So, as you know, I’ve not been feeling too great about myself recently. I happened to stumble across this, which I wrote three years ago, and it made me feel a whole lot better. Reminded me that I do have a purpose. I didn’t end up publishing these words at the time, I wrote something else instead, so I thought I’d put this out there now:
“I’ve not been around in a little while, had a something going on 😉 See, a few months ago I realised I’m autistic, and then recently I was formally assessed and received a diagnosis of Asperger’s (a form of autism).
I’ve thought long and hard about posting about it; I know I may come to regret it down the road. But when I look at the world, and all the sadness and brokenness, I feel that speaking up is so small really, a little something I can give so that possibly someone somewhere might feel less alone. And that’s what I want to do with this knowledge, to wear it publicly, to help fight shame and stigma. Maybe sharing this could affect future job prospects, but, I don’t want to live in that world, and in order to move on from discrimination people like me have to speak up.
I started to realise that something was still unaccounted for with my mental health when my other half started working in Birmingham and I couldn’t handle the change. During the whole period over our move, I felt like the world was spinning around me, and there were days I couldn’t get out of bed or interact even with our son, but i knew I wasn’t ‘depressed’. Although that was all I could really think of to call it, it wasn’t like depression I had experienced before. And then I came upon female autism and I knew it explained my whole life, and, I started to cry for having spent a life not knowing.
When I was a child girls weren’t diagnosed with autism. Instead, autistic women are often diagnosed with mental illnesses in adulthood, many never understanding the root of the issue. I went through school isolated and miserable, often taking days off because I couldn’t face going in, not understanding how I got things so wrong socially. My teachers would say to my parents, ‘she is not meeting her potential’, but i couldn’t explain to anyone why that was. I cried myself to sleep so often, and my overriding teenage memory is of loneliness and shame. I say this not because I to play the victim or gain sympathy, but because I want to paint an accurate picture of the impacts of misunderstanding. It’s so important that we talk about the affects of missing autism and other childhood issues, because right now, kids are dying – physically, emotionally, spiritually – for feeling ashamed and misunderstood.
But now – now I know – and the thing I can do is to speak up, to give my voice to ending loneliness and shame. Too many teenagers feel isolated and speechless, too many people have no one to reach out to. I appreciate all the people who have been there and helped me not feel isolated – all of you. I’m grateful for each and every one of you that has known about this and accepted me still; and also for all of you who don’t know and accept me just as I am. I appreciate you all very much, much more than I can say. There aren’t words enough to express.
I totally, 100%, believe that I was created in this image. My autism is not a flaw, it’s not a shame, it doesn’t make me less than. Yes it makes me different – but which one of us doesn’t have something that makes us different? I love some aspects of my personality, while others frustrate no end. But even with those things, I’d have it no other way. I was meant to be, just like this. This is no vaccination injury, this is no disability, this is how I was meant to be, from before I was born – and there’s a place for me and others like me in the world. We are important, and the world needs us.
So this is me, being autistic, and I’ll be autistic for the rest of my life, and I am so very ok with that. And whoever you are – I will celebrate and fight for your right to be, just as you are. You are intended. You are made in the image of beauty. There’s a place for you, and if it doesn’t feel like there is, that just means the world needs to work harder at providing it – because it *is* there, there’s a space right with your name on. And it’s important to the world that you are here, just as you are. We need you.”
*Trigger warning – Description of violent intrusive thoughts in second to last paragraph*
This summer I have been taking part in the #TakeTheMaskOff hashtag campaign – a campaign through which autistic people are sharing our experiences of masking. Masking, for those not initiated into autistic culture, for autistics means covering up different parts of ourselves that we feel or learn are socially unacceptable. Each week has a different topic and this week the topic is the effect masking has on mental health. You can check out my previous entries on my Facebook page here, and a more diverse collection of entries can be found on The Autistic Advocate Facebook page, here.
I have felt daunted to address this week’s topic, because masking has had such a huge effect on my mental health… No, not my “mental health”, that undermines it… Rather, masking has completely changed the course of my life from what it could have been. Needing to mask, and then deciding not to mask (before I knew I am autistic and that that is what it is called), and then actually putting that into practice (a process that is much longer and more layered than I ever anticipated!) – how can I sum up the majority of a thirty three year lifespan in one piece of writing? So I’m daunted, going into this, but I’ll try, I’ll try to write about what this means to me. And I’ll try to be really open and honest about the impacts, and that will mean sharing some stuff I feel very vulnerable about, that I am still working on. It’s easier to share the stuff that’s processed, but the honest truth is that at the moment I am dealing with something mental health wise that shocks me by displaying so vividly how absolutely I believe that being myself is dangerous. And that issue is something that’s completely ongoing, not fixed, and at the moment I honestly feel a bit despondent about it ever being fixed. So to be honest about that issue is quite a scary concept.
