An Open Letter: Dear Family and Friends, Why I need to live as an Aspergirl (or a woman with Asperger’s Syndrome)
Dear Family and Friends,
Why I need to live as an Aspergirl (or a woman with Asperger’s Syndrome)
Lately you may have noticed what might seem to be an inordinate amount of self-indulgent navel-gazing from me. However I prefer to call it mandatory self-reflective self-awareness after a lifetime of avoiding dealing with myself and a feeling that I have a confused identity.
It’s only three months since the rather swift realisation that I must be on the autistic spectrum, and only 6 weeks since a psychologist agreed with me. And this processing and resetting of who I thought I was has brought enormous highs and lows (the lows mostly come in the form of unhappy memories), plus a tonne of necessary thinking. At 44-years-old, it’s an enormous thing to take in, and it can’t be done overnight or even in a few weeks or months.
I am re-evaluating and examining my past, present and future, and am currently completely wrapped up in a new way of thinking about myself and the world around me. I realise now how different other people are from me in the way they handle life and emotions. Although I feel different about my place in the world and am readjusting, I’m not so completely different in my head or my actions because I’ve always had autism, so I’m still me, but I can better see why I find other people so perplexing and always have. I suppose, in a way, I am readjusting other people just as much as I’m readjusting myself.
Mostly I’m very happy and relieved about the diagnosis, but I am still finding life difficult and still suffer with anxiety and still swing back into trying to cope like a “neuro-typical” person (that’s the non-autistic brains among you). Recently though, I’m beginning to use the Asperger’s like a gentle hand on the shoulder to say ‘You are pushing yourself too hard. You’re heading for a meltdown. You really don’t need to hate yourself. It’s okay to say you can’t do this.’ And I find the most beautiful peaceful pleasure from finding myself in the middle of doing something alone for hours and knowing now that that’s okay.
But it’s still just the beginning and I’m still in a bit of a mess. I don’t know how long before the dust settles and I get to feel I am successfully rebuilding my life. Currently I feel like I lay 10 bricks and then knock 8 over, and I’m having some fairly distressing days. And I can’t shake the guilt.
The guilt is enormous.
You see I can’t get over the feeling that my actions and needs affect you all and you will never quite understand or accept it. Knowing that other people have a different brain wiring from mine means I’ve been misreading many of you – and you me – for 44 years. And that will never stop. And yesterday that feeling made me want to cry and cry and cry.
I don’t think people with autism ever completely grow up. In many ways this is good and keeps a sense of wonderment and excitement and a thirst for new knowledge surging through us daily, but in other ways it makes us vulnerable, easily distressed and regularly disappointed with the world.
I need you all to know that I am not being selfish at the moment and I don’t feel angry or depressed or unsociable or uncaring but I do feel busy. I feel very busy inside. I can’t remember things you’ve told me, I can’t always remember to say the right thing at the right time. I can’t read all your emails, I can’t remember dates, I can’t take in information and I can’t hold a decent conversation. For years I made motherhood and family my life’s project and pushed myself to perform whatever role was necessary for each individual person in my life. It meant that I did very little else – because for a person with Asperger’s to get things right we have to focus on one thing at a time. Looking back to when the children were young, I really threw myself into “Project Parent” and failed to understand how anyone could possibly be doing anything else.
So now, I am taking some all-important time to think about me so that I can make more sense of things and get those bricks to stay in place. Breaking out of this readjustment phase to go back to pretending to be normal seems to be impossible. It’s as if I need to back away from everything and everyone for a while.
What I ask of you is patience and your permission for me to be quiet. And please let me continue to be self-reflective a little while longer.
When I find my bricks are staying in place more often, and I feel stronger, I think I will be less obsessed with Asperger’s and autism and how it fits me, and I will just live it. And live it I will. I think if you’re autistic and you’re not living as an autistic person in your head and in your understanding of yourself – either because you’re completely unaware, in denial or wish to pretend to be normal, then you’re not giving yourself and those around you the opportunity to regularly remind yourself that people don’t think or react the same way you do and not just in an “everyone’s different” kind of way but in an “autism is different” kind of way.
Right now I think that going over what I do and how I react on a daily – sometimes hourly – basis is important and helpful. How I am perceived by others has always been important to me and always will be. I care very much if I think people have got me wrong – and unfortunately I feel this has happened all throughout my life. Going back in time and revisiting past events, conversations and relationships has been difficult and painful but instead of leaving dirty old bandages over festering wounds, I want to open them up, clean them and let them heal. I’m surprising myself by feeling quite forgiving of people I’ve hated or felt hurt by for years, because I can see now how they didn’t understand and how easy it was for them to get me wrong.
And now a request for the future: I wish you could understand the difficulties and the exhaustion, and not take my actions at face value. I wish you could know that my silences are nothing personal. I wish you could look through the lens of autism and see that an expression on my face, a tone in my voice, an action, a silence, a disappearance are not what you think they are. But if you have a neurotypical brain that’s not possible and you see the world through that lens and interpret things differently from me. So instead please can I ask you to know that you simply don’t understand (I know some great books if you do want to understand!), and that when you think bad of me to think again because I’ve been fighting every day to fit and not get it wrong and to do what I think you want of me, but because of my brain wiring I don’t understand you either and my version of right might be your version of wrong. For the near future I need space and time to deal with what has happened and is happening and I can’t guarantee anyone anything. That’s just how it has to be.
Change is massive and distressing for people with autism. In recent years I’ve had to attempt to deal with my family splintering and reducing through sisters moving away and my father and father-in-law dying, and my fragile sense of identity being smashed. Creating a new sense of identity is slow for me and I’m finding I need extra time alone to process at my extra slow rate.
Ironically, as an autistic person, even though I may back away, I need you all more than you will ever know. Because having a small number of people I can trust and feel safe with is everything to me. And when I love people I really, really love them. All of my emotions are off the scale. I’m just sorry I can’t always show them in the typical/expected ways.
Please know I am doing my best, even when it doesn’t look like it. And in my head I am working hard all the time.
Deepest, fondest love,