The Week I Completely Rewired My Brain

shutterstock_145104232Just twelve days ago I was normal.

I suffered from anxiety disorder and confidence problems, and being organised was difficult and even painful, I got easily upset when someone disagreed with me, I had issues with noises, the telephone, smells, and surprises….
But otherwise, pretty normal.
In other words I was neurotypical (ish)

Or so I thought.

And then I caught Asperger’s Syndrome.

It all started when I wrote a blog post about anxiety. People on the autistic spectrum, or with children on the autistic spectrum, said they related to the piece and found it helpful. I didn’t know most of these people but seeing them share my blog post amongst themselves was nice – interesting and a little bit curious, but nice. You see I’ve always felt a sympathetic connection with people with Asperger’s Syndrome. I’ve always understood the feelings of being overwhelmed. I’ve never been on the autistic spectrum myself, you understand, I have just been shy and anxious so it’s different for me. But I saw a connection and felt a kind of outsider’s understanding.

Until the last few days, that is…

The same day that all this appreciation of my anxiety blog post was happening, a friend sent me a message. She was a little hesitant and chose her words carefully but she wanted to know if I’d thought about whether I could have Asperger’s Syndrome.

This is what happened in my head:

Firstly: Me? Asperger’s? No. I know about Asperger’s. I’ve studied it with the Open University. I don’t have all the problems associated with Asperger’s.

Then: Answer the question, though, Rachel. Have you thought about it? Well, yes, I have thought about it. It was brave of her to ask, so I won’t come across as insulted that someone thinks I’m autistic, I’ll just say, yes I have thought about it, and no I’m not autistic.

And then: Yes. I have thought about it, but how do I know? How do I really know? This person who sent me the message has known me for ten years. She’s read a lot of what I’ve written and sees how I interact with others; she says she’s been thinking of saying something to me for a long time. This isn’t a one off. She is also “a bit of an expert” on the subject. Let’s just get the book she recommended. Let’s see if we see any or enough similarities.

So I got the book and I read the book. And I spent some time alone in my own head for a day or two before I admitted to my husband what was going on.

When I spoke to Richard he looked doubtful and possibly a little irritated. But then he’s always accusing me of misreading his face. His reaction was definitely a little cagey and of someone unconvinced. It struck me perhaps he didn’t want a wife with autism. So I kept the rest of my thinking to myself. And I read another book.

And that’s when I started to get some symptoms of Asperger’s. And then some more. And then some more. Until I had full-blown Asperger’s Syndrome.

I withdrew for a few days – not completely, but I became a little trapped in my own thoughts, a little slower than usual and I allowed myself the very unusual treat of sitting on the sofa reading and ignoring everyone. I don’t usually allow myself such a luxury, but this was important.

The more convinced I became that I did indeed have Asperger’s afterall – that I am an “Aspie” – the more I wanted to talk about it with someone. But I didn’t know what to say or to whom. Eventually I emailed my mother and my sisters and introduced them to the idea. I’d say they were initially unconvinced and I was left wondering whether I should have kept my thoughts to myself. But to me this all felt massive and so, so important too: a life-changing discovery; a new way of looking at my life and myself and my past, a new set of challenges perhaps and maybe a new set of achievements now I was armed with all my new knowledge and insight.
I wanted to tell my family how I needed them to agree with me and support me but they hadn’t read what I had read, they had no idea what a success I had made of hiding my symptoms for years, and all the acting and performing I’d achieved in order to appear normal.

The mixed up feelings and emotional highs and lows brought on a lot of my symptoms: I had restless nights and struggled to get up and get moving every morning for a few days (even more than usual), I stopped doing yoga, took hours in the shower, a little habit I have of counting to ten, even though I don’t want to, played up big time, my stomach ached and I’d get to the end of the day feeling I’d achieved absolutely nothing. I felt physically shut off from everyone else, I felt totally alone in both a good and a bad way. It’s easing a bit now to a more usual level but I’ve been jiggling my jaw side to side a lot more than usual and playing rhythms with my teeth (Gawd, that would annoy me if someone else was doing it!). I’ve been super-emotional and sensitive and even more forgetful and overwhelmed by basic tasks than usual. I’ve felt small and young and upset revisiting painful memories of times when people misunderstood me. And while realising that it was probably due to Asperger’s is some comfort, the memories are still painful.