But this is also a story of triumph, to me, because I currently feel more able to be myself – and accepted for myself, which is the crucial part really – than I ever have done before, and it’s something I’ve worked very, very hard at, but it’s also something I’ve largely been able to do because of my privileges as a reasonably wealthy person. (I don’t mean wealthy as in big house and fancy car, but wealthy as in being able to put down a deposit on a three bed semi and forego working for the sake of my health.) I am privileged because I was born into a family with some money, and that needs naming. As a person with privilege, I feel it is my responsibility and honour to share my story; it gives me freedom to share openly.
But I’ll start at the beginning. Ish. I can’t remember when I started to feel that I am in myself unacceptable. I never remember feeling good about myself. From right when I was very little, I wished that noise wasn’t so painful and frightening for me, that food didn’t scare me, that I could just fit in and be easy.
As I got older and learnt to read, I started to learn voraciously. The first topic of interest that stands out in my memory is the Tudors and Stuart era. Aged about 8, I read absolutely everything I could get my hands on about it, including adult history books. When I was in Year Four at school, we studied the Tudors, and I was SO excited about it. Unfortunately it was then that I learnt that the education system is not set up to support women with my kind of brain, as my teacher – hard as she obviously tried to support me – clearly had no idea what to do with this little girl who knew a great deal more about the Tudors than she did. Instead of enjoying the experience and being able to share my knowledge, I ended up feeling ashamed that I knew so much more about it than those around me, and that I was making my teacher’s life unnecessarily hard.
About this time my parents separated. Shortly afterwards we moved, and I started a new school at the beginning of Year Six. That was my first experience of having to transfer cultures, as it were, and the way the children behaved at my new school completely baffled me. The dynamics and social expectations demanded of me were very different to my previous school. I couldn’t make head or tail of it, and was subsequently excluded and picked on, very aware that I was the lowest in the class pecking order. So I started seeking to stay home by inventing physical illnesses. I didn’t know how to express it, or even understand it at the time, but I was indeed very poorly, my anxiety was so great and sense of self worth so low that I couldn’t focus, learn or sleep. However, I thought I was lying about needing time off school, and that shame and identity as a “liar” is something that has haunted me ever since.
I started to become very anxious about speaking up in class and find I was unable to do so. At school, I didn’t have any way to express my positives – my instinctive learning ability, for example – and my learning experience became centred around feeling that I don’t fit in, and desperately wishing I could. As a girl, there was not a place, socially, for me to be myself. It is not OK for little girls to be too clever. Just be clever enough, in the right ways, to get the grades adults want. And no more than that.
I went to secondary school and there felt lost in a crowd, overwhelmed by chaos and noise. I didn’t matter to anyone there, my teachers changed so often throughout the day that no strong links could develop with them in the way they did in primary. My problems speaking up in class – answering questions and so on – became worse as school went on. I would know the answer to things – easily, as the work was, in all honesty, often completely unchallenging – but I would be unable to express it verbally, and flush very red in the process, drawing more attention. Teachers would complain that I could chat to my friends in class but never contributed to the lesson, I felt like such a failure.
I started, during my time at secondary school, to knowingly model how I behaved and dressed on others. I would study the popular girls for hours, wondering how they did it. How did they all know how to do their hair? How did they know the right things to wear? To be interested in? However, during my time at school, I wasn’t very good at masking (except by remaining quiet), and I felt very ostracised.
I then went to a boarding school at 16, it was a complete disaster. With the support of my dad, I decided to leave and go and live with my Grandad in Cambridge. But we were at cross purposes about what I should do there. Dad expected me to study. But as far as I was concerned, I was well aware that I was academically clever, and it wasn’t something I wanted to encourage at all. In fact the complete opposite. From my point of view, I went to Cambridge to learn how to be social, how to fit in.
It was the first time in my life that I’d really been free to choose who I am – what I wore, what I did, my interests – and Grandad was great at creating that space to explore. At home, I had felt enormous pressure to be interested in culture, politics, and my formal education – all things that I wanted to distance myself from, in my desire to fit in. For my safety. I used to lie awake at night worrying about my inability to relate to others and particularly to the opposite sex, about never finding anyone to love me, about how I would survive as an adult without a support system. I didn’t know how to live, how to keep myself alive. It was imperative to my survival at that time that I learnt to mask and fit in.
