When life is hard work: the problem with 'economic inactivity'

I haven’t written much in a while because life became hard work. Not in any significant way to ‘write home about’ but enough to make it hard to find the energy and time for writing. One positive thing that’s been consuming my energy is trying to build a housing co-op, the existence of which should make it easier for everyone that’s housed there to have the space and capacity to truly live. With our commitment to making the monthly rent as closely aligned to Local Housing Allowance as possible, and the substantial reduction in mental load that sharing responsibilities for cooking, cleaning and caring would create, I’m excited to see what living actually looks like for those involved and what choices we each make when we aren’t so alone in sustaining that life. 

Already there have been mentions of running different community spaces - from a community laundrette to a community garden to a community printing press! As a relationship anarchist I’ve been getting excited about having more people involved in my childrens’ and partners’ lives, as well as space to invest more care in the relationships outside of the housing co-op too. It being a predominantly queer space gets me excited about working together to campaign around lgbt+ rights, especially in the face of growing hate towards the trans community. And having experienced the toll that autistic meltdowns or mental health issues can take, as well as the way that physical ailments can knock you sideways unexpectedly, working collectively to cushion those kinds of reverberations for multiple people feels like a very productive use of time. 

Interestingly though, if any of us actually claimed benefits such as the housing allowance in order to pay for our rent we’d likely be classed as ‘economically inactive’ by the state. Which is kind of funny given the word ‘economy’ derives from the greek word meaning “household management”, and we’d be building a more sustainable and resilient household than most people will have the opportunity to experience in their lifetime. 

As part of my work at Collaborative Future I spent quite some time thinking about how to make work more accessible and equitable. Armed with the belief that everyone had something to contribute to the workplace, and deserved an opportunity to do work they loved, I have worked tirelessly with organisations to make them more flexible, open and less biassed and oppressive. The programmes we ran focussed on people who were unemployed and underemployed, and while it was much better than employment support that comes from a deficit based view of unemployed people, I’m beginning to wonder why I fight so hard to get employers to change their practices and beliefs when the real problem is society’s relationship with labour, and who should be expected to those forms of labour. 

The reality is that if you have a chronic condition that can flare up at any time there is no amount of flexibility from an employer or understanding from your team that is going to enable you to do your work in the ways that you want or need to (and don’t forget the grief processing time needed when you are reminded daily that your wants and needs aren’t the same thing). If you have to face microaggressions in most environments whether it’s going to the gym, visiting the GP or travelling on the bus, you’re going to be on edge in your work regardless of how much work your teammates do to dismantle their white supremacy or transmisogyny. If you are raising kids in an abusive relationship, no amount of money or education is going to get you out of that situation, it takes love and care from a community that you likely don’t have. 

For some of us, living is hard work in itself and we still fail to recognise that as a society. Partly because it requires us to entirely dismantle our capitalistic systems of labour, which those in power profit from and all of us depend upon regardless of how active or inactive we are within it. While I’ve got endless advice and guidance for organisations wishing to be a better employer, I haven’t yet got a big bright vision for a society where no-one is considered ‘economically inactive’ and where our economic freedom isn’t tied to our capacity to ‘earn a living’. Sure I’ve spent a lot of time in discussions about Universal Basic Income, but I fear the generic nature of it and our hangups about treating everyone ‘equally’ (without treating them equitably) will hold back the possibilities of it.  So here’s five things I’m trying to embed within my own life to help me decouple my economy and activity from our Economy. 

1. Rest (and pleasure) is resistance

“Bodies are not machines… rest, sleep, daydreaming and slowing down can help us all wake up to the truth of ourselves” - Rest is Resistance, Tricia Hershey (Founder of Nap Ministry)

After a decade of presuming that success was tied to how fast and how much I worked, only to repeatedly find myself simultaneously scrambling out and slipping back in to debt, I finally burnt out and faced a somewhat suicidal and occasionally psychotic state of affairs. Luckily I met a partner at this point in time who wasn't phased by my mental health challenges, and who showed me that one of the ways to overcome my demons was to allow myself to be consumed by lust and pleasure and post-sex naps. I remember how healing it was the times we sacked off work for an afternoon in bed, proudly declaring that the answer to all of the world's ills was more orgasms.

