**Disclaimer: I only write from my own experience, and don’t intend to write for anyone else’s experiences, around aspergers or anything else.**
The other day, I was sat in the car, thinking about how I’m not allowed “regular” interests any more, since I was diagnosed with aspergers. I can’t remember what prompted this thought. We were on holiday. But I was thinking about how different aspects of my personality are pathologised now, and that got me onto a post I’d seen recently on Facebook, about how difficult autistic children’s “obsessions” are for the child’s family to deal with.
I wonder if people know when they like and share these articles that they mean me.
I wonder if they see me, aged 8, and my interest in the Tudors; reading history books aimed at adults and desperately trying to share my interest with my teacher, who didn’t seem to want to listen. (I learnt young that people weren’t interested in what I had to say.)
I wonder if they see me, a teenager, and my interest in clothes; bullied at school and planning all the things I could wear differently to avoid the eye of my peers.
I wonder if they see me in my twenties, staying up late reading about birth; so rapt in birth stories that I would read… And then just another one… Until I realised it had become 2am.
I wonder if they think about how I feel, seeing articles talking about how difficult it is to live with me.
From a certain viewpoint, I do indeed get obsessions – that’s one word that can be used. The National Autistic society warns my children that they might not understand my “intense interest” in trains (eye roll, eye roll, so much eye roll).
I am weird, I am other, that’s the prevailing view of autism, that’s the loudest voice and the one that seems to get most likes and shares.
But from another point of view, I can have very focused thinking which can be an amazing advantage. I only realised I’m like this since realising I could be identified with aspergers. Realising this about myself has boosted my self esteem no end… As long as I remain in my own head enough and stay away from too much conversation “about” autism as an entity.
If I really want to do something, I can almost always find a way to do it. I learn about things very very quickly, I do this without realising. If something piques my interest, I’ll read all about it, and if it’s really really piqued my interest I’ll learn all there is to know about that subject. Sometimes this can be something that doesn’t have much daily relevance, like with the Tudors, but the older I get, the more useful it becomes.
I don’t mean to sound complacent or arrogant about this, but it really has been such a life transforming revelation to see this in myself after 30 years of seeing myself as stupid and not good enough, and I’m totally going to own it baby!
I used to have a birth phobia; it caused recurrent nightmares and led me to decide I didn’t want children. In my twenties, after I met my now-husband and started to want a child, I naturally started to research birth, and what started as a mild interest quickly became something I probably knew more about than some midwives (in theory not in practise!!). Doing all that reading totally eased my phobia; it gave me ways to prepare for birth practically, and it led to two challenging and differently empowering and wonderful birth experiences. Neither of my births were quick or straightforward, and I had to navigate different obstacles with both. All that research stored away inside my head helped me to know what was best for me, and to navigate those situations relatively easily.
When we did IVF, for months beforehand I read everything there was to know about the process and how to prepare for it. My life was IVF. Again, that stemmed from anxiety, and wanting to overcome the anxiety rather than be controlled by it. I remember my counsellor saying afterwards – I’d been seeing her a couple of years – the way you handled the IVF process impressed me so much, you just put your head down and got on with it, and you knew all of the steps so well. I was so surprised and touched that she thought this of me. I had always seen myself as such a flake – the person who failed at standardised learning, despite what teachers kept referring to as “potential”. I think that was the first time I started to take notice that I have this ability.
By far the biggest gift I have seen from this way of being has been in tackling my mental health. When I met my husband, I was 23 and having a massive breakdown. With his support, I was able to pause and look at the situation.
I decided I wanted to really understand what was going on, and to rehabilitate myself into society. I had not long walked with my ex through the loss of his parents to addiction, while also spending time with them at a rehab facility. I also through those situations got to know addicts who had overcome their addictions and who talked openly about their experiences. I watch things and learn, and decided I wanted to employ the tactics of acceptance and recovery I had seen through them to my mental health. Watching their deaths shocked me into realising that that could be my reality, too – I had also engaged in self injurious behaviour to cope with the pain underneath. That experience led me to realise that if we had children, they would carry the weight of my unprocessed pain.
I moved to live with Pete, and decided not to go back to work when my sick note ran out. I set about to create a therapeutic lifestyle and to allow myself to feel all the repressed pain I was carrying around – to cry all the hurt locked away – believing that suppressing it was causing my depression. That was the moment I started to get a glimpse that when I need to tackle something, I’m strong minded, able to see new and creative solutions to problems, and have the willpower to push them through.
In creating this therapeutic lifestyle, which is always a work in progress, I have discovered ways I naturally handle change and process trauma. When I was allowing my childhood trauma to come up, I would watch seemingly endless episodes of Criminal Minds, really late into the night. Years later, recovering from a C section, I held my newborn daughter and watched infinite back to back Say Yes to the Dress. Entering even a pretend world that is predictable, formulaic, and contains familiar characters is comforting when things around me are unsettled; it helps me cope with my own transitions.