And I was very good at masking, at becoming a social butterfly, once I put my mind to it and had the freedom to pursue the self expression I needed. I would angst a great deal over clothes, hair, makeup, music – because I had to choose a persona that reflected what I perceived to be the norm, not my own tastes. But I didn’t even know what my tastes were by that point. I didn’t know anything positive about myself. I expended all my energy in creating this person who spoke differently than came naturally to me, who thought about different things than I do, who did different things that I would. It was very hard, and I put myself in a lot of risky situations, through trying to be this party girl. I struggled to be alone for my whole seven years living in Cambridge, I couldn’t be with my self, with my thoughts. There was too much to run away from.
But, in a lot of ways, my persona wasn’t a lie. Leaving home enabled me to explore parts of myself that had been previously suppressed. I am in fact a person with immense social interest, and I have a strong need for social acceptance – but I’d never had the confidence to explore that. Pretending to be someone else, I learnt skills and grew in confidence in a way that stays with me, and those are experiences I wouldn’t have had otherwise. I found I loved dancing, and feeling part of a community – a network. The love of community and desire to build my life around it is something that’s stayed with me.
For the first time in my life, when I was being this other person, I could have fun. I could be lighthearted. I had grown up surrounded by serious subjects at home, state of the world, is-the-apocalypse-imminent-type-stuff. I needed to let my hair down. To explore the wider world.
Living in Cambridge remains some of my fondest, happiest memories, a time of life when I look back on feeling very alive. I felt loved. People actively sought me out for the first time and it was very healing. I learnt about this part of me that is a leader, that fosters community, that builds deep connections. A person who loves deeply and passionately.
But at the same time, I was exhausted all the time, and terrified. I didn’t know anything different to feeling terrified all the time, so I never questioned that, never realised it was abnormal. The terror was literally that of not feeling sure of my survival. Of being exposed and my life falling apart. Never being able to look ahead, to build for a future. It was day to day, in the moment living. And because I was divorced from the intense, thoughtful, questioning, academic learner part of myself, I couldn’t study. I didn’t understand how to study, because I didn’t have my own voice with which to write essays, and there was no guide to copy.
When I did start a serious relationship, something I had desperately wanted, I began to have to face my problems. He was an intense, thoughtful person, and it made me feel deeply uncomfortable to be with him. I loved him, but he exposed too much of myself. I didn’t look normal enough with him. He made me cringe by being himself. But I couldn’t break up with him because of that. I found it very hard to reconcile. I look back and am ashamed of myself, that I felt that way, that I was so completely self centred. I wasn’t a “nice” person, during this time of my life.
Then we, as a couple, had a series of traumatic events that shook us deeply. I was ill, I believe now it was exhaustion and physical overload from masking in the form of ME, but at the time, doctors were concerned I might have a brain tumour, or multiple sclerosis. That was the extent the exhaustion had got to. I had to have an MRI, it was terrifying. We then lost my granny shortly afterwards, and then his parents one after the other in quick succession. And I started to learn about my infertility conditions (a balanced translocation and PCOS). I possibly had a very early miscarriage. All together, it was far too much for the shaky foundation I lived on. I needed mental resources to get through those things that I didn’t have.
So basically, life started to fall apart completely. My sanity was shot. I began imagining things that weren’t there, living in a state of intense paranoia and a period of mild psychosis. I developed an eating and exercise disorder to try and maintain a semblance of control. I started to have some pretty epic meltdowns, losing my temper without warning, and the scary thing was, it felt good, like something I’d never allowed to come out. I became obsessed with having throat cancer. I couldn’t continue uni, so I left and started a job as a teaching assistant – which was a wonderful experience, actually, but I couldn’t maintain the input needed and was having constant crashes. I started to cheat on my other half, and behave in a very unsafe way – looking for some meaning, some sense of self.
At that point, I left my partner, and shortly afterwards I met my now-husband. Three months after we met, we went on holiday, and when we got back, I couldn’t get out of bed, I couldn’t stop crying. I was 23.
I wouldn’t learn I am autistic for another 7 years, but it was at that point that the journey back to my self started. At that moment I decided to stop living as someone else, and embrace myself, whoever that was. I had lost touch with my innermost being; with any idea of what my true hopes, dreams, likes and dislikes are. I remember a few months after my breakdown, sitting down to a table, trying to think of things I remembered about myself from when I had been a child. And I remembered I liked to write. So I got out a pen, and paper. And I just sat there. With this pen and the blank page. I didn’t have a single word to write on it. And to me, that encapsulates how completely I had lost myself. Because I am a writer – that’s how I express myself, it’s my first language. It comes much more naturally than speaking. To not be able to write… It was truly having no idea who I am.
