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So now what?

Things I’ve been asked since diagnosis:

1. But you’re not really good at Maths! (A statement rather than a question, but still…) 

Well no, I’m not. Because we’re all different. But language; that’s my maths! Words, where they come from, their varied meanings, that’s where my passion lies. Not literature, although I love reading, but the actual words themselves! The choices are endless and the meanings so nuanced. Reading books and studying language, semantics, pragmatics, has given me the tools to interpret life, the universe and everything.

2. How have things changed?

In many ways they haven’t changed at all. And yet, my world has turned on it’s head.  I now have the gift if self explanation, I know why I do, say and feel things. I can explain this to others and it’s already provided life changing. I am reaffirming friendships and growing in confidence. As a result, I am learning self acceptance, though this is a very difficult thing to do. I have more awareness of my strengths, I am better able to communicate with others, both my own needs and to ask what they need from me. I am learning to accept other ways of thinking and doing. I am in the process of accessing support at work. But, despite all this, I’m the same Becky with the same loves, interests and fears as I was back in May, before diagnosis.

3. So do you, like, have to take medication or something?

No, I’m not ill. I don’t need fixing. We’re all different. Everyone experience’s life uniquely. The anxiety born of not fitting in can be medicated. The stress of a constantly changing and fast paced job can be medicated. The frustration from social isolation can be medicated. I’ve been on medication for stress and anxiety for some years but their root cause, my autism, cannot be treated. If those of you with neuro typical brains lived in a world full of autistic people it would probably make you so stressed and anxious you’d need treatment. And if the whole world was autistic, I’d be doing just fine. 

But really, I AM doing just fine. And if there was a magic pill to make my autism go away, I’m pretty certain I wouldn’t take it!

What it is and what it isn’t.

People have said to me, “You don’t seem autistic” and “I’d never have guessed”. Part of that is because, I’m told, girls are conditioned differently and grow up learning to ‘mask’ their autistic traits. Sadly, that is to mask huge swathes of their personalities😢

I think the other reason is that I don’t fit the stereotype people have in mind. My voice isn’t funny, odd, robotic. I’m no mathematical genius. I’m a bit blunt at times but rarely rude. I have no OCD and I don’t alphabetise my CDs or arrange my fridge by colour. I’m no Rainman. In fact I’m not a man at all. And there in lies the key to why people are surprised. The presence of breasts and a vagina, ovaries and oestrogen acts as some sort of autism cloaking device! And that’s the problem with stereotyping, isn’t it? I read a great quote, I forget who said it: “When you’ve met one person with Autism, you’ve met …one person with Autism”. It’s not called neuro diverse for nothing!

For me, Asperger’s is none if those things. Here’s what it is:

On the one hand it’s social anxiety, crippling nerves before an event I’ve been looking forward to. It’s exhaustion, misunderstanding and over stimulation. This can be anything from getting very anxious in crowds, made worse now I’m a mum with other people in my care, to clothes that itch or rub or are too restrictve (I loathe bras and will whip mine off at the earliest opportunity, if I bother wearing one at all. It isn’t a party trick, I’ve just reached the end of my toletance for a tight band constricting my ribcage!) I can’t sleep cwtched up with my husband, I need space to relax.

Yet, on the flip side there’s honesty, being straightforward, decisive, organised, punctual. I have special interests that are useful, making me well informed. My obsession with all things antenatal and birth related has led to friends asking for birthing advice. I have a slightly wicked and dark sense of humour based on saying exactly what I’m thinking (which is often what others are thinking too but are too polite to say). This is an area where I’ve learned when it is appropriate to say what I’m thinking and when it’s better to keep quiet or reframe things more subtly or politely. This is a learned behaviour though, and takes effort rather than being a natural instinct and so there are, inevitably, times I get it wrong. This is where having a diagnosis and being open about it is really helpful! What comes across as ‘devil may care’ or outrageous or blunt or just plain rude is actually autism! 

There are positive and negative sides to being autistic and, like everyone else, we thrive when given the opportunity to play to our strengths. So, if you need so someone to tell it as it is or you want advice about your birth plan, I’m your girl!

Exhaustion

I’ve been really quiet since returning to work after the summer holidays. Not because I’ve been too busy to post but due to the overwhelming exhaustion that accompanies going to work. And the work itself, while demanding and often stressful, is not exhausting. It’s the constant presence of others that saps all energy. Thinking and analysing constantly for eight or nine hours, not just about the work itself but about every interaction with the hundred plus people I come into contact with in one day. Working out the nuances of conversation and consciously combining the pragmatics with the semantics and then going over the interaction afterwards in my head, reliving it and second guessing my own interpretations and responses leaves me feeling pretty bloody knackered by home time! In the holidays I did little and holed up at home to reflect on my diagnosis and let it sink in. And I didn’t fall asleep once mid afternoon. But when we went away with friends, I needed to disappear for a break after a few hours, just to decompress.  People I’m very close to have messaged me after we have spent a day or evening together to check I was okay because I “went quiet”. Know this: if I can drift off and recharge right in front of you, that’s a very good thing! To allow me to rest and recover in the presence of others, without sneaking off to a quiet spot or leaving early is a gift only true friends can give. Even if it does freak you out a bit!

