On the Rising Rates of Suicide

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.

The End.

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My teenage diaries, and thinking about Ireland

*Content warning – teenage sex, porn, abortion.*

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?

Requests for labiaplasty increased by 39% in 2016 in the US. Teenage girls who are not yet finished developing are being treated for rough sex injuries, for example, faecal incontinence.

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.”

#forourgirls #letsdobetter

My year of living transparently

Well, not really. But I’m trying.

See, one of the things I find about having been bullied – and my subsequent attempts to deal with that – is that my response has been to hide myself away: that loneliness becomes something I carry around with me, no matter how many people are there.

Here I have written about some of the paths I have taken in attempts to find healing.

———–

My first attempt to deal with the bullying was to move across the country and start over again, trying to build a new personality from scratch. That didn’t work so well. I had a lot more friends than I’d ever had before, but, I felt lonely inside. I didn’t know who I was or how to show people that or even that that was important.

I was trying to put a new personality on top of a traumatised one, and parts of the trauma would leak through. As time went on, it got harder and harder to maintain the new personality and more and more pain would break out. I’d not treat people well. I’d feel out of control. I drank a lot. I would lose my temper unexpectedly. My emotions were all over the place. I struggled to hold down a part time job.

Something that made things harder was meeting my first serious boyfriend. I thought a relationship would take my loneliness away, but I found that in a relationship, I was presented with a mirror to myself, and because I didn’t like myself, I couldn’t handle that. Trying to create intimacy and vulnerability – while also denying the person I am – was completely contradictory and a very confusing and all-consuming way to live.

One of the off shoots of my internal loneliness was the way I saw church. I started to go to church while in my previous relationship… I’d never been part of a church before and initially it struck me as a group of people who had shiny happy lives – lives I coveted. I felt so on the outside and I wasn’t sure how to integrate in a community, I’d never learnt those skills. I thought acceptance would come when I looked like those other people.

Thus, early on, I started to believe that part of being a Christian was looking shiny and happy. That was really damaging, because if God makes people, then accepting the person that He made and called beautiful – exactly as you are – is worship and faith in Him. I spent a lot of years as a Christian feeling not good enough and that I wasn’t a “proper” Christian until I looked shiny and happy and was a visible part of a church… But the irony was that I didn’t really ever feel part of a church until I had accepted myself in all my awkward beautiful glory (and, skipping ahead a bit, that started to come with my autism revelation – six weeks after I got baptised, three years ago).

Denying who I was caused a whole heap of trouble, and it caused me and others a lot of pain. And the upshot – the crisis point – of it was that I ended up losing some friends I held very dear. That hurt worse than the childhood rejection, because I not only had that rejection to deal with, but it also opened up all the underlying rejection I’d never dealt with. And also, because I’d tried everything in my power to stop it happening and yet it had still happened, I felt quite powerless – and like maybe I deserved to be on the outskirts of society.

In the long run it became a really good thing. Like ripping a plaster off. I needed to deal with all that pain but I was never going to get there on my own.

———–

So my next attempt was to hide myself away. I didn’t know how I could be me and be accepted socially, so I just hid away – in our first home, on the outskirts of a small town. I saw a counsellor; I walked the dog; I grew to have a mentoring friend, who I visited most weeks for a chat and to share our stories; and of course I had my husband. We also rented a room to a lovely person, who became an amazing friend… But aside from that, I couldn’t bear to open myself up to people. My circle was really small. We went to a church in another city, and it was really big, so I could be anonymous. I had control over my relationships, and I didn’t have to let anyone in further than I wanted. Even once I eventually started work again after my breakdown, I mainly kept to myself.

That period of my life was the start of empowerment. I decided not to seek friendships until I liked and accepted myself enough not to be defined by the acceptance of others. I knew I was lacking a core sense of self and that I could only move on once I’d found it. I enjoyed getting to know myself in that time; I enjoyed those long walks, just me and the dog. I had never before been able to be by myself and be content.

I didn’t really need to leave my little bunker of solitude… until we had our eldest. And suddenly, it didn’t work so well any more. Motherhood is infinitely easier with others alongside, and where once I had found it easier to deal with a hard time in solitude, with a child a lack of support made us both so much more vulnerable.

And there are other reasons it no longer worked so well… The environment I lived in was now the environment my children would grow up in. I didn’t want them to inherit my isolation and fear of the outside. I wanted to teach them how to engage with it. The minute my son was born, the house we lived in – from which I needed to get a bus to go to a playgroup – the house we started our marriage in, the house I recovered in, it suddenly became terribly impractical.