What I experienced for the first time was many things: being deeply loved, being in control of my body, feeling present, and enjoying extended space to rest my body and mind. As an occasional insomniac this same partner is also sleep obsessed, and spent a lot of time discussing the effects of my interrupted sleep from having small children. I would never have accessed this kind of support and knowledge from the healthcare system if I'd approached them for support with my mental health. 

And part of that is because if the answer to much of our problems is simply rest, how does capitalism continue to function? 

2. Knowing what is earned and what is a gift

It is a gift that I can choose to rest. And I also earn that rest. It is a gift because you exchange one or two details of my life and I might be in wildly different circumstances right now. It is a gift because it relies upon the people around me doing work on themselves to not be resentful of me resting when they can’t. But it is also earned, not because I work hard to “earn a living”, but because I work hard on thinking about how I want to and should exist in the world when so much of the world is set up to stop me from having to work on that. I could’ve made the choice to remain on a high london salary back in 2019 when I got pregnant with my second child - and that would’ve been the easiest choice to make in our society right now because I’d have something to prove my worth, and because I’d have no fear about where my income was coming from. I could’ve made the choice to stay in a marriage that wasn’t right for me and I would be told that I’d ‘worked hard’ at that relationship, but in many ways it’s been harder work to leave and exist outside of that normative structure. But it’s also a gift that I could make that choice, because it is impossible for many people to have agency over their own lives for reasons beyond their control. 

Being able to unpack for myself what has been gifted to me and what I have earned has enabled me to be more humble about where I am at and what I expect of others. And reminds me to make use of the power I have in the moments I have it, because that power can disappear just as rapidly as it appeared.

3. Community is strength

Since having kids I’ve heard far too many people talking about how they have no-one to help them with childcare, and as a result it feels like the next generation is being raised on fumes! Some of this is a Political issue - we don’t invest in affordable childcare within this country. Some of it is cost of living issue - many people have had to move away from family in order to afford rent or mortgage. But some of it is an issue of what we value and invest in as individuals. The support network for my kids grew exponentially when I chose expansive forms of love. Living an openly polyamorous life has meant I now have two partners and an ex who I co-parent with. As a result there’s more than two adults involved in daily life with the kids, and I get the love and care that keeps me steady as a main carer. But as a relationship anarchist, my ability to build intimate connections with many people regardless of levels of commitments also means that I have more friends and chosen family than I used to that want to show care for me and my family regardless of their ‘status’ within my life. 

But it hasn’t just been polyamory that enables me to create a stable support system. Running community events, hosting regular gatherings for friends, buying locally, supporting people with their ideas, being authentically me with those I work with and talking about my life openly has all led to an increase in the deep profound connections that shape my world. And as a result I no longer fear being ‘alone’ with most of the common questions we all face - “how do I do everything I need to do” and “how do I respond when shit hits the fan.

4. Rallying around those most affected / those best positioned to respond in crisis

With the genocide in Gaza it’s been hard to know as someone so removed how best to show solidarity. When we ate a palestinian restaurant we decided to leave a big tip because many of the staff would be sending money back home right now. This aprroach to solidarity feels more meaningful than a random donation on a charity website or angry letters to MPs who might then raise concerns in parliament just to be overridden by others. And it got me thinking about how as a society we rarely think about supporting those who are closest to those affected by a crisis. 

Some of us (me) have a saviour complex, which isn’t always helpful. When our local community farm flooded I felt great that I had the existing relationship with them to be able to jump right in and start clearing the debris, but if I’d rocked up to volunteer without being part of the farm before that point I would likely have just caused extra work for the team. So if I wasn’t affected by flooding, and I didn’t have any direct relationship with those who were, perhaps the most important thing I can do is pay attention to those who are able to offer direct support and fund them to take time off work to be able to respond / look after their kids /  fill their cup when they are exhausted and worn down. 

On the flipside some people believe that other people’s problems have nothing to do with them (unless of course it’s a pandemic and everyone is scared shitless that they could be next). If we were to build our society based on the knowledge that everyone is ’not yet disabled’, ‘not yet homeless’, and only one fascist leader away from violent forms of oppression - would we do more to care for those who are already subject to these things?

