Why I want to stick a label on it

by | 5 Jan, 2016 | My diagnosis story

A note on language: I wrote these posts in 2016, when I was still uneducated about problematic language and functioning labels. I’ve chosen to republish these posts exactly as I first wrote them, unedited, and therefore you will notice that I use vocabulary I no longer choose to use, including ‘Asperger’s’ and ‘ASD’. I prefer the term ‘autism’ these days, and that is the term you’ll see in more recent posts. You may also spot some person-first language; these days I’m more likely to say ‘autistic person’ than ‘person with autism’.

I am overwhelmed by the response to my first post here. Your words have been encouraging, supportive, intelligent, full of praise (which I feel I don’t half deserve) and candour. Some of you have told me that you don’t know much about Asperger’s, but would like to learn (thank you for your open minded honesty). Some of you have said that you would never have guessed, and that my disclosure will not change the way you see me (I can’t help but think that it must, on some level). Lots of you have said my words are inspiring. All of you have called me brave (although when someone is strongly compelled to do something, as I was to share this blog, I’m not sure that brave is the right word exactly. But thanks).

And there have been some who have challenged my decision to pursue a diagnosis. (I am still the same person; I’m a lovely person with lots of great qualities; we all have our differences, our quirks and eccentricities; what’s the use of labelling myself? It won’t change anything at this stage. And if I fail to get a diagnosis won’t I just feel even worse?)

So, why do I want a formal diagnosis?

Where do I start? This might be hard for people who don’t have an invisible condition to empathise with. One friend (who I’ve asked permission to quote here) recently told me,

“I am so full of admiration for you… you have overcome all the challenges that come along with this condition and led what appears to me to be a very normal and successful life. There is so much you must have been dealing with inside and overcoming on a daily basis.”

Boom. There it is.  Recognition.  Recognition of what it actually means to have this condition: not just a set of ‘quirks’, not just a part of my unique personality, but a daily struggle to overcome sensory overload and social exhaustion, to appear ‘normal’ and not let the mask slip, not even for a moment (and believe me, it has, especially over twelve years of working with young people, who never fail to be both searingly perceptive and bluntly expressive!).

I want a diagnosis (not an exhaustive list, and in no particular order) because:
1. Having an invisible condition is hard work. After struggling with this alone all my life I would just like someone to formally acknowledge my condition and the challenges it has brought and continues to bring.

2. It will give me a sense of vindication: I was right. Like a detective on the verge of cracking a difficult case, all these years of questioning, wondering, hiding, obsessing over my every thought, action, conversation, will at least have added up to something.

3. I might be able to access some support. Just because I am what some people describe as ‘high functioning’ (a term I have little time for), does not mean my Asperger’s doesn’t impact on my daily life. (In fact, sometimes I think that it’s harder and more exhausting to spend every day making a huge effort to appear ‘normal’. There have been times I’ve wished I could just go and sit under a table all day, like a young person I once taught used to.)

4. I certainly don’t want to use Asperger’s as an excuse to get special treatment to which I am not morally entitled. But I am genuinely worried by the thought of what may happen to me later in life, when my autonomy and executive function may be taken from me through ill health or old age. (Yes, I know it’s – hopefully – a long way off, but it is likely to happen one day.) At the moment, I have a great deal of control over my physical and social environment. The thought of being an inpatient in an NHS hospital, lying all day in busy ward, full of strangers, under fluorescent lights, with no control over the temperature, noise levels or anything else, terrifies me. Similarly the thought of a nursing home, with communal living, television constantly on and staff coming in and out. I believe that a diagnosis might enable me to access future treatment better suited to my needs.

What about the stigma of having that label?
Well, the thing is, I don’t see it as a label (and stigma is just something that exists because… people). When I started coming out as gay in my late teens I didn’t think of it as labelling myself. Being gay is just something I am, like being short and female. Some people with Asperger’s choose to call themselves ‘Aspies’: this makes Asperger’s something we are, rather than something we have. I don’t ‘have’ lesbianism. I am a lesbian. By that rationale, I am also an Aspergian. In your face, label.

What if the doctors don’t agree?
Next Monday I’m going to face the unknown: my assessment with the psych team. I honestly don’t know what the outcome will be. But if the last year has taught me anything it is that we cannot use uncertainty as an excuse to not do important things. Yes, it’s a cliché, but if you don’t try you are certain to fail.

If the doctors don’t agree with me, then I will just have to regroup and consider my next move. Watch this space…

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