But over the years since, this new (old) self is tentatively emerging. Something that is a combination of all the various parts of me. Something that is true, and unique, and authentic. It’s slow, and it’s painful, and it’s taken much, much longer than I expected. But it’s been the best thing I’ve ever done. Without this work, I could only have shown my children that they are unable to be themselves. Hopefully what I’ve done has meant I am able to support them and help them grow in ways I would never have been able to before. It often concerns me, to think what would have become of me, had I not met my husband. Where would I be, now? Would I be, now? If I had become a parent, what would have become of my children? For all the time and the pain it has cost me, finding myself is the best, the only thing I could have done. It’s the most wonderful gift.
But what I mentioned earlier – about the mental health issues I live with? Since I first created a platform for sharing my writing, a year ago now, first very tentatively and recently with a self assurance I didn’t know possible, I have started to experience intrusive thoughts that I will be burnt alive. Actually, to be precise, it’s like a voice within my thoughts, part of my thoughts, that says “they will torture you and burn you alive”. It started when my period returned after my daughter was born, and no doubt there’s a strong hormonal element. However, to share my writing is unmasking to the most painful degree, for me. It is what I am made for but it is also my most vulnerable area. To put my writing out there is like exposing my most vulnerable, inner self. And from the intrusive thoughts, I can only assume that I fundamentally feel that being myself is very dangerous. Very unsafe. Hormones or no hormones, I would not be living with these thoughts if there was not a solid psychological basis of experience for them to grow upon.
So for me, in this past year, I have unmasked to an extent I didn’t know possible. It has brought great rewards – I am more myself in all areas of my life now. I gave a little sermon at church. Life is pretty amazing really. But it comes with this huge cost. And this huge cost is the constant, wearing, worrying fear that I will suffer horribly, just for being who I am. That that is the only possible outcome. It is so ingrained, I try to challenge and shift this belief all the time, but for the time being, it’s not going anywhere. And it’s taking me to places in my memory I’d rather not go, buried far, far deep in my past. Because this story of mine isn’t just a story of autism. It’s a story of autism, and all the other traumatic life events that autistic people are more at risk for – because as children we are sometimes seen as difficult, as challenging, as less than human. And it’s a story of the ways those experiences change us. Of the feeling of safety they take away.
I feel very emotional tonight. It is my last day of being 32. This is long and pretty much my life story so bear with me, I couldn’t really fit 33 years on a meme 😂🙈
Three years ago, on my 30th birthday, I realised I am autistic. Tomorrow is not just my birthday but it is also my autie-versary.
Life felt very scary and very challenging for a long time. I never felt safe, even as a very little girl. I started to school refuse age about 8, around the time my parents separated. I would make up illnesses so I didn’t have to go. Later, I started stealing. I have always struggled with selective mutism and school would say, Kitty is bright, but she never contributes in class (she chats to her friends though…). It was always my problem to work harder on. No-one knew that the environment was too much for me. That I was already working really very hard on doing the best I could. They didn’t know that I have attention difficulties.
My parents were into Friends of the Earth when I was little. That was fun. We planted trees and collected money. After my parents split up my dad started working in climate change and researching sustainable development. He would talk to me about his catastrophic fears for the future. About ways my brother and I could prepare for an apocalypse. It was very hard. My OCD got out of control. The world already felt very scary. I felt totally responsible for fixing climate change. I thought, if I die, I will go to hell for not having fixed this, so I never tried to kill myself. It was better to be alive and terrified than in hell.
I was diagnosed with two different infertility conditions very young – a balanced translocation and polycystic ovary syndrome. The future looked so bleak. I probably shouldn’t have children because climate change, but even if I did want them, it seemed insurmountably hard. I was bullied at school, and I couldn’t see that I would ever find anyone to love me and spend my life with anyway. Never pictured a wedding.
I left home young and drank and partied my way through life. Tried to stay out of my head as much as possible to not think about the climate and everything else. Because what could I do about it? I didn’t know I was depressed, autistic, have OCD and probably ADHD. I didn’t know I have attachment difficulties. I just thought the world was very very scary and I was failing, badly.
When I was 21 I became ill and was tested for a brain tumour. It was very scary and because I was ill, I couldn’t run away any more. I told God I would start living my life for something, that I didn’t want to run away any more. And I had a vision of a little boy. Two years later I met Pete, and he found out we could be funded for IVF with PGD. And that’s what we did, and almost five years ago, my son was born. I was 28.
My 20s had been hard, too – but things were improving. I had a breakdown at 23 and I lost some close friends and took it very hard. It lasted a few years and it forced me to confront my life. I started working on my mental health at that point – really working on it, with everything I had. I knew it was my only option if I wanted different from my life. I had dropped out of uni already. I had to opt out of having a career in order to choose my mental health.
Until we had our son, it was hard to overcome that legacy of things not going right. I was just a dropout. But something I did have was Pete. And Pete really believed in me. He was happy to support me to get better. And he believed not only that I would get better but also that we would have a baby. He is the antidote to me. Life has been pretty good to Pete. He is a resilient person and he has been able to overcome challenges. And he has given me that gift, and he gives me that, all the time. That security. That faith. That hope.