———–

And so, when my husband looked for a new job, we looked for somewhere attached to a thriving community. With playgroups, shops, and churches we could walk to. With good public transport. With lots of ways to meet people. A place where our children could grow up loved.

If you know where we live, you know how lucky we got. It couldn’t be better for that. And as we waited to move here, I sort of thought I would just be able to slot myself in. To go from a place where I felt very isolated – externally and internally – and just hit the ground running in a community.

I found it didn’t work like that.

For a start, when we moved I was all over the place with OCD.

But also it’s that, feeling unacceptable in myself was something I projected onto everything around me. Every decision I made in regards to parenting I felt exposed in. My son had some behavioural challenges and I took that very personally, I thought people wouldn’t want me around, I anticipated his rejection and withdrew us before I could feel any rejection. It’s still something I struggle with, I don’t with my daughter for some reason, I feel tougher, but with my son I feel very exposed. It’s important for me that people accept him, but I find it hard to pursue areas where he might be accepted. And I feel a bit shit about that, because I can see how it’s affected him.

But all things in time, all things in time. I have hope for the both of us yet.

It’s been gradual that I’ve been able to work at feeling accepted. We’ve been here almost 3.5 years now. After we’d been here six months, I realised I’m autistic, and that felt like the final and most important piece towards internal acceptance.

And then after eighteen months here, we started going to our church, my son started going to nursery, and then my daughter was born. All of these things brought more external links into our everyday lives. I’ve been much more confident getting out and about with my daughter. I don’t have that same feeling of being judged and unwanted that I carried when my son was born.

I’m really, really proud of all we’ve achieved here, in this place.

———–

And so, last year, not long after my daughter was born, I decided to stop relying on Facebook for socialisation. During my time living in solitude, and then after my son was born, the internet was an oasis and a life-sustaining resource which met many of my needs. I first of all started using a mental health support forum. I then stumbled across groups for other people with balanced translocations, experiencing similar fertility struggles to me. I used a large fertility forum online. I used mummy groups on Facebook, and after I realised I’m autistic, the first thing I did was join a Facebook group for women with aspergers.

These groups were so helpful. They helped me practise expressing myself in a way that felt safer. It initially felt scary, to join a group and reach out, but the more I did it, the more confident I found myself feeling, and the easier I expressed myself. And I found that, contrary to how I’d felt all my life, I had things to say that people found worth hearing. It also gave me a chance to notice things, like how easily I feel rejected, and how much I struggle to put myself forward. The moment I notice something, I can work on it. I found a great deal in those communities and they gave me more than I can adequately express.

But eventually I came to feel like they had become my safe place, which I was now ready and needed to move on from. It was sort of like they’d helped me build training wheels for life, and there comes a point when training wheels are holding you back. I was staying in my house and talking to people far away, when there was a community close to me I wanted to be involved in – and I wasn’t going to push myself into that community until I was uncomfortable enough to need to. I was itching to live more transparently, both in my community and online.

———–

So last year, I left all the Facebook groups I relied upon. I did it on a wing and a prayer and with a hope that I might find the void it left filled with some people I could see and touch. People my children could know, too. I did it feeling very vulnerable, leaving behind people I’d interacted with daily for years.

It’s fourteen months later now. I still feel a bit scared. I still feel very vulnerable. But the last year has been amazing. I have experienced life on a different level than I knew possible before. Opportunities have come to build relationships. People have shown us amazing love. I have felt hurt at times and am learning to navigate that – I know that if I want to open myself up to people it’s important to learn those skills.

The highs and lows have been pretty intense. I didn’t realise how vulnerable I would feel once my son started school locally. I see parents and children every day that we will probably know for the next seven years, and I didn’t realise how exposed and terrified I would feel with that. How personally I would take his failings, yet again. How I would relive everything I went through at school, over and over again.

But it’s ok. It’s going to be ok.

It’s amazing to have the opportunity to work this stuff out. I’m a firm believer that every cloud in my life can have a silver lining. Only when the pain comes out, can it be healed.

And it’s given me a passion. Having hidden myself away for so long, I don’t want to do that any more. At all. When I left my Facebook groups, I thought, I want to be able to share as openly on my Facebook timeline as I do in these closed spaces. And so I’ve worked at that. I find that with putting myself out there, there is a desensitization process. I start by feeling very vulnerable. But gradually, it gets better.

I used to feel extremely anxious about expressing myself on my Facebook page because it is so public. I would be really perfectionist and try to not share “too much”, and only things I knew would get a positive response. It started to feel less and less authentic as I uncovered more and more of who I really am. I admired people who could put it all out there. I know it’s not considered sensible by many. But to heck, when other people do that I feel safe – I feel like it’s ok to have imperfections.

