausal women should wear badges with a big letter M on them. My immediate reaction was to say, “like the Jewish yellow stars you mean”. She said that was one interpretation though the idea was to allow others to make accommodations to menopausal women. The menopause is another taboo subject in public, but I am against labelling people physically or verbally. I believe society should move away from expected homogeneity to being inclusive of all our differences visible or not. Our identities are another mask anyway, marketing to present the world a socially acceptable face. Whether you are a disabled ex-serviceman or a Paralympic athlete, it is not the identity that is important to me. It is the story behind the identity where inspiration can be found.