Long way to diagnosis

How did I know I had Asperger’s? For 39 years, I didn’t. At least, I didn’t until after my son was born and showed autistic symptoms, my marriage to aspie husband ended, and I’d had my umpteenth nervous breakdown (one every 18 months – you could set your watch by them). Not until I realised the extreme anxiety I felt daily, at the smallest task or change or transition (such as doing a chore, or leaving the house). Not until I obsessively read over 40 books about autism (to help my son) and kept thinking, well that’s not so weird I do/feel/am afraid of that. I found myself on every page, but even so years passed before the penny dropped. (We aspies can struggle to process information. Sometimes taking months or years to grasp something, often too late in retrospect. Those brilliant pesky thoughts that flash and dart away like fishes.)

I didn’t know for sure that I was aspie until I tried for 25 years to convince GPs, psychiatrists, nurses, psychologists, and psych ward staff that my symptoms weren’t ‘just’ depression. Professionals who brushed me off or misdiagnosed me (depression, anxiety, cyclothymia, bipolar – blah blah blah). Not until I told people and they ‘reassured me’ that I was imagining it or overreacting. Or that everyone feels a bit like that sometimes, or has one of those weird symptoms. Or that I should just accept that maybe I did have it, but why bother getting a diagnosis? (Or, alternatively “how do you know for sure, without a diagnosis”? Would anyone say that to someone with a ‘physical’ condition?) Not until I ended up having the worst breakdown yet, almost arrested in an A&E car park and subsequently enjoying the leisure facilities of an East London psych ward. It was then that my determination to push for an assessment crystallised. I booked an appointment to see Dr Judith Gould (the expert in diagnosing women, at the Lorna Wing Centre).

Some people said I should stop naval gazing and get on with life. That I thought too much, and was tediously self-obsessed. I’m sure I was. I’m sure I am. We can seem self-absorbed and selfish. One can tend to be, when living in hell. So, sure, I should try to accept relentless anxiety and depression, useless medications and therapies, condescending professionals, the shakes every morning (like a drunk with the DTs), being duped and abused by people, being unable to run all the parts of my life (including a child and a job) for too long without breaking down. I should accept being unable to navigate work or close relationships and conversations without feeling lost and confused, and then shutting down at conflict or criticism. Having shutdowns and mutism. Having meltdowns in busy places, like a tantrummy child. Being unable to communicate thoughts and feelings, until lapsing into suicidal thoughts and plans. Not knowing how I felt (called alexithymia) and that I was going down – not until it was too late. I should accept that socialising is painful, and leaves me exhausted for days or weeks afterwards. And that certain lights (fluorescent) and ‘normal’ noises (sirens, hand driers) hurt, and certain smells (perfume/’beauty’ products) cause nausea and headaches. To the point that it’s easier to stay at home. I should accept all that, without a thought. Easy advice to give – when it doesn’t affect you.

I knew I was aspie when everyone was so certain that I wasn’t. It wasn’t that I wanted to prove them wrong (I didn’t want to be an aspie). It was that I finally realised that no one knew how I felt, what I feared, and how lonely and desperate I was. How could they? They couldn’t X-ray my thoughts and feelings. And I couldn’t explain it verbally (one of my problem areas). No one could see my thoughts, and feel my feelings for me. (I often assumed they could, and was confused at people’s apparent lack of feeling.) I feel I can forgive anyone almost anything. Partly because I know I’m deeply flawed, and capable of many foolish words and acts. Partly because I’m naïve. And partly because I have the classic aspie ‘black and white’ thinking that everyone is good unless proved definitely otherwise (well, maybe not child murders and rapists, but you get the picture). I generally believe that everyone is capable of redemption. I am optimistic about humanity. This was an easy rule to live by. Except when I was so frequently cheated, hurt and let down. When people proved themselves to be predators and abusers. Now I am coming to understand the world isn’t quite so black and white. I am less vulnerable. Knowledge is power. And, yet, I am disabled. And there’s no cure.

What good is a diagnosis? It brings relief and understanding. It tells me that I’m not mad, bad or stupid (well, no more so than anyone else). I’m not merely selfish, socially inept and useless. All things I have either thought, or heard.

On the contrary. I am disabled. And, to be utterly modest about it, I am completely and undeniably brilliant. My diagnostic report says I’m highly articulate and intelligent. It says that my struggles with communicating, socialising, and sensory overload mean that my achievements mean more. Because I’ve faced the demons inside, and often won. That simply getting out of bed every day is the ultimate act of bravery – deserving of swords on the shoulder, and medals. Now, rather than having “dropped out of jobs after a few years”, I have “successfully held jobs for several years”. That paradigm shift is vital – for sanity and self-esteem. I finally deserve to wear that awesome Wonder Woman outfit I had when I was six (and wore under my school uniform, so I could perform superhero deeds at a minute’s notice).

I am brilliant with words. Call that aspie arrogance or aspie honesty – take your pick. (As I’m aspie I’m not listening to you anyway.) Leave me alone to do my job, and I’ll do it better than anyone. But ask me to manage people, or to juggle socialising or work in an open-plan office with its sensory input, and I struggle or shut down. I don’t know how to start and end conversations. Don’t know when I’ve said too much or too little, been too harsh or too much of a doormat. Don’t know if I’m perceived as selfish and egotistical. (I’m guessing I probably am seen that way, but we aspies lack self-awareness. Then we give up caring.)

A diagnosis says there are limits to how much I can change. My brain is wired this way. Yes, the diagnosis is a death and a grieving, of sorts. Of who I was and the possibilities that I felt were in me. (I may never be the first aspie Prime Minister, and sort this damn country out. Or maybe I will be. Who knows? I don’t envy those PR people, who’d have to media manage my gaffs.) However, it is not an excuse. It is not a reason to opt out of life and become a hermit – no matter how much I desire it, because it reduces the relentless stress and anxiety. Quite the opposite, it is a freedom to accept who I am. A release. A way to forgive myself for my mistakes, and to start anew, reborn. It means I now know that I can do anything I really want to do. It is a way to break out of the confines of gender roles that say who we must be, what we must wear, how we must fit in and behave. It is freedom to admit my loathing for loud places and parties, socialising in groups, crowds, perfume, make-up and high heels, shopping malls and phone calls. The ‘normal’ trappings of a socially constructed, gendered, consumerist society.

A diagnosis is as exhilarating as the biggest and best orgasm, and as sobering as cancer.

A diagnosis is not a licence to offend without thought or reflection. (To talk about orgasms on my work blog.) On the contrary, I hope it may bring greater awareness to my actions. More awareness of the impact I have. And maybe, just maybe, that the all-important ‘they’ – the ones who matter – will understand.


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