On Facebook we’ve started to share other people’s words more and more. Other people’s self expression. In my early Facebook memories are just MY words, MY pictures, other people talking TO ME. But in recent years my memories have become more and more full of other people’s words – in memes, in articles, in videos. Where are our voices? Where is our truth? I like a good Facebook article or video and goodness knows I read and watch enough. But in all of those I wonder, where is the space for us?

So I started blogging and generally trying to share more on Facebook. Not telling other people how to live (as little as I can… the struggle is real!!). Not with the intent of making many followers. That must be so stressful. Just sharing my life. Open for criticism. With the aim of maybe encouraging a safer, less perfect feeling space on Facebook. It’s totally uncool to write a blog about your own life right? That’s why I have to do. I am very uncool, I do care about things intensely, I tend to be very transparent, and if I keep that hidden out of shame and a fear of rejection, then I will project out to others that it’s not ok for them to have those traits either.

I have a friend who writes poems on Facebook, it is a light in my life every time I read one. I have another friend who shares videos of herself talking about her faith. There are so many more, sharing themselves in different ways that are beautiful, on Facebook and not. I love these people, and I love the insight their words give me into their souls. It makes me feel like it’s ok to bare mine, too.

I do this quite a bit for myself, because it heals me massively to share myself positively. To know that any acceptance I feel is for the person I truly am. But it’s also to create a space where people don’t have to feel like I did, I hope. To be a person that people know they can be truly themselves with. I’ve had that from people – authenticity and openness – and it has helped me heal so much. So I try to create spaces that offer that back.

———–

I want to do more. I want to go into schools and talk about autism. I want to talk about bullying. I want to create spaces for people who are mentally ill, or who have experienced childhood trauma. I want to create spaces for new mums, where they can come and just be. At the moment, I want to do everything. I know that’s not possible, but, it feels very exciting to have so many dreams when I’ve always doubted myself so much. To feel I have a purpose.

I figure, who better to do these things than an autistic person? I am everything society thinks is weird, and if I can be ok with myself and project that, then hopefully other people can feel ok about their weirdnesses, too. I don’t know how much of this I can do, but I feel like, if I keep offering myself up to God, the ways forward are going to keep coming.

And after my year (ish) of living transparently (ish), and despite how uncomfortable it can be, and the rude and unwanted interruption of some very persistent OCD, I currently feel happier and less lonely than I ever have. So, I guess it was worth it…

Peace out.

On the rebellion of being happy 

I’ve been thinking a lot about happiness recently. I consider myself a pretty happy person. Not in the sense that I’m happy every second of the day – often I’m unhappy… My kids are grumpy, sad, or mad; I’ve not slept enough; I’ve forgotten to do something; endless things make me unhappy. But in the bigger picture of my life I’m happy. I like my life, I like where it has brought me, I’m at peace with the choices I’ve made, and I’ve had the opportunity to resolve and confront a lot things that held me back.

I don’t use the word “happy” lightly, often I’m severely depressed or anxious, and I don’t think there’s ever a time when my mental health scores “happy”. I’ve struggled with my mental health since I’ve was about 8. I’m OK with that. It is what it is.

I have learnt a lot of tools to deal with my mental state over the years, and that gives me optimism that I can learn to meet the challenges life brings me. I feel I am a happy person even during those times when I am depressed, I don’t find my depression a bar to a wider sense of completeness and fulfillment. Battling and accepting my depression is one of those things that has brought me meaning and a sense of happiness and peace.

———————–

The world says, you have to be perfect before you are happy. You have to be mentally balanced. You have to be eating 5 a day. You have to be working out. You have to be a mum who’s got it all together. You have to be well informed. Whatever your interests are, there’s a way for you to be told that you are not “enough” yet. But I look around and I think, those things aren’t coming for me anytime soon. If I’ve got to the end of the day, and we’ve all eaten enough, we’ve enjoyed each other a bit, we’ve expressed love to each other, then we have all that we need.

Even if what we have eaten is pizza and fish fingers, we are still allowed to be happy, we are still allowed to feel complete.

Even if our child has spent an inordinate amount of time watching some awful cartoon containing awful fighting, we are still allowed to be happy, we are still allowed to feel complete.

Even if we have lost our rag, even if we have been late, even if we haven’t fought against injustice in the ways we would have liked, we are still allowed to be happy.