Creating an autism friendly environment.

You know now that I made my best friends while busy doing something else. I wasn’t trying. Whether you’re starting to get to know someone with Asperger’s or you want to connect with someone close to you who has the condition, I think it can help to be busy doing something else. For me it was Cycling. Little eye contact, plenty of conversational topics and an excuse to stop chatting for a while because you’re out if breath.  So I think it’s helpful to have something else to focus in during interactions. Maybe chat while you’re preparing a meal. Or perhaps play a board game. Just make sure you have the rule book to hand because your Aspie friend will expect them to be obeyed!😉

At home, we are working on making the living spaces as autism friendly as possible. Since we have some suspicions that others in the family may be on the spectrum this is doubly important! So, natural lighting is used as much as possible.  We’re trying to keep the main living areas as clear as possible from clutter, which is easier said than done with three kids, a crazy cat and elderly spaniel! Any Sylvanian families or Lego pieces on the floor when I come to clean end up in the Dyson! Only one source of background noise at a time and nothing during longer conversations is really important. So no more TV, tablets etc all going at once: it makes my heart race and my head feel explosive! In the longer term, I’m also planning on ditching the big sofa and getting at least one chair and footstool combo; the reason being, while I love a hug from my babies, constant leaning and snuggling overwhelms me and makes me feel trapped and jumpy. Then I’m not so nice to be around. A chair will allow me personal space but still accommodate cuddles! And a king size bed is an essential! 

How Cycling saved me.

I have mentioned before that life improved after I took up Cycling. I made many friends from casual mates I ride with occasionally to close friends I went out with more regularly, with whom I can go for a drink, a party, a BBQ. And I met my “besties”, that gaggle of girls that make life worth living even when the going gets really tough. I think part of the reason these friendships work is we have a shared interest and we got to know each other gradually, riding side by side (no eye contact necessary) and talked about our route, our bikes or our  bike related paraphernalia (small talk unnecessary). The other reason is that once someone’s seen you in full Lycra, sweaty, snotty and sometimes (often😉) crying, you can really just be yourself with them. My ‘Cycling family’ know about my Asperger’s and have done from pretty much the beginning. They accept me as I am, laugh at my rather dark humour and respond to my many quirks with a chuckle or an eye-roll, if they notice them at all. They make me feel safe. And I love them all. 

Maintaining Friendships.

Making friends is the easy part for me. Keeping them is the tough bit! At school I had friends and I wasn’t lonely. I’m still in touch casually, through social media, with some if the lovely people I was in school with. Some of us have kids of similar ages and those who stayed or came back to our home town will occasionally bump into one another in the pub or supermarket. But I always felt like I was on the periphery. I didn’t form those intimate bonds that characterise the friendships of teenage girls. I’m not in touch with anyone from my university days. I stayed at home, avoiding the trauma of living with strangers. The mythical “lifelong friendships” used to sell uni life never happened for me and I’m not sure I wanted them to. Things changed a couple of years ago when I started Cycling. Training for a charity event I made lots of new friends and over time I have even developed a proper, loving, sisterly friendship with a group of girls who have become very important to me. They’ve been with me as I moved towards diagnosis which gives us all a huge advantage over the friends I made earlier in life. I finally get it, and I know what I was missing. But no regrets, it’s all about living the best life you can with the resources you have!😀

Were you like it as a child?

I was asked this today. The answer is, “Of course I was.” Autism is organic. You don’t catch it; you’re born like it. The next question was, “Did you know you were different?”. That’s a lot harder to answer. It seems obvious to say but I knew everyone is different. But I had no idea that others were experiencing the world so very differently to me. Theory of Mind tells us we all assume others know what we know, experience things the way we do. I honestly didn’t compare my experiences to other people’s in any major way until I started on this road to diagnosis. Why would I? Learning that not everyone is more nervous than excited before a social event or that most people’s skill doesn’t crawl at the sight of certain textures was news to me. Big news! Most people don’t feel murderous when they’re jostled in a crowd; their hearts don’t race when the radio is too loud. Who knew? In my first year of school, aged five, I would snuggle against the warm glass panels that the classroom walls were made from (health and safety would have a field day nowadays) and enjoyed the solidify and heat while watching the other kids play. I didn’t care, I wasn’t sad, just different. So, was I like it as a child, abso-bloody-loutely. Did I know, no I didn’t. And I’m not sure I’d have wanted to, either!