It’s all been a bit of a shock. I’ve been doing an awful lot of self-indulgent navel-gazing for over a week now. It’s been an enormous thing to take in. I’m not ashamed to say I have been completely obsessed and have made it a bit of a project. (I do love a project, though anyway!). I can’t stress enough how life-changing and significant this all feels to me.

I’ve spent my whole life coming up with excuses, reasons, past traumas, life experiences for every difficulty I have or have had fitting in to this world. I’ve put things down to shyness, to my creative personality. More recently I’ve simplified everything by just trying to accept that I’m a bit of a hermit – it’s no big deal. Only it is a big deal. It’s a very big deal indeed. It’s my whole life and I’m not who I thought I was. Well I am, but not in the way I thought I was.
I’m not just rubbish or lazy: I’m confused by what is expected of me.
I’m not just quick-tempered for no good reason: I’m overwhelmed by smells, lights and noises that don’t overwhelm other people.
I’m not just a rude, unsociable git: I actually can’t talk sometimes because my brain is wired differently from more sociable people’s brains.

So I’ve been reading. And reading and reading and reading: Online stuff, e-books, paperbacks; blogs and biographies by Aspie women, books by experts. Within all this information, I’m re-reading information that I read a few years ago and reading it from a different angle. I’m not reading: “People with Asperger’s might have this, that and the other trait or difficulty”, no, I’m reading: “You (I) might have this, that and the other trait or difficulty”.
With the advice of the friend who first got me think about this – all of those twelve long days ago when life was so different, I am learning to look for information specifically about women on the autistic spectrum. One of the reasons I decided I wasn’t an aspie all those years ago was because so much of the information was based on initial research done on boys. It’s different for girls though. Some of the men’s and boys’ traits don’t present in women and girls.

Now I know why it is that when things go wrong – however small – I can be inconsolable; why when I’ve chosen to wear a particular pair of socks and I can’t find them I feel like a supernatural force is trying to ruin my life; why when someone interrupts me mid-thought or mid-action I have a meltdown and can’t get back into what I was doing; why I am terrified of the telephone and think it sounds like someone screaming so loudly that I want to hold my hands over my ears and cry. I know now why I am always running lists in groups of 5 in head and repeating them rhythmically, why I’m always counting to ten to get a job done quickly, jiggling tunes with my teeth, and biting my lips and the inside of my face. I know why sometimes when I am out in public I’ll shove my hands into my pockets and freeze and forget to move or talk, why I’m always looking and listening for danger, why I find I want people to hurry up and finish when they’re talking to me, why I’m distracted by light and movement.
Why I can never ever, ever relax at all. Ever.

I don’t have all the typical traits of Asperger’s. For instance, I think I am very aware of other people’s feelings and I think about other people all the time. And I don’t have an obsession with a particular subject such trains or numbers or lists of facts (but I can obsess about something so much so that I burn the dinner and forget to get dressed for a while and then I’ll switch to obsessing about something else). And I believe I do understand social norms. I perhaps just don’t have the skills and I don’t enjoy them. Basically I choose to not get involved in social events. I also have a sense of humour and appreciate others with a good sense of humour and I thrive on sarcasm. I think it’s likely that a lot of “Aspies” will say they don’t match particular traits.

I’ve thought a lot about my childhood this week and how I used to play. I never enjoyed things that involved a large group. I didn’t feel that it was because I didn’t understand or that I was excluded, I simply didn’t enjoy group activities. I preferred small groups or one-to-one games. I didn’t see any point or any fun in charging up and down screaming. I’ve thought about how I could never bear to leave the house and go to school, and how I had stomach aches day after day for no apparent reason. I’ve thought about how for years everyone told me I was too quiet, should join in more. I want to go back and hug that little girl and tell her she can be quiet if she bloody well wants to; she doesn’t have to fit someone else’s idea of how to behave.