One thing I find about Facebook is that I come on, and everyone has their causes, we share all this information all the time and that’s great, I love it. But in amongst that it is easy not to feel enough, it is easy to feel like everyone else is doing more to improve the world, it is easy to feel lost about where to direct my attention and energy, because I want to fix all the wrongs all at once. And then it’s easy to get into this mindset that I can’t be happy until they are all fixed.

And there are all the people who think phones are ruining our world and relationships and while I use the Internet as much as I do I definitely shouldn’t be happy, so while I’m on my phone I always have this nagging thought, “am I enough? Can I be happy?”

My parents are both activists in different ways, I was brought up with an understanding of environmental injustice and the ways in which we are concurrently being robbed of a future while we also rob our children of our future. And you know what, it really did my head in for a really long time. I felt trapped and miserable and unable to change anything.

And the truth is, I can’t change very much. The – sometimes quite crushing – belief that we have the power to change the world is, I think, quite possibly a particular uniqueness of our moment in time, encouraged by the notion of democracy and by social media, which both in theory give everyone a voice.

It’s a lie. There are around 7.5 billion people in the world and even if I am someone capable of wielding a great deal of influence, I won’t change very much. And I’m not one of those people.

To be honest, I wouldn’t very much want to be one of those people, with great power comes great responsibility and all that.
So what can I do, with so much to change and so little platform with which to do it?

I can be happy, I can allow myself to appreciate the things I have. It can feel trite and even selfish to allow ourselves that, when we are so aware of how others are suffering all of the time, thanks to 24/7 worldwide news. But what do we think? That the people who die unfairly all over the world every day want us miserable?

With what energy will we love the world if we are miserable?

How can we fight for others, if we don’t think that what we have is worth fighting for? If we don’t think what we have is a good thing to be shared?

But to allow myself to be happy, that I think is revolutionary, that I think could change things possibly as much as I am able.

If we are radical enough to allow ourselves to enjoy what we have, then we cannot help but change the world around us… It spills out of us from our wholehearted engagement with life.

The End.

What I understand autism to be

**Disclaimer – I am not an autism expert. I am only talking from my experience of autism, and also from what I have learned from conversations with other autistic people close to me. I am not attempting to make a general definition of autism; I think it’s really important that we listen to every autistic person’s experiences and thoughts.

Also, this is just as I understand things currently. As I learn and experience more, my understanding of autism may change.**

I have been thinking about how to word this for a while, and generally being really perfectionist about it. But I feel that in order to talk about my own autism, I really need to first explain what I understand as being meant by the word “autism” – through the lens of my own experience – so here goes nothing…!

So when I worked with autistic children, and also when I was diagnosed, I learnt about the “triad of impairments” that categorise somebody as being autistic. These are impairments in: social imagination, social communication, and social interaction.

The more I learn about my own experience, and the experiences of others, the more I think this is woefully inaccurate and lacking as a description. I have come to believe that autism has been defined by looking at a narrow field of behaviours that arise – particularly in some young boys – in response to an internal experience. And then those behaviours have been taken to form the basis for the understanding of what we now call autism.

I happen to believe that those classically recognised behaviours are only one way of pointing us towards what autism actually is. I believe, in line with this #actuallyautistic definition of autism, that what is meant by autism is a particular internal experience, which relates to the way we interpret and understand the world.

So I think from my own experience, that I see a lot of detail in the world, not just with my vision but also with my other senses. My senses can be very sensitive. I am always taking in and processing a lot of information. And this same way of being allows me to learn a lot very quickly, to see things in new ways, and to be creative – because I am taking in a great deal from my environment.

I was really pleased and encouraged to see this notion of autism as being about how a person processes information being put across in the recent programme “Am I Autistic?” If you’ve not seen the show, I really recommend it – I think in that particular segment they explain what I am trying to get across here really well.

This way of experiencing the world can lead to social differences, routinised behaviours, controlling behaviour and all the other things typically associated with autism. This makes total sense to me, and I know I have experienced all these things, as a result of my intense sensory experience of the world and attempts to process that.

What I have also found, through realising this about myself, is that I don’t believe I have a fundamental social difference. I have felt like I do for most of my life, but I’ve come to believe that that came about as a result of my interpretation of the world and my behaviours in response to that. And also as a result of being misunderstood by a world which does not accept or understand autistic behaviours.

My earliest, most powerful memories are sensory. Of things feeling chaotic. Of being terrified of loud noises. Of being terrified of a lot of foods. Of not being listened to in those experiences and then being deemed to be problematic for fighting for my right not to be traumatised. These are my earliest memories. Feelings of social difference didn’t arise until later. It is hard to learn functional social skills when you are having to fight all the time to be heard. Ditto, it is hard to learn empathy when you are not seeing it. And I feel that, in being labelled as having this triad of deficits, I am in a sense being re-traumatised in still not having my understanding of the world recognised.