5. Working in a life-affirming way

When life is hard work, many people have to settle with soul-destroying forms of labour. Things that sap us further of any point of existence. But it feels like the opposite should be true. When life is hard, any labour we engage in needs to feel life-affirming. 

When I set up Collaborative Future I was tired of unnecessary bullshit. While it was partly created out of necessity, as the only form of employment I could access, it was also created out of a fierce desire for young people to be able to access their fullness as human beings, not solely as cogs in a machine, and in turn it allowed me to access my truth too. The mutual care we had throughout all of our work, and the decisions to always breathe more life into each other was profoundly important. Honestly one of my favourite moments during Collaborative Future was encouraging my co-founder to sack off work to go on a date - they fell madly in love and are living a beautiful life with that partner now. I'm not sure how to share things like this as career achievements but they mean more than anything you’ll see on my Linkedin profile.

For the past few years I’ve been doing what felt like a bit of a random mush of stuff, and it’s sometimes hard to know how to explain myself. I work with a bunch of health economists and health funders to be more thoughtful about how they address health inequalities. I organise workshops and gatherings about food, relationships, creativity etc. I facilitate team away days. I write about energy genitals. I facilitate community researchers to share practices with one another. I go to sex parties and dream of running my own. I interview people for reports about power dynamics. I write about autism. I raise two kids, and want to help more people raise theirs. I design more human HR policies. I train people to be better at holding space. I DJ when I can. I dream about being a boxing coach one day. Sometimes I pick and pack vegetables for veg boxes. I study to become a death doula. I run playfighting events. And there’s so many more spaces I want to venture into and feel the mutual expansion of myself and others as we explore possibilities.

When I listened to “Embodied Entanglements” episode on For the Wild where they talked about funghi, and “behaving in a way that likes life” I realised that’s the common thread through everything I do.  Because when life is hard enough work as it is, we don’t need to work in ways that make it harder.

Understanding autistic meltdowns

Before I understood myself as autistic I experienced overwhelming reactions to many layers of life on a regular basis. But because I’d been socialised in a world that taught me these were out of proportion / weird / dramatic, I learnt to hold my meltdowns in until I was in private. Internalising that energy slowly destroyed my body - to the point where I had bowel and fatigue issues so severe that I relentlessly pushed through my trauma around the medical profession in order to try to understand it. I truly believe that if I hadn’t learnt about my autism I’d be severely ill or no longer alive right now.

Learning to accept myself as autistic has meant learning to accept that my brain processes the world differently. In doing so, it has created space and safety for my body to do what it needs to do at times of overwhelm - and while meltdowns are painful and scary in their own ways (especially when I get repetitive meltdowns that affect me every day for a whole week) at least now I can begin to look at them for what they are and shape my life in ways that accommodates my processing needs.

Two of the most important things on my journey have been a) understanding that meltdowns aren’t necessarily a sign of something ‘bad’ and b) having partners and friends who are not afraid to move with me through meltdowns and reflect and learn about them together. So I thought I’d share more about what causes meltdowns for me, and tactics we’ve explored to help us manage/embrace meltdowns as part of normal life.

What does a meltdown look/feel like?

Every autistic person is unique. And not everyone will experience meltdowns. But for me meltdowns are very intense outbursts of physical and emotional energy, which can include things like screaming, punching my own head repeatedly and other sudden acts of self-harm. The meltdown itself can last anything from a minute to much longer repeated outbursts within a single day - though there are also ways my brain starts to fragment during the build up to a meltdown.

These days I can often feel a meltdown building, which helps me implement some coping mechanisms and communicate my needs. But, if a meltdown decides it’s arriving it is sometimes impossible to stop it entirely, so the build up can feel like a tidal wave or inevitable flood which sometimes creates more anxiety within me.

Once the meltdown is released, I can feel tired afterwards but I generally feel relief and return to relatively normal/calm state fairly rapidly. This can be a particularly confusing element for other people as there is often a misconception that intense expressions of pain mean there are more sustained / deeper feelings underneath, which is why it’s important to understand what someone’s meltdowns represent and where they come from specifically.

