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.