I’m pretty outgoing. When I first told one of my best friends from university that I am autistic, shortly after realising, she said “but you’re so extroverted”. Yes, I am pretty extrovert, I don’t cope well with an isolated life, I love getting to know people and having strong relationships and a sense of community is really very important to me. (What I mean by “extrovert” is gaining energy through being around people as opposed to through solitude.) I have suffered a lot through my life through not having that and at the moment I do have that, more than ever before, and I realise it is fundamental to my human needs and how much not having it has been hurting me.

Again, I am only talking about my own particular experience, and I am not saying “autistic people are extrovert”. What I am saying is that we can be extrovert, and we can, I believe, have good social skills… Because I don’t believe that my autism is fundamentally about my social skills. I don’t think my ability to have social skills is either here or there in regards to the way my brain is wired.

In another segment, the show “Am I Autistic?” portrays four women talking about their autism, the focus was on how stressful and unnatural socialising feels for them and how it will lead to meltdowns. That’s not my experience, I love socialising, and find it comes very naturally to me at this point in my life – although in noisy, chaotic environments like bars or playgroups I find it harder to feel relaxed.

I do however very much struggle with the executive function required to maintain relationships – I often forget people exist for large chunks of time, unless I naturally see them all the time. My executive functioning issues cause me problems with my day to day running of life and a home – for example, I find cooking really difficult; breaking down the steps required to make a dish, finding all the required utensils, cutting the vegetables up, and so on. Tasks like that with lots of tiny steps can be very stressful for me. And that stress can build up to eventually cause a meltdown if I don’t keep it in check. I do a lot of frozen food which is a Godsend for us. (I also find cleaning really hard for the same reason – too many tiny steps to break down. And those many tiny fiddly steps of cleaning and cooking are hard for my dyspraxic hands, too.)

These experiences aren’t “autism”, and I’m not speaking for “autism”. This is just me, and these are my particular challenges related to being on the spectrum. Other autistic people will likely have different challenges and might find cooking and/or cleaning very enjoyable.

Although I don’t think I am fundamentally socially disabled, I have been disabled in my ability to learn social skills by the way society-as-we-experience-it-in-turn-of-the-century-England is set up. I have been disabled by being assaulted constantly by noisy, cluttered, chaotic, stress-inducing experiences – experiences which are more common in our late capitalist culture than at any time before; in the form of shopping malls, large supermarkets, ginormous cities, artificial lights, colours, and fabrics, ever expanding school sizes, increased testing of young people, increasingly sedentary lifestyles, constant artificial background noise from TVs and radios, and so on and so on. We also teach young pupils in a way that imposes knowledge upon them, instead of allowing them to naturally uncover it – the latter being the way I naturally learn.

We often count large and stressful life changes as being part of a very “normal” childhood experience these days – moves to new areas, with no extended support to the nuclear family; moves between schools; break-up of the nuclear family. None of this is meant as a criticism to my fellow parents, who are experiencing very high pressures and stress without any additional from me! But at the same time, it is a fact that I experienced all of these three things close together in childhood and my ability to function greatly decreased immediately afterwards. And nothing in my childhood was counted as having been abnormally stressful or traumatic at the time – but actually, as a person who is filtering a lot of information all the time, it was very hard to adjust to changes in my home life, changes in my support network, the loss of my friendship group, and having to get to know a new town, all in a very short space of time. It was very stressful.

(And, from my own experience, these societal changes are the crux of why I personally believe we have this very visible rise in autistic people struggling to fit into and make sense of the world.)

So, at the heart of it, I personally believe that autism is a way of processing the world that is more sensitive and detailed than culturally we expect and typically allow for. I do not believe this way of processing is currently being respected by the lifestyles we are pressured into, and I see that wreaking havoc on increasing numbers of young people in particular, as the amount we ask of them from a stress-and-sensory point of view becomes more and more.

I’m absolutely not saying that if we simplify life, autism will go away. It won’t, because it’s about the brains we are born with, I believe. But it’s possible we would find many autistic people functioning better. I know I have functioned better as I have simplified my life – but I am able to do that because I don’t rely on my own full time work, and am not trapped into a lifestyle which is damaging and traumatic (as I was before I met Pete). I am also able to simplify my life because I don’t have to go to school five full days a week, as our education system requires of our children.