What causes a meltdown?

For me, meltdowns are caused by a variety of things. There have been times in my past where I have experienced more ‘typical’ forms of stress or sadness which have resulted in more ‘typical’ forms emotional outburst - but for me meltdowns are generally disconnected from levels of contentment within life / levels of ‘emotional stability’.

Some of the things that can lead to my meltdowns include:

• Overstimulation - this could be due to too much of something such as too much noise / too much touch. It’s important to note that this includes painful or pleasurable overstimulation. I can enjoy going to music gigs, or connecting with new people but it still cause an energetic build up within me that turns into a meltdown (yes being ecstatically happy and excitable can lead to a meltdown for me)

• Feeling misunderstood / feeling confused - this is probably not just connected to pure autism but perhaps more to the trauma of being autistic (which is  a whole other blog post). There are times where I cannot connect my thinking with other people’s way of perceiving and end up getting trapped in loops of misunderstanding which start to build up distress in my body. This is particularly hard when I appear to have caused someone else pain by saying or doingsomething I thought was completely uncontroversial. It’s often not always as simple as letting stuff go / writing something off as a difference of perspective for me (which is also a whole other blog post)

• Not being able to flow/ Not knowing what to do with myself  - Autistic people tend to have states of hyperfocus that can feel really enjoyable and aligned with how their brains work. When this is abruptly interrupted it can feel physically and mentally painful. In addition, we also have states of inertia where it’s hard to start the next thing we need to do, if I get trapped in this state it can start to build towards a meltdown if I don’t get space and support release that energy. 

Quite often people can get confused by how one day I might appear to have a meltdown over something like getting dressed or showering, and other days I’m completely fine. This is because for me the actual act itself is not necessarily the problem - it’s about where my brain is in terms of it’s processing state. If I’ve been overstimulated and then I try to shower it might take me a long time to get our of a state of inertia and that can then cause a physical meltdown. 

In addition, for me meltdowns are a result of built up energy. And this energy builds up at different paces depending on how your brain works and the context you are in. I might be completely fine attending a concert of my favourite band on my own because the songs are familiar and being alone reduces the risk of feeling confused by a friends plans. But I might have a meltdown at another concert with a friend because the music and lighting is unfamiliar and perhaps it is more overstimulating as a result, and I also have to work hard to align myself to someone else’s flow for the evening. 

I often describe this as a dripping or running tap that overflows my cup. Sometimes the overstimulation or confusion is just a slow steady dripping, other times it can run quickly and flood my brain. 

Adapting to meltdowns and reducing their harmful impact 

Unless we change the entirety of society my meltdowns aren’t going to suddenly disappear. In Atypical it really irks me when the mum celebrates the fact her son hasn’t had a meltdown in a month because, at best, it simply means he’s releasing the meltdown in less painful ways, or at worst he’s suppressing the meltdowns which will likely have a bigger detrimental effect further down the line. This is why rather than trying to figure out a ‘cure’ for meltdowns, I’ve arrived at a place of accepting my meltdowns as a reality of being autistic in a world not designed for people like me - and even if the world adapted around my needs my brain still might need to do intense releases at times. 

But it’s also not sustainable or healthy for me or others around me to simply let my meltdowns wreak havoc so I wanted to share a few things my community are working on with me.

Preparing for meltdowns

By finally coming to terms with meltdowns as part of my reality I’m able to work with my partners and friends to prepare for the impact of them. 

When I’m in meltdown mode it is not as simple as deciding you need to do something to regulate when it arrives. My brain and body are no longer mine - it lashes out in ways that I have no control over, and I can lose my memory almost entirely. Which is why we developed strategies such as having a ‘Brain Melt’ playlist I can listen to on repeat, or a box full of goodies and reminders that can give me options for activities (though I’m still trying to work out how to remember the box exists when I’m on my own and having a meltdown). 

One of my partners has also written me a letter to read when he isn’t there or struggles to be present within a meltdown. And I’m building up the amount of people that understand the intricacies of my meltdowns so I can return to others for co-regulation when I can’t move out of the meltdown state on my own. 