I feel like that’s not spoken about enough in regards to mental health. Yes, people can work on their mental health. But often, at least in my experiences, breakthroughs are needed in life as well. The story that person is living might need to change. Positive thinking can’t change a life where everything has hurt, all by itself. And as a society, we could do more to create positive change in people’s lives.
Sam changed *EVERYTHING* when he came along. God had trusted me enough to give me a child. I had a job to do. And so much joy and energy came into my life with Sam. A new fight I hadn’t had before. He is hands down the best thing that has ever happened to me. He was so unexpected, because after the life I’d had, I just expected IVF would fail too. But it didn’t. It worked first time. And almost five years later, here he is. My baby. My miracle.
When Sam was one, my mental health collapsed. Completely. I was suicidal and couldn’t get through the day. I didn’t know how to take care of this little boy. I had no one to look after me. Pete had to work, so we had income.
Looking back, a lot of changes happened just about that time. My husband started a new job. We put our house on the market to move here. Searched for a new house. There was also the ebola epidemic and the conflict in Syria taking off. And those triggered all those nightmare fears I had about climate change and the future. I was living back in my teenage head again.
My mental health also took a new battering right when my daughter turned one, but there were no other life changes accompanying, so, I suspect there is unresolved trauma from being that age myself. It seems strange it started bang on one both times.
We moved here. And I was trying to hold it together because I didn’t know what else to do, but I could barely get through the day for feeling so awful, and I couldn’t look after my son, and I knew I couldn’t, and I’d wanted him so very much, that the guilt was immense. He started to struggle with behaviour and I blamed myself and felt horrendous.
And then. And then.
I turned 30. A year after my crisis started. He was just about to turn 2. And just before my 30th birthday, someone asked about their husband possibly being autistic, in a Facebook group I admined. And I related to more of the traits than I realised.
On my 30th, my whole birth family forgot my birthday (apart from my grandad). I felt bereft. As I cried, something said, look up female aspergers. And I did, and my whole life fell into place. Here was an explanation for why I felt so rejected. For all my struggles. And here was an explanation too, that my family didn’t hate me. Maybe they just struggled with their working memories, too.
And actually, you know what, I couldn’t care less whether anyone forgets my birthday since that day. And I no longer stress myself out trying to remember birthdays. Because that day I realised, we’re all different, we all have different capabilities and we all express love in different ways. And that’s OK. People aren’t required to show me love in the way I want or expect.
Realising I am autistic is hands down the best 30th birthday present I could ever have asked for. The last three years have been crazy. I was diagnosed eight months later and fell pregnant with my daughter (also IVF) in the same week. Another baby that took first time. A diagnosis that was very easy to get. Things felt like they were falling into place for the first time in my life, and 2.5 years later, they still do. And it scares me. I don’t know what to make of this life that is so different. But I wouldn’t have it any other way, and I am so grateful, every day, to have my two babies and my Pete and our dog and to live in a place that we like.
The first year after I realised I’m autistic continued to be really challenging. I was still struggling with feeling suicidal about the state of the world, with catastrophic mood swings, with basic care for my son. He was still having a hard time too. And on top of that I was overwhelmed by this realisation that I autistic. All the “I am broken and less than” internalised ableism from our cultural narrative around autism hit me hard. I assumed life would never get better. That the things I struggled with – isolation, crippling fear – might just be part of me.
But autism brought me something I could never have foreseen. It has given me something to fight with. Climate change is huge and it needs all of humanity to work together to fix it. And that can feel overwhelming. It’s a pretty vague beast to fight and the ways to overcome it are not clear. But autism – autism is something I can make a difference in. Because with autism, comes the autism community. There is a community that comes together around people with autism and we are all united in the same cause, and by sharing my story along with the other brave people who do, I can make a difference. I can make a difference. And autism took me from feeling like a failed person, to a person who had persevered through unrecognised and unsupported differences in my brain. I can’t tell you the difference not feeling like a failure makes to my life.
And along with my autism, I learnt about all the things I am good at. I always felt like I wasn’t good at things. But I learnt about hyperfocus and hyperlexia and pattern recognition and all these things I do WITHOUT EVEN REALISING. I do have things I am good at. And I never realised that before. And it’s led to me sharing my writing, and even being confident enough to give a little sermon in church. And actually, even being confident enough to be part of a church community is something that autism has brought me. I was always too scared to invest in a church community before. And I didn’t know what church would fit me. Once I realised I’m autistic, I found it easier to spot a church that would suit us as a family, to find our niche. I realised I didn’t have to make myself fit a box I could never fit. It was OK just to be me, and expect the world to work around that.