So, this post is my explanation of what I think my autism actually is. And I believe that it very much overlaps with what has been defined as the Highly Sensitive Personality – a definition which looks first and foremost at the experience of the world, rather than the behaviours which can arise as a result. (I related to the idea of HSP a long time before the idea of autism, simply because it spoke to my inner experience instead of some prescribed outer behaviours I often don’t relate to.)

I also contradictorily feel that autism doesn’t really exist. There is so much arguing about the boundaries of autism and what constitutes “proper” autism, when it’s a notion we as human beings invented, and we can put the boundaries wherever we want – where they are helpful to us.

This doesn’t mean I think that diagnosing autism is unhelpful or unnecessary – far from it!! I have found my diagnosis so liberating. I feel that the notion of autism is here to serve us, rather than the other way around, and it’s important we don’t use it to trap others and/or ourselves. We can use the idea of autism in whichever way it serves us best as a society.

**Again, I am not an autism expert, and I am not an expert on anybody’s experience except my own.**

I wore my wedding lipstick to meet my lover

I wore my wedding lipstick to meet my lover today.

I didn’t realise until after I’d put it on, and then it seemed pretty perfect.

My wedding lipstick is minimal, barely there, but glittery. I hardly ever wear makeup, and lipstick even less. But today felt like a lipstick occasion. Today, I put my lipstick on.

As I watched myself apply it, I thought of the first time I wore it, almost seven years ago. The makeup trial before the wedding. And then how I’d felt, wearing it, walking up the aisle to meet my husband.

Today, I walked up the aisle to meet my lover.

As I sat in my seat waiting to take the long walk alone, I recollected how I’d felt, as I waited outside the church to walk and meet my soon-to-be-husband. I felt nervous. I felt more nervous than I had at any time before. I was about to commit my whole life to somebody, somebody I’d only known two and a half years. And I was going to do that in front of all my friends and family, and even some people I’d never met before.

That was the hardest part. To say those vows in front of so many. I was shy. We talked about running away, having an elopement. But I wanted to have a “proper” wedding. I wanted to prove to myself that I could do it. That my bullies, ten years before, couldn’t take that away from me.

So I walked up the aisle that day, and I married my husband. It was a turning point in my life. It made a statement about who I am.

Today, I walked up the aisle again. I walked up on my own this time. I didn’t meet my husband at the top. I was all on my own.

Almost seven years have passed since I took my first walk up the aisle.

In seven years a lot has changed. I now wonder why it scared me so much that day, to say those vows. I can look back over seven years, and see it was the right thing to do. See all the joy that scary walk led me to. And the fear looks so small in comparison. But I couldn’t see it then. Then I could only hope. Hope that my lover would meet me, too.

He has met me, he has led me. So when I walked up the aisle today, I felt infinitely more confident that he would meet me again. That I would not be alone, even as I felt more exposed.

I spoke at church today. It was Good Friday. I wore my wedding lipstick to meet my lover.

I haven’t spoken in public in seventeen years until this month. Not planned. Apart from my wedding. But just like the bullies couldn’t take away my wedding, they can’t take away my voice, now, either. They can’t take away my desire to talk about the things that have happened to me.

I felt two other people with me today, too. I had my grandmother’s cross, and I thought about her, a woman of faith, and I thought about my grandfather, who passed last year. I thought about him, he also walked up the aisle alone. He also gave voice in church. And then he left, and he didn’t do that any more. But I was aware, aware of that legacy with me yesterday. Aware of those two different examples of faith I carry before me, enshrined in one cross.

I felt them all with me, my grandparents, my lover, and me.

Postnatal depression, climate change, and how I questioned my faith

I wrote this in July last year. It’s an emotional one, and it’s taken me a while to share.

Content warning – climate change, the state of the world, swears

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I always find July a super emotional month these days; we have our wedding anniversary, my birthday, and then my son’s birthday. I realised I have aspergers on my birthday 2 years ago, so that’s another anniversary too. It all makes me contemplate how very lucky I am, how very different my life currently is to the life I imagined for myself.
This July I’ve found even more emotional and wonderful. It’s our first July with our wonderful little E with us. Also this July I have completed my peer support training and a year going to Acacia, a local charity which supports women with pre and postnatal mental illness.

This is hard to talk about but I grew up knowing a lot about climate change, particularly as my dad works in sustainable development. It was when I was 12 that I was first told that he thought the earth would not make it. It was earth shattering. To think of living to see the end of the world.
Throughout my teens my world was full of fear and being prepared for the apocalypse. I felt utterly trapped and alone and suicidal, and I decided not to have children because what would they come here for? I was bullied at school for a long time and I didn’t have anything to fight it with because what was the point, I had nothing to fight for.