I’m still learning how to structure my life in a more flexible way that enables me to feel confident to cancel social or work plans as I can feel a meltdown building but I’m not there yet with anyone but my closest connections, plus I’m still processing an immense amount of grief around the idea that I have to make space for meltdowns in this way. 

Responding to the warning signs 

I’ve noticed recently that if we can catch the early warning signs we can do things to plateau my energetic build up, but despite a lot of attention paid to this we have also gotten it wrong many times and ended up simply delaying the meltdown because we haven’t created space for me to release.

One of the warning signs for me is what I call ‘broken glass brain’. My thinking starts to fragment  and often in a bid to explain the intense pain within my brain I will start to express anxious thoughts about core parts of me or my community that can be quite contradictory to how I usually feel. In it’s extreme this can become a form of paranoia - where my brain is in so much pain and confusion that my I begin to rationalise that experience by presuming that others are intentionally confusing me or fear around whether they care for me, or by turning in on myself and pointing out the parts of me that deserve to feel that way. 

And this can seemingly come out of the blue even in spaces where I feel loved and affirmed. I was recently at a queer bar with a good friend of mine, dancing away, when suddenly the music, space and all the new faces became unbearable. All it was was a form of overstimulation, but in that moment my brain wants to give me more ‘rational’ reasons for feeling that way and floods me with anxious thoughts. 

At this point many people will want to reassure me around my anxieties, which doesn’t work because the brewing meltdown was never about those anxieties - it was about energy build up that needs to be released physically. Instead when partners or friends recognises these warning signs they might squeeze my arms repeatedly to release the energy build up, suggest I go outside for a walk or rock with me back and forth with my headphones on. 

But while these acts can help lessen the effects of the meltdown I’ve found I need to do a lot more to take me right back down to a regulated state that can be sustained. Quite often this can be hard because it will likely involve cancelling social plans or work plans and spending a day decompressing / eating well / exercising etc if I want to avoid the meltdown building back up again. 

Avoiding worsening the meltdown

There are many ways that I and others have responded to my meltdowns in the past that have actually elongated them and exacerbated the harmful nature of them. And some of the examples of this directly link to the causes of meltdowns - by which I mean we can sometimes respond with things that were actually part of what caused the meltdown in the first instance.

For example, if feeling misunderstood can cause me to have a meltdown then the experience of someone being confused by meltdown will just make it worse. Or if make myself hold in my outbursts it’s a very explicit example of not being able to flow and therefore I get more stuck within the meltdown.

I also require others to shield me from unnecessary stimulation because when I’m not yet melting down I often overestimate my threshold. One of the most beautiful acts one of my partners did before either of us really understood me as autistic was that he took his noise cancelling headphones off and simply plopped them on my ears when we were on a busy tube because he could see me starting to get overwhelmed.

Giving in to a meltdown 

Sometimes no matter how much I look after my physical and mental health a meltdown will arise as a result of something unexpected. And I’m learning that feeling less embarrassed about how my meltdowns look to other people enables me to express them more quickly and safely, and other people can help with this too. 

Once I’ve started to fall into a head-banging space now one of my partners will often put his whole body weight on me if we are in a safe space to do so, or squeeze me with his whole body to keep me contained. The strength of him against me releases my physical sensations and I can sometimes almost ‘come to’ as if I’m an entirely new person that has stepped into my body. 

Another thing I’ve found once the meltdown has arrived is that I get complete time-blindness. I feel like I’ve been stuck in that sensation forever, that it will never pass. It’s why my meltdowns in the past have been known to turn into suicidal ideation, which can be really scary for someone that thought I was absolutely loving life just yesterday - because I was and still am, it’s just that something has overstimulated me and now I’ve lost all sense of reality in a way that I feel will never end. 

I’ve recently bought myself a visible timer which I’m going to use as I let out my meltdowns to enable me to know not to panic and that it will pass. I also find listening to music helps me to understand that it’s just a song or two until the feeling fades. 