Something else autism has brought me is a hope in the face of climate change. For a start, I started to throw myself into climate activism, because I realised that with my particular talents, that’s a pretty good niche for me. (Actually, I’ve started to think that empowering autistic people might be the fix we need for climate change. If you want a tough problem solved, look to your Neurodivergent out-of-the-box thinkers.) And I also realised that engaging with other people to think about climate change felt a lot better than sitting by myself and worrying about it. It’s a good socialising technique for me, as well – to find ways to meet people in structured ways and with similar interests.
The other way it’s brought me hope is this. When I was a teenager, I saw myself living a lonely, unloved life, and dying very young and alone as society collapsed around me. I thought I would have no children or stability. But actually, adulthood has brought me an amazing man, and two amazing amazing children. It has brought me joy, and meaning. And I could never, ever have foreseen meeting Pete (it’s a story for another day but I’d just walked away from the person I thought was the love of my life two months before I met Pete). I could never have foreseen IVF PGD – that didn’t exist when I was a teenager. I could never have foreseen TWO babies when I shouldn’t really have been able to have one. I could never have foreseen autism coming into my life.
And you know, it makes me think. We live in an amazing world, full of possibility. We never know what’s just around the corner. Yes, it is full of sorrow too. But the things I have seen in my life, they honestly make the idea of a new creation seem like a not so crazy concept. Who knows what’s happening in the future, and I’ve thought about it today more than I do most days, as I’ve sat and listened to various concerned clever people – Christians, a Quaker and a Muslim – all working hard to bring hope and combat climate change. People who really know what we’re up against. I know how very urgent and seemingly out of control the situation is. And I’ve also experienced the most unexpected of hope in my life. It seems crazy to say, but if it can happen to me, why not to the world?
Love is at work in the most unexpected of ways. And that is something I celebrate tonight, on the eve of my autie-versary.
And these are my unedited, very raw thoughts. And as much of my life story as I could fit into a blog post.
Random off the cuff thoughts tonight… And I am writing this straight to this page, no editing, as I’m shattered and feeling brave (or stupid 😜)…
So earlier I was having a pretend conversation in my head with a friend (as we all know I do all the time, #actuallyautistic) about food. And in this internal dialogue I said to her, I love food now, and the stronger tasting the better. But as a child I used to be really fussy.
And then something inside clicked and I thought HOLD ON A MINUTE.
And I reworded it in my head.
*As a child I was unable to eat a lot of things.*
And just like that, a whole load of shame dropped off.
It is NOT fussiness if you stick to foods that do not make you gag or vomit.
It is NOT fussiness to fight for dignity at the dinner table.
It is utter, complete sanity.
To force yourself to eat food that makes you feel sick is madness.
And yet so many of us experience this as normality in childhood.
And it subtly chipped away at my understanding of the world. At my voice. At my perception of my sanity and worth.
When the reality I knew to be true was denied.
Food shame has had a strong hold on me. It has caused huge problems in my relationship, as I have been intolerant, unable to bear that which was not tolerated in me.
I was talking with a friend recently and they were saying they feel weak and pathetic for having mental health problems. That services should be reserved for people with ‘real’ problems. This person has a happy family and ‘should’ cope.
I got it right away. Those thoughts have long been a companion of mine.
Back when I was a teenager I would look at people diagnosed with depression with such envy, unaware that I was also depressed.
They were ill and I was stupid.
It was the same with organisation.
I was weak and lazy. That’s why I couldn’t get my uni work in on time.
When I started to get diagnosed – first with mental illnesses – it took me years to believe that I really truly needed help and wasn’t just wasting everybody’s time and money.
After my son was born I wondered, how can other mums leave the house so easily while I find just packing his nappy bag so overwhelming?
My autism diagnosis was the thing that started to turn that around. I began to realise that it is the way society has treated me that has been broken. It has nothing to do with my brain. My brain is perfectly fine.
And I began to realise that there are strengths that come with the way I am, and it benefits everyone if I can learn to access those more than I am governed by the weaknesses.
In getting help I’m not a burden, I’m enabling the world.
Every single label I have found since is another nail in that coffin of never good enough.
Every single label I collect along the way is a lamp that lights the path ahead.
Worthy of help. Bent but not broken.
Today I saw a sign on my travels; “Labels – for jars not people.”
And I smiled and thought, don’t you know what they can mean?
Something I have been thinking a lot about recently is why the rates of mental illness are rising (as evidenced by rising suicide rates).
We live in a time that is prosperous, so why are people increasingly killing themselves? What is going wrong?
And then I thought about children.
As a parent, I have the opportunity to see the education system from a different angle than I did as a child. And what I see is something like this.