I started to have mental health treatment when I was 21. About the same time, I had two what might be called spiritual experiences. The first had me see myself giving birth, and then walking with a little boy. The second led me to believe that climate change is – I very much hesitate to use the word plan, I don’t believe that suffering is a plan, but I always jump to the word plan for want of a better one. Perhaps a better phrase is “something bigger”. Part of a something bigger that I cannot understand – and that all I am asked to do is what is asked of me, what appears before me in the moment, and it will work in some way towards a whole that I cannot presently grasp.

Those experiences absolutely changed my life, they brought hope for the first time. Because of those experiences I was able to focus on my mental health, on healing, on Pete, on my infertility, on IVF and building a family. Climate change was in a little box marked Do Not Touch. I tried to be Green always, as far as possible, and that was that.

When my first child was a year old, my world came crashing down. I started to have what they call intrusive thoughts; intrusive memories. Ebola and ISIS were on the rise that summer and my little boy seemed so vulnerable, the realities of everything I knew about how fragile our safety and our future are came flooding back. My husband started to work in Birmingham then, and Sam and I were still in Loughborough, Pete was exhausted commuting and we barely saw him. I felt so alone, totally suicidal, and I regretted making that choice to have a child. Eleanor was like a terrible weight around my throat because she was already conceived, she was already with us, frozen at the fertility clinic, but I felt so despairingly guilty about the baby I already had that I couldn’t see how I could bring another into our family. I loved my Sam too much to trust to this world.

To start with, after the despair resurfaced, I felt I had failed God by no longer being able to live in that vision of hope. And that made me feel even more confused and awful. But as time went on, I came to see it differently, I started to feel trusted that it was coming up now, that the divine in my life saw me as strong enough to tackle this now. That – through meeting my person who trusted and supported me (Pete), and through the arrival of Sam – God had strengthened me and strengthened my faith just enough to be able to do this.

It was a year into this – when Sam was about to turn 2 – that I realised I could be described as having aspergers and I was like ARE YOU FUCKING KIDDING ME LORD.

Is this for real.

Not only am I imagining the world ending what feels like every minute of every day, not only am I battling internal voices telling me I’m evil for having my son, and constant intrusive violent images, but now I have ASPERGERS?!?!

REALLY

It was especially hard because then I could see that if the medical model of autism is right – if I am inherently fundamentally flawed and less able than other people – the model I have believed my whole life without question including while working with autistic young people – then what I had been through and built my life upon, the faith that had freed me and brought me hope, that had brought my children into the world, might actually be a product of my illness, of my disability.

That thinking, working that through, while I struggled with the suicidal climate change stuff, I thought it might kill me. And sometime in that time I came across a quote by a Catholic contemplative called Richard Rohr, I can’t find it now, I’m afraid, but he said something like, when faced with the impossible pain in the world, you can do one of three things, you can avoid it, you can become an activist, or you can become crucified by it so that it changes you. And I figured, only that last one is going to work for me, that’s what I need.

So I thought about these things that scare me, I really thought about them. I got involved in climate change activism and read about climate change, I didn’t shy away as I had done previously, and it is truly terrifying. But I started to feel better, every time I would meet with others and talk I’d feel better. And then it would all creep back, but then I’d have another time meeting with people who were also thinking about it and I would get slightly stronger again. Life was very up and down, it was a roller-coaster for a long time, it felt never-ending.

The other thing I did was I tested my faith. I mean I really tested it. I thought about all the ins and outs of what I really believe. I thought about what it would mean if God doesn’t exist. It took about a year, the year or so after my baptism.

And then I told the Lord that I put all my trust in him.

I know he might be a figment of my imagination. But would that be the worst thing in the world? If believing makes me a better, stronger, (alive) person?

Stuff happened along the way, during that year, that made me think actually, this is real, what I believed to start with could have been true. And I also came to accept that I can never understand the whole picture, and to let go my need to. But it’s also entirely possible that I am completely mistaken and as long as my life is better for it, as long as I give more to the world than I would otherwise, as long as I love better for it, I really don’t care.

I have been changed by my experiences, I have been changed by embracing my darkest fears, I can’t really put into words how but it has changed me completely. Things started to get better in summer 2016 I think, about three months before my daughter was born. I had counselling. I started to go regularly to church again, a new (to us) church. I talked with a lady called Dido Dunlop, who lives in New Zealand and wrote a book about climate change and mental health. Sam started preschool. I started going to Acacia. By the time Trump got voted in, that didn’t really shake me, and that was huge, because previous similar events – the EU referendum, the 2015 general election, the Paris attacks, and so on – these things had left me suicidal and battling dark voices, because of their potential to destabilise the world.