After a meltdown 

Meltdowns are exhausting for everyone involved. Though quite often I find I personally spring back from meltdowns feeling more alive / focussed / capable than many people expect. Again this is because it isn’t a response to a form of depression or anything that is emotionally weighing on me on a daily basis. It is the energetic release that comes with a meltdown that frees up my brain to function again. 

So in the early days I would have recovered fairly rapidly, but my partner who had witnessed all of the harm would feel exhausted and confused. I’ve been learning to show care for myself and others in this aftermath rather than berating myself for causing inconvenience or pain to others. 

I also have times where multiple meltdowns can happen within a single week, so even though I come out the other side of the meltdown feeling much better I need to remind myself to take it slow and keep negative stimulation to minimum to avoid slipping into another meltdown soon after.

The other thing that occurs for me is I will lose my memory of most of the detail of a meltdown. If I’ve hurt myself during the meltdown I might forget why my head or hand is hurting, or if I’ve said anything during a meltdown it’s likely I won’t remember that either. My partner and counsellor both play a role in helping me to retrace my steps and understand what was going on for me so that I’m able to continue to develop my strategies for dealing with meltdowns going forward. 

The upsides of meltdowns

The reality is I experience meltdowns as a result of feeling the world very intensely. And this shows up in joyful euphoric ways as much as it shows up in painful ways. The other side of the way energy builds and fragments my brain, is the same process that occurs when energy builds in a way that creates magnificent creative connections within my brain. The way my body responds with losing all sense of time and having very physical outbursts, is the same process that is occurring when I have the most ecstatic mind-bending orgasms or whole body responses to beautifully stimulating food, touch or music. 

In addition meltdowns are a very visceral way for my brain and body to speak to me about what I need and should be paying attention to. The majority of humankind are so cut off from their somatic processing that they can be completely oblivious to the perpetual harm they are inflicting on themselves and that the system is inflicting on them. My meltdowns might be hard to navigate within a system that only values certain ways of existing / certain ways of communicating and expressing / certain forms of productivity, but it keeps me grounded in who I am and acts as a marker for the ways the system is in conflict with that… giving me an opportunity to be deeply conscious of the life I’m building and why that’s important and meaningful to me.

Travelling through time

“The past and the future lives inside the present’s energy
So show a little tenderness now and love flows endlessly
Time is on a loop like the sun, that’s it’s destiny” - Riz Ahmed

Time is not linear. There have been many moments when I have been shown that but wasnt entirely sure because my perception gets warped a lot. For much of my adult life I have experienced what I called "broken glass brain" on a regular basis where all of a sudden the reality of life would overwhelm me and my thinking would shatter into a thousand pieces. Sometimes it would feel like each of those pieces could hang there in the air in slow motion, while my human vessel panics frantically and cuts myself on the sharp edges. Until eventually a few days later, as if by magic, the pieces glue themselves together again just as fast as they'd shattered. 

These days I understand this to be an autistic meltdown. It is painfully excruciating and scary. The world (and time) as we know it completely disappears from view. But I realise now that what underpins these moments and sensations is the same thing that underpins the many beautiful mindblowing moments I've had during connection building, creative activities or sex where my brain explodes and time stands still, speeds up or goes on forever. In each of these moments, the painful or the ecstatic ones, I believe what I am experiencing is both infinity and nothingness. Its almost like this world disintegrates and my consciousness is floating around in the dimension above us.

And in these moments it's as if my past or future selves can pass messages to me. Many of us are well versed in communicating with our past selves - for lots of us they still exist as visibly as the person in the mirror. The fear and pain that I carry from the past is present constantly, the teenager or child that came before can speak through me whenever they choose. As traumatised beings we are rarely relating with the person right in front of us.

But the future is different. Many of us don't believe people can see the future, let alone speak to it, but when I first experienced the depth of my connection with my partner I realised we are swimming in it right now. 

When I simultaneously and suddenly fell in love with my anchor partner there was a moment where it felt like I saw and experienced every single layer of our existence all at once. Initially I believed the sensation was a signal of some forms of past lives. As if my cosmic being had been searching for this through past eras and other dimensions. As if we had known each other for a millenia on a cellular level. What I have come to believe now though, as I unlock more wisdom about the way time moves, is that in that moment I saw the entire universe forever. 