I function best when I allow these things to flow naturally and do not attempt to set limits around them (as parents are often encouraged to do for their autistic children). I move on from an interest when the need has been fulfilled. Particularly when I was recovering from my breakdown, I found it very healing to allow myself whatever I needed – it felt like reclaiming my needs and my personality.
All my life I’ve relied upon rituals. These encompass everything from the benign – washing my hair and shaving my legs on alternate days – to the cancerous, at one stage counting and restricting my food intake while also pursuing a punishing exercise routine.
In my young adult life, I was convinced that the right routine would bring me the stability and ability to cope I so longed for. If I couldn’t fulfill my expectations – if I was injured and couldn’t exercise, for example – my whole life would fall apart. However something I’ve noticed is that the more and more my lifestyle encompasses my needs, the healthier and more balanced my routines are, and the more adaptable I am.
Many people have a need for routines, and my husband does too, something he accepts in himself without judgement. That has helped me a lot and we complement each other in that way.
Having my diagnosis gave me the freedom to realise that these ways of thinking will never leave, they are an important part of me. As I have grown to know and love myself through the years I’ve been working on my mental health, the changes I’ve seen in my need for routine have echoed the positive changes in my broader patterns of thinking.
I do still experience struggles with my way of thinking. It’s only since my aspergers diagnosis that I’ve realised I could be identified with a form of OCD called “Pure O”. I struggle with repetitive intrusive thoughts and imagery of a devastating apocalyptic future, and within that images of horrendous violent things happening to me and those I love. It started when I was 12 after my dad (who worked in the field) started talking to me about climate change. After that I spent my teens feeling suicidal with no reprieve from my thoughts, because I had no tools for tackling them. They then came back three years ago, triggered by the responsibility of becoming a parent.
It was actually due to the return of these thoughts that I ended up realising I have aspergers, and after I realised about my aspergers, I thought, I can sort this fear out, because I am made with the strength of mind to do it. I have examined my fears inside and out, I’ve sat with them and learnt from them, and my ability to focus has helped with that. It is getting better, a LOT better. I’m no longer suicidal when I think about the challenges the world faces, which feels like an amazing achievement. It’s probably the thing I’m proudest of, because the thing that has changed isn’t me no longer seeing the world as hurting and broken – I still see it as I did. I’m still concerned about climate change (to put it mildly!) and a lot of other things beside. But I have come to respond to those fears differently; I don’t get the intrusive thoughts any more, and when I do I know what to do with them, and that’s very freeing indeed.
The other thing I struggle with is that, because I focus hard, I can’t really focus on more than one thing at once. My focus isn’t directed, it goes unbidden to what interests it, and I can’t multitask, like apparently women do so well (eye roll). It’s a real pain when it comes to running a house, preparing food, etc. But something I find is that since I appreciate what my brain CAN do, I worry much less about what it can’t.
Overall I am grateful for the way my brain is made. It’s imperfect, but whose isn’t? I’m learning to understand and appreciate the way my brain works all the time. Since my diagnosis, I look back over my recovery, and realise that what I have been doing all these years is learning to accommodate and accept my autistic needs… And that as I’ve learnt to do that, my brain has been increasingly able to do the things it is good at. I feel beyond privileged to live in this particular unique time and place which has granted me the opportunity to learn to love and understand myself.
I wonder whether, if I hadn’t had to use my focus to reclaim my mental health, I might have spent my twenties using it to study for a PhD, set up a charity, or run marathons. I speak about my diagnosis for those people diagnosed with autism and aspergers growing up now; adding my voice to the conversation about how to support them in the hopes that they will be able to use their brains in ways I wasn’t. Because you know what? The world needs brains that can multitask and uphold the fabric of society, but it also needs brains that have a good sense of detail, are able to focus entirely on a project, and are willing to challenge convention.
However your brain works, I think it’s important, and you deserve to use it to the best of it’s ability, for the benefit of the world. If you can’t see that right now, please just trust me on this, and hold on for a time when you can. You have a good purpose.
Despite everything I’ve been through, honestly? Even with everything, I wouldn’t change a single thing about my journey, because through it I’ve been able to find such happiness. The challenges and the dark times make the sunshine and the love of my little family so much sweeter. And I’ve faced enough challenges now to know, if I hold on long enough, the sunshine always finds a way back.
This is my favourite article on autistic “obsessions”. It’s awesome, read it
This is a page of links to useful resources about aspergers in women, with a table of typical traits.
If you relate personally to anything I’ve written, you might find it helpful to learn about the “Highly Sensitive Person” – here is a good place to start.