From birth, from the gifting of the red book (that we get with a new baby here in the UK), your baby has certain duties to perform and certain pressures to fulfil. S/he must develop right. And you, as a parent, are responsible for tracking that, for making sure they fulfil their potential, and if for any reason they don’t succeed, the fallout will be on you. You will have failed them.
These children, who have been protected and fretted over, then enter school, and at school, yet again, the pressure is on them to fulfil someone else’s agenda. To meet the school’s target so the school doesn’t get in trouble. To maintain the school’s reputation so the school continues to be in demand with parents from a certain background. To jump through certain hoops to protect their teacher’s job. To learn to read and write on time so they don’t cause their parents any concern. To do well in extra curricular activities so parents can play their part in the expected performance of parenting.
Where is the space to be?
When do our children get to be?
From birth, they have to be performing to someone else’s standards.
If they do well at this, they reach adulthood and the pressure never ends. They will go to university and have a role to perform there. Standards to uphold. They will go to work and have a boss or a department to protect and uphold through their work efforts.
But no space to be.
If you need space to be – if you, for whatever reason, cannot continue to perform for these endless targets – then often the only option is to drop out.
But there is no support for that.
We have few alternative spaces for children who are not coping in school. Little public resources to cater for them. Little if any financial support for a parent who has to choose between continuing to send their child to an institution where they are distressed, or leaving work so the child can recover at home (under homeschooling).
I grew up in a very academic family. My father and both grandfathers graduated from Cambridge university. A degree from a first class university is the norm not the exception in our particular culture.
The most freeing and liberating thing I ever did was to leave the entire system. To step out of the lane of education – work – retirement. It’s terrifying because I don’t have a pension. But I was able to recover myself from suicidal thinking and a lack of a sense of self and it took years. It is still a work in progress.
I was able to do that because I had financial support from my now-husband (and through him giving me that he is now more trapped in the cycle I was able to step out of, because he has to support me as well as himself) and from my family. I was lucky. Without that support, without that generosity, what would have become of me? Where would I be now? Would I be, now?
It is my firm belief that the rate of autism and ADHD is not rising. We have always had the numbers of autistic and ADHD people we have now. What is rising is the rate of pressure and distress among young people. What is rising is the amount of pressure on parents. The amount of pressure on teachers. On schools.
There is a given among the autistic community that anxiety is a part of autism.
But is it?
The anxiety I experience has in large part been relieved the longer I have been out of the rat race. Anxiety is not a fundamental part of my autism. It is as a result of having to fit a system that didn’t fit me.
I was able to leave the system and find myself. I was able to reclaim my identity through space, through time, through connection with nature, and through my autism diagnosis which helps me protect my right to sensitivity.
There was never anything wrong with me. But without the space I have been provided over the past nine years, I would continue to believe that there is.
I used to worry, before my own diagnosis, about my children being given special needs diagnosis. I used to think children with SEN diagnoses were somehow less than. But I no longer think that. I see diagnoses as the only means of protection we have for our children against a system that often denies them the right to have needs. That denies then the right to be. These diagnoses don’t always achieve that. But they are a start, they a stepping stone, they are a lifeline.
I wonder where the spaces are for our young folk to be. How they can establish a sense of self amongst the noise and the pressure. It’s so important that we start thinking about how to reclaim that for them. That we reclaim their right to be more than a statistic, more than a grade, more than an early walker or a late talker, more than a performing monkey.
Maybe if we did that, the astonishing and tragic rates of bullying, self harm and suicide we currently see among our youth would begin to drop.
This Bank Holiday weekend I’ve mostly been reading old diaries. It’s strange reading the voice of 15/16 year old me.
Reading them has coincidentally corresponded with the vote repealing the 8th amendment in Ireland. I followed that closely. It hit very close to home to hear people casually discussing the rights I should have. It reminds me that our rights are not for granted.
Almost a third of people in Ireland think that I shouldn’t be able to terminate a pregnancy if I am raped. That my daughter shouldn’t be able to. That someone else’s choice should be able to determine the rest of our lives.
I’ve seen very little talk online, in relation to the Irish referendum, about the culture young women grow up in. About how we are told, by pornography, by advertising, and by TV shows, that our worth lies in being able to make men want to have sex with us.
Nobody talks about that. And yet so many people will talk so casually about how we should be allowed to deal with the pregnancies that inevitably result from us fulfilling this role we are given.
I wasn’t prepared for the anxiety that would come with being a mother to a daughter. Since I was a teenager, the smartphone was invented. The widespread availability of porn is changing lives for our youngsters beyond that which we can imagine. I can look back and see how my own life was touched by it. But that was before the smartphone. What is life like for them now?
In porn, a woman is only as good as the appearance of her body and the sex acts she makes possible.