As I think back to that moment the closest way I can describe it is through the metaphor of a button switch for a floor lamp in a darkened room. Its as if my foot pressed momentarily on that button and it lit up everything in a fraction of a second. What I saw during that illumination was my fate. 

My fate to be loved wholly and purely, and from that point onwards to forever be seeking to connect with that love no matter what separates us in the years, universes and dimensions to come. Perhaps I will be stuck in an endless timeloop, replaying and re-exploring the depth and beauty of this love. If that is the case I am at peace and content. I am even content with the death or loss of the people I love as a result. When me and my partner had sex the other day it felt as if my future self had travelled back into my body to experience every layer of the person the other version of me was presently grieving many decades into the future. Knowing I did not need to fear the potential loss of the love of my life was profound. Knowing that our love and experiences exist infinitely - regardless of the direction we travel through time. 

Or perhaps time is not cyclical either, but instead concurrent. And with that I could reach through the expanses of time to the ghost of my grandma, or my child as an adult, and connect and settle our souls. If this is the case I can learn to stretch out through time, reaching into the past to tell my wounded self that this love is here to stay, or my future self that I am safe and I am home.

As I hone my ability to travel through time, I discover that my broken glass brain is more a signal that I’m not in alignment with where I’m supposed to me. And as I learn to follow my instincts I am finding I can access love, connection, reassurance beyond imagination. The other day I stood on the steps of a random hotel in Amsterdam, waiting for a friend to get a taxi home, and my soul travelled into the future and felt as if I was remembering a deep sense of gratitude for the evening we had shared. What a powerful feeling to know you are exactly where you are meant to be.

Finding deep pleasure in food could transform our society

Realising the depth of the pleasure, eroticism and sensuality that can exist within most of your daily life has helped me develop a better relationship with myself, other people and the world around me.

Sex is no longer about instant gratification, and neither is food. Food has always bought me joy in some form, but these days it is something radically different to what it was when I was younger. In the same way I've spoken before about there being sex, and then sex, there’s food and then there’s food.

From money to energy

When I was a child my mum, due her experiences of poverty, devised a game to help us be thrifty with our food. We'd each be given a pound and told to find the equivalent of a whole meal in the supermarket for the cost - tinned beans, cheap bread and Tesco value jam tarts were always my top pics because I LOVED beans on toast.

This was both an empowering and joyful way to help us navigate rising food prices as we got older. And by the time I was living in London on minimum wage it meant I could whip up a good meal out of basically nothing. 

My favourite healthy comfort food sourced from Pingle Farm and Tofurei - tofu, brocolli, greens, soy, ginger & garlic

But it also meant for quite some time my relationship with food was about the cheapest way of gaining some form of nutrition. And while I knew a healthy diet consisted of the basics of 5 fruit and veg, and some protein and carbs, I spent my early adult life feeling exhausted within my body. 

Over the past few years understanding my autism, gender dysphoria and exploring my sexuality has meant paying close attention to my body. And in turn that has meant paying attention to what I put into it. It unearthed for me the shattering effect gluten was having on me, and how I lacked energising minerals like iron and magnesium. Removing the former from my diet the last 6 months has in turn made me pay closer attention to the world around me. Thoughtfully seeking meals that are truly nourishing for my body energises me in a way that watching my bank balance didn't. 

That said I'm lucky to be at a point in my life where changing my mindset in this way is accessible to me. Our food system is not set up to provide affordable nourishing healthy food - I'd go as far to say our capitalist system purposefully makes low energy food as cheap as chips because it keeps workers compliant. 

Cultivating appreciation and participation

When I started cooking dinners for my family as a teenager it was transformational for me in two senses. One is that I started to pay more attention to what we were all eating and would flex my skills to respond to different people’s needs such as when my mum was dieting etc. And the second is that as an autistic person it was my way of saying “I’m here, I love you, but please leave me in peace” when we were gathering.