I’ve thought about traits I clearly do have and traits I believe I don’t have but in the middle I’ve noticed things I’ve been in denial about. For example: I am unreasonable when people disagree with me. I always have been too quick to feel that a different point of view is somehow offensive and insulting to me. I feel a physical anxiety as if that person has let me down somehow – especially if I know them and they know me. The intelligent, reasoning side of me understands wholeheartedly that everyone is different and sees things from a different perspective but it is perhaps the autistic side of me that will not and cannot cope with people not seeing how I must be right! I’ve read things, I’ve thought about things, I have good instincts, I have a great sense of justice. Therefore I must be right! Right? I’m now working on the premise that I may indeed be right and people may indeed be letting me down by having another point of view but they are not doing it deliberately (although it really feels like they are trying to upset me!) and it is not my problem. It’s a start. I’ll work on the rest…
Another thing I’ve been in denial about are my quirky little repetitive habits and ritualistic daily routines. Now I’m watching myself more closely I see how I line things up, how I do things in a particular order or a certain number of times. I looked at my jewellery box recently. I’m not big on jewellery – things rattling around or moving against my skin irritate me, but I do like stud earrings. I have compartmentalised my earrings into flowers, birds, insects, natural shapes and modern shapes. That’s probably not something everyone does. But it’s not something I’d analysed before.

Dissecting my regular day and observing myself as if from the outside isn’t easy, but I’m having a good go and while some of it is a little unsettling a lot of it is also amusing. I can see how a lot of what has become habitual is unnecessary and is slowing me down. I realise I am less comfortable with change than I like to think and I’ve been using routines for comfort. Like Liane Holliday Willey, the author of Pretending to be Normal: Living with Asperger’s Syndrome, I have had no trouble self-diagnosing myself and can see how I sit comfortably within the spectrum with my little collection of quirks and struggles.

The next thing to think about is whether I can put myself through the formality of an official diagnosis and all the anxiety that will cause me, or whether my self-diagnosis and conviction – and the conviction of those who know what they’re talking about, is enough. I suppose at 44 years old, one might question why I would need a diagnosis or why I have not been diagnosed before – All this time and no one picked up on it?! Maybe it’s all in my head? Well, perhaps it’s precisely because I am 44 that it hasn’t been picked up on. I’ve had a good long time to normalise my behaviours. None of my behaviours seem odd to me and I’ve not thought about them too deeply before. It’s only when I try to fit them to the status quo that some of them seem a bit problematic and many more I have learned to disguise.

As this looks like this is a family trait it may be helpful and useful to those I love for me to be formally diagnosed. And there will always be some for whom a self-diagnosis will not be enough – they will believe it’s all in my head or I’ve decided to give myself Asperger’s because it’s my latest obsession.
For now though: more reading and more coming to terms with everything.

It’s still very early days and I have a lot to discover, but I guess I’ll never know for sure what about me is unaffected by autism; what’s learned, what’s genetic, what’s neurotypical in my behaviour, and what is controlled or interrupted by untypical brain-wiring. And that doesn’t matter because I still want to be me, regular me living my life and having legitimate thoughts, feeling and opinions. But just thinking I can file some of my problems, my unproblematic quirks and some of the things that cause other people concern under “Asperger’s” is already making me unbelievably excited, and for that reason I’m glad I have the wiring a bit different in my brain and I’m going to stop pretending I don’t.

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14 thoughts on “The Week I Completely Rewired My Brain

  1. Wow Rachel, it sounds like you’ve had a huge amout to think about over the last couple of weeks. I can totally relate, when I realised myself as a sufferer of OCD so many things fell into place and although it felt pretty devastating it also felt exhilarating as so many things suddenly made sense. I still get scepticism from just about everyone even after counselling specifically aimed at my OCD as people seem to hate labels. You know best about you though and that’s so important to remember. Make sure you keep being kind to that quiet, bewildered kid inside you, she is a very special person xx

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  2. That is a fascinating and beautifully written post. I have a couple of Aspie friends, but still have a lot to learn. I found your description of how it feels when people disagree with you very useful. I love a good debate, and have always been rather dismissive of people who seem to be taking it personally; I will (do my best to) be much less dismissive in future. But most of all, I think it’s fairly incredible that you can go through such an intense experience in such a comparatively short time AND write about it so eloquently.

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    • Thanks, Helen. I felt quite ill writing it, but felt it important to get it all down while it was still so real/raw/other clichés 😉 I wondered if I wrote about it all later whether I would remember it differently.