I also learnt to talk to the voices of fear, that was thanks to my yoga teacher, when I was deep in the middle of awful things, I think it was about the time of the Paris attacks. We were in guided meditation and she said, being human is like being a guest house, we wake up each day and we don’t know who we will entertain, will it be joy or will it be pain, welcome them for all they can teach us. And I started to do that, when I would hear voices in my head that would tell me they were coming to get me, I would tell them, you are welcome here. Fear, you are welcome.

I started to realise that, my fear was not bigger than me; it was within me, so it couldn’t be bigger. It couldn’t kill me without my consent.

In the Spring, 2017, I decided I wanted to be present in my own life more. I had used fertility and aspergers support groups for a long time, but I left them to show up more day to day and enjoy what I have. I love the support groups and that’s in no way a criticism of support groups (which empowered me and changed my life) but they were no longer serving a purpose for me. My daughter wasn’t sleeping at the time and that was the push really.

It probably sounds trite and clichéd but I really want to love people, I want to love myself, I want to love my husband, my kids, my parents and siblings, I want to love the people given to me, and I want to love the earth, but I also want to cut the bullshit and not spend time where it’s not needed. I want to speak up about things I care about, I want to act where I feel called, but I also want to listen to those I see differently to. I have little control over the wider picture, but I have a lot of control over the smaller picture, I have a lot of control over my internal picture.

There’s no really dramatic ending to my story, I have just been gradually feeling better and better. My Grandad dying in April 2017 made me think a lot about what I want my life to be. About living life fully and in the moment. I enjoy my kids more all the time at the mo. I know that that could change tomorrow, maybe I will get depressed again, maybe I will have more pain to work through – well, that’s a given – and I am not convinced that I will not choose to give up living at some point, but I know that for now I’m the happiest I’ve ever been.

I wish I could end this with, and climate change turned out to be not that big of a deal. Well, truth is, these days it looks to me like the physical manifestation of 7+ billion people shopping out their physical, emotional and spiritual pain. It looks like how I deal with pain, it looks like all my worst coping mechanisms, rolled into a looming potential apocalypse.

The amazing thing is though that climate change is out of it’s box now, I understand that it’s happening, and that we need to stop the things we are doing that are contributing to it and robbing ourselves and our children of a future, and we need to stop those things now. And as far as I am able, I do stop those things, and beyond that I trust and allow myself rest.

I don’t live there any more, in the future of climate change. It’s happening but I will enjoy my time with the ones I love and I trust God with the rest – whatever form it takes – because he’s taken me through a lot so far. I used to feel like I had to choose, happiness or climate change, but now I realise that happiness is somewhere in the middle, somewhere where I hold the messiness and uncertainty of life in my hand and joy comes out of that, deeper joy than I have ever known.

I don’t believe that my life has been hard primarily because I’m autistic. I believe my life has been hard because I’ve had trauma. I would have still been autistic me, if I’d not had the trauma – but I doubt I would ever have known about my autism, because seeking to understand my pain is the thing that led me to autism. I say this because I also know people who identify as autistic who have not struggled more than the average person (whoever that is) and I am conscious of not wanting to add to the autism = inevitable terrible suffering story, which is one I don’t believe. It’s not the autism that has made me suffer. My autism has freed me, as I have learnt to use my brain in the way it was intended – instead of against it, as I was taught.

When I think about my diagnosis these days, I see it as inexorably linked to climate change. We live in a society in which ever increasing numbers of children are given autism diagnoses; in which the boundaries of autism continually widen, in response to human need.

Why is that? Is it because we are dysfunctional, so many of us?

Or is it because we live in a way that is making more and more people – the most sensitive people – visibly struggle, as the planet we rely on visibly struggles, too?

It’s not a question I have the answer to, but I do know that when I look back over my life, learning to function more productively has involved gradually removing myself from some of the trappings of consumerism – as I’ve felt led – and I only foresee those lifestyle changes gently continuing, bringing with them increasing freedom to be myself.

When I first realised I’m autistic, it felt hugely meaningful, but I wondered, what is the purpose of this, when I am feeling so stirred up against climate change? I felt torn in two directions. And yet as I have come to look deeper into both, I have begun to see that the two are very much aligned, and I’m excited to see where that goes. A world that is more sympathetic to autistic people would, I believe, be a world that is more sympathetic to the needs of all creation.