Me dishing up dinner for friends at a recent &Breathe gathering

This has continued into my adult life and for me it is an absolute joy to contribute to a group in this way. Cooking from scratch is a mindful activity that helps me focus my often scattered and overwhelmed brain. My brain appreciates every food item I touch (it’s one of the many reasons why I’m vegetarian because when my brain would focus in that much detail on a chicken thigh it used to make me want to vomit), and I really enjoy learning about different people’s dietary requirements and showing I care by adapting around their needs. All too often people are made to feel that they are an inconvenience when they need or want something different to others, but for me there is joy and pleasure in understanding the uniqueness of our relationship with food.

I really felt acknowledged for my connection with food and how I approach cooking when at an &Breathe gathering my friend Alvin said “I like eating your food, I can tell it’s cooked with love”. It might sound cheesy but love really is the key ingredient to ensuring our bodies stay healthy. If someone loves you, and loves the earth for the produce it generates, they cook in a way that centres that rather than for the destructive capitalist values of speedy consumption.

I think more people learning to appreciate and participate within the food system would radically improve our lives in a myriad of ways. A simple walk with my kids the other day to collect hazelnuts meant they got hours of exercise, they learnt more about each other and the land they live on, and because they had the joyful task of cracking them open its the first time either of them have enjoyed consuming nuts - an amazing source of fats, fiber, magnesium and vitamin E.

My kids picking beans at Pingle Farm

Straight from the earth

I've always been fascinated by where my food comes from but for a period of time I had to entirely forget that in order to survive living in London. I was living in a bubble whereby I'd have multiple coffees a day - probably one from Ethiopia and another from Costa Rica - followed by fruit and veg grown in Spain, Peru and Beyond. 

When I moved out of London and started to feel the weight of the climate crisis I made stressful attempts to try find food with the least air mileage in the supermarket, until one of my partners pointed out those supermarkets are still going to be importing those goods whether I buy them or not so I gave up my tiny little rebellion because it was mentally exhausting me. 

That was until I came to Wirksworth and discovered a small independent veg farm, Pingle Farm, who offer veg boxes for £15! Aside from tofu, carbs and snacks this basically makes up the bulk of our shopping. I was spending double this in supermarkets on fruit and veg, for items out of season, with less nutrition and flown thousands of miles.

When I visited Pingle the other day to volunteer and find out more about their journey as me and my partners would like to one day live communally and grow our own food, I literally sobbed as left. Seeing this beautiful space where you could feel the love emanating from the soil, and where everything you could possibly need to live was there right in front of me, just made the horror of the food system crash down on me like a tonne of bricks. We are being gaslit by society. There is enough land for everyone in the UK to have a more direct connection with their food, and to be able to grow most of what we need right on our doorsteps. 

Aside from the global impact changing our growing and consumption habits would have the sheer amount of joy and pleasure I have had these past few weeks from picking the food that lands in mine and my neighbours veg boxes and from being creative with veg that is available has been transformational for my body and soul. The other day I went foraging with my closest friend, and when I came back all electrified my partner pointed out the many layers of delight I'd had from one afternoon of wandering in the sunshine, nibbling nuts and berries, and discovering the nutrients available to me from herbs like Mugwort growing everywhere on UK path ways. It would be faster to buy nuts and berries from the shop, but the time saved is no way near as valuable as the level of joy I gained from that afternoon.

Time is the real luxury in this system

There’s too much rhetoric on all sides shaming people with the idea that they either shouldn’t be struggling with food poverty, or they shouldn’t be struggling with healthy sustainable diets. Middle-class right wingers retort ridiculous things like “A jacket potato and beans only costs 70p to make” in response to people campaigning against food prices, while some Middle-class lefties scoff at those that eat Mcdonalds, and environmentalists can behave like whining martyrs when it comes to their food and farming activism.

I still cave sometimes and my kids Mcdonalds after a long day of them bickering, or when they are in a phase of refusing to eat something I feel is good for them. I didn’t own a microwave until very recently so there’s no way you would’ve caught me cooking jacket potato for kids who had gone into ‘hangry’ mode before I’d had a chance to get dinner on after a stressful day at work. And heck no I’m not a martyr for the sustainability-related stuff I get to do, it’s a fucking privilege that I get to do such life-affirming work when we live in a system that is sapping us all dry.

While I love that there