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  3. Hello Rachel, a mutual friend of ours told me about this post and I’m delighted to have found you! Your experience sounds so very close to mine – particularly the parts where you describe your Asperger’s suddenly appearing all over the place: exactly the same thing happened to me – as I FINALLY started to understand what it was all about, and what it was all for (why I’d always hated hoovers, watched people’s mouths when they talked, been so very obsessive about things…). I was really shocked to find how much of me was autistic – there didn’t seem to be anything left. It’s a tricky thing, working this out in middle age – and I can also relate to your wondering what’s inherent, what’s learned, etc., and it messes with the mind a bit.
    I want to reassure you that while the journey is a long, often funny, sometimes painful, one, it gets easier – as you build confidence in the new you (the real you). Finding out who your real friends are can also be hard, but then you’ve found you real friends, and the rest can go… and get lost.
    I run a website you might find interesting (http://www.lifeonthespectrum.net); there’s a blog there too. Would love to see you over there.
    I was gutted when I was diagnosed, but when I texted my only aspie friend to tell her about the outcome, and she wrote back “welcome to the real world”. I extend that welcome to you too – there are lots of us, and you will fit right in here.

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  4. Thank you for sharing this – I recently have also come to a similar realisation, that I probably suffer from Asperger’s. Having analysed my childhood like you did, and when I look to understand how I actually feel and would behave, if you stripped back all of the layers of protection and “learned behaviours”, it seems very likely. There’s also the high likelihood that it runs in my family too.

    Like you, I don’t think I have some of the issues around understanding/empathising with others emotions, although I’d generally consider myself to be fairly emotionless – and anyone who observes me socially would consider me high-functioning and probably doubt how difficult I find being in those situations and even with holding conversations with anyone except the two people closest to me. Combined with my (over-inflated?!) sense of justice it’s taken a long time to learn to behave differently so that I can function semi-normally in society.

    I am attempting to seek a formal diagnosis – I suffer with depression, anxiety and a form of self-harming and before I seek treatment for any of these, I think that’s it important to understand and try to help any underlying issues. Given how frequently Asperger’s and things like depression/anxiety manifest themselves together, hopefully understanding the former will help the latter.

    Thank you again for sharing this – it’s very brave of you and it’s a massive help to people like myself who are on the same path. If there’s any books or other reading you’ve found useful, hopefully you’ll feel up to sharing the details, although I’ll try and find a couple of the ones you show in your photo.

    *hugs* and good luck to you.

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    • Hi, Azzy. Thanks so much for leaving your comments. It’s made everything seem less daunting coming across other Aspie-types online in the last few days.
      I found Pretending to Be Normal, and I Think I Might Be Autistic really useful and quick to read. I also found a short e-book called 9 Reasons Why You Should Consider Getting A Diagnosis of Asperger’s Syndrome useful. If you’re on Twitter and/or facebook The Girl With The Curly Hair is someone to follow (@curlyhairedalis on Twitter) and Rudy Simone who wrote Aspergirls has a great blog at Help 4 Aspergers: http://www.help4aspergers.com/pb/wp_a58d4f6a/wp_a58d4f6a.html
      Best of luck with your diagnosis and support. I hope it all goes well. Rx

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  5. Hi Rachel, I thought your name sounded familiar when a mutual friend of ours mentioned you but it wasn’t until I followed her link that I realised that I do know you! I also saw your tweet about this post this morning but didn’t have time to follow the link. This was a beautifully written and insightful post. You know where i ma if you need in-depth or private chats so feel free to message, DM or email me.

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  6. Hi Rachel,
    We have not been in touch for a while, I have had my own roller coaster to ride since moving down here. As always you write so eloquently. It’s extremely difficult to put your head above the parapet and say yes, I am different.
    Real friends and loved ones will take you and love no matter what, the rest do not matter. You can take a deep breath and let them go.
    Have a gentle hug from me. Gradually the roller coaster will not be so frantic, it will come to waves and to ripples.
    Remember I am only across the bay from you, not far at all.
    Always here to listen
    Lesley.

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  7. Good on you! If only I could get a friend of similar age to read your post and perhaps gain some insight into why his life hasn’t gone quite to plan. You have realised your small differences in a calm and collected way [at least you write about it that fashion ;-)] and I fear my friend may fly into another “attack of annoyance” if I recommend this post. I don’t think you need to get a formal diagnosis as you are living a good life, free of major disability. Perhaps you might consider explaining to people who react or comment about any of your behaviours, that you have a lot of similarities to people with Aspergers and that some “super-connections” in your brain can cause you to over-focus on some things and apparently forget to notice others. With a “matter-of-fact” tone of voice and a firm gaze I think you would be seen as very sensible and intelligent while telling them, convincing them that there is nothing “weird” and that your life is just as routine as theirs in most ways. Whatever you think of my opinion, I’m just putting it here for you to consider. Continue to live a satisfying life your way. I wish you all the best.

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