It’s now 27 days until my assessment and I’m not sleeping well or getting through simple tasks in the day. I’m visualising the assessment day and how I will handle it (badly – but that’s a whole other blogpost!), and I’m cultivating a new set of fears.
Fear Number 1 is that the psychologist will not find enough evidence of Asperger’s Syndrome and will say that I have some typical traits but not enough and tell me I have social anxiety disorder instead.
In the last few years I’ve gone from thinking there’s probably autism in my family’s genes but that I don’t display the traits myself, to thinking more recently that I possibly do have some traits, to now realising I have many traits and I just wasn’t looking in the right places (this was partly due to everything I’d read being about males with AS conditions). In the past month I have become 100% certain that I struggle with an autistic spectrum condition – probably Asperger’s, but I worry that if I had so much trouble recognising it, it may not be fully recognised by someone else.
What if the people I need the support from take the psychologist’s word over mine? What if I have to go back to pushing myself to the point of insanity to be someone I know I’m not? It would be like the light at the end of the tunnel being extinguished and me being trapped in darkness again. I don’t want to go back there.
I keep searching for an analogy so that people outside my head can understand how this feels. The only thing I can think of is imagine being gay and having to stay married to someone of the opposite sex. You’d want someone to say you don’t have to be someone you’re not. It’s clear you were not made that way. But what if you weren’t allowed to be gay? We all need to be allowed to be who we are.
Of course I know that anyone worth their salt will reach the correct conclusion.
Fear number 2 is that with an official autistic spectrum label I will now be faced with Asperger’s as an excuse. Not for me but for other people. What if my opinions and emotions are no longer seen as legitimate? What if people misunderstand me and instead of getting to the truth and letting me explain they shrug and release a small puff of air and make a mental note that it’s just my Asperger’s: I can’t help it? Will my highly emotive arguments in the future be dismissed as a ranting incompetent brain? Will people’s own failure to understand me conveniently become Rachel’s inability to grasp other people’s feelings? ‘Oh don’t worry about her – she’s autistic, you know? She doesn’t know she’s hurting your feelings.’
It genuinely upsets the crap out of me that autistic people are so often seen as self-centred, empathy-void machines (that’s another whole other blog post!). In my opinion it’s not true and it’s wrongly depicted by those who observe but don’t live in the AS world. My empathy bucket is flipping massive, I’ve have you know. I protect people from things I think will hurt them all the time. I also take on a lot of pain from observing other people, and I physically suffer for it. I may not always say and do the right things but I am thinking of other people all the time.
Fear number 3 is about others. I’m concerned for my loved ones. How will they cope? Will my husband be scared to ask me to do anything remotely challenging again? Will he try to absorb too much stress to protect me? Will people worry that they can’t say certain things to me anymore? Will my family worry that being themselves will impact negatively on me? Will they be embarrassed by the label? Will they say they preferred things as they were? Or will they do nothing and I’ll still have to pretend? I don’t want to use Asperger’s as an excuse for bad behaviour and I don’t want my family confused about what is unreasonable and what is excusable but there are times when even I don’t know how much of a git I’m being. Or how much of a git I’m not being!
It’s daunting and it’s filling up my head and I know I’ve not been great company recently, but it’s not long now.
All in all I know this is the right thing to do – it’s really important to me.
(And we’re all gits sometimes anyway. With or without excuses)