Every day, our young people have almost unlimited access to these videos on their phones, for free. Our daughters are sitting in classes with boys who will be watching a lot of these videos and some girls get asked for pictures of their own naked bodies. I am the first person to love my smartphone but I can’t imagine what this is doing to our young women (and also to our young men).
We leave our young woman growing up under this pressure, we don’t talk about it, we rarely prepare them, and then if they have an unplanned pregnancy, they are the ones who bear the weight. They are the ones whose bodies are marked and changed by termination, pregnancy and/or childbirth. They are the ones who carry judgment for abortion or an unplanned baby.
There is a lot of talk about consent these days. We all want sex to be consensual. But how consensual can it really be when boys are taught that real men are virile sexual conquestors, and girls are taught that sexy, desirable women say yes?
But what about the internal damage? The damage of growing up to believe that you are only worth something if a man wants you? That if you aren’t having sex you are failing? And then of course, it’s your responsibility as a woman to make sure you are contracepted – of the 15 kinds of contraception listed on the NHS website, 13 are suitable for women and only 2 for men.
The message our young girls so often receive is: be sexy, be available, but also make sure your body is prevented from fulfilling it’s natural function.
I’m happy for the women of Ireland but THERE IS STILL SO MUCH TO BE DONE. It is not freedom when women are granted abortions to relieve them of the mistreatment of a patriarchal society. We need to make sure that all sex is freely and fully consensual and enjoyable.
It has upset me a lot, reading my diaries. It has answered a lot of questions. There’s a lot I don’t remember, so, it’s useful that I wrote it down. When I was 16, I spent a year at boarding school, and had a breakdown. I’d really forgotten how bad my mental health got that year. A whole breakdown, forgotten. Trauma does that to your brain.
Now I’m 32, I feel free to use my brain. I feel that I am worth so, so much more than my dress size or how many men find me attractive. I stopped dying my hair last year, as a symbol to myself of how far I have come. It’s important to me to reclaim my body.
But I guess I forgot, somewhere along the way, what I was reclaiming it from. So I’ll let my teenage self speak. These are some excerpts from my diary:
[After I had kissed someone I really liked]: “From the moment things started everything felt wrong, I knew it wasn’t right. He treated me like a whore, and it wasn’t fair.”
“The thing with [crush] is that he never wants to go out with girls, he just wants to treat them like whores.”
“It’s the law that girls should be less experienced than blokes. Sexist but true. I want to be with a bloke who knows what he’s doing.”
About Paris: “And the blokes. Really chatty. Perhaps they come on a bit strong – ‘Smiles’ wanted me to stay and learn ‘French’ with him! – but it’s flattering. I was glad [companion] was there, I felt safe. The barman was sweet – he stroked my face!”
“I feel so insecure about my face. I hate my moustache – I bleach it but it’s still really obvious in my mind’s eye. And my nose is too big and my skin bad. I’m confused coz when I look in the mirror I see me – not ugly really at all, not the prettiest girl in the world but not the most minging either. But I guess boys must be right. I wish I’d been born pretty, life would be so much easier.”
“I like being at a girls school because no one judges you on your attractiveness. Some of the ‘in’ girls here are so minging compared to Warnie [old school]. There they were all size 10 at most, here… Well [popular girl] is size 16, to name one. [Popular girl] is fairly hefty too. Sorry if I seem bitchy, I really don’t mean to be, I’m trying to point out that this should be the way all groups are. Here I can look people in the eye, lift my head up and expose my spotty face because I don’t feel the eyes of 100 blokes on me, thinking ‘she’s minging’.”
“[Male peer] said I was ugly last weekend. I know my face isn’t great. But why do boys feel the need to comment on girls unattractiveness? It’s so degrading. I wouldn’t dream of doing it to him. It’s not fair. I hate him.”
“Boys don’t need to prove themselves to anyone. And it pisses me off the way women are prized for beauty. It’s just something some women are born with. Most aren’t and are disadvantaged. I hate society.”
Underneath all my entries, particularly as time goes on, is a panicky feeling that I have ‘failed’ by ‘still’ being ‘a virgin’ at 16. I rarely write about anything beyond my appearance, boys, friends and my mood – despite having an English teacher for A level who was really excited by my promise.
I’ll finish with a poem I wrote a couple of years later:
“To look at me
And see more than an attractive girl:
The glass plated doll
With the suggestive eyes.
To listen to me
And hear more than the ego massage
The loving words trip so willingly
From the trusting mouth.
To talk with me
And hear my thoughts and ideals:
Rather than using this sounding board
For your self-trumpeted wisdom.
To spend time with me
And realise I am more than an accessory
A fully-functioning dancing doll
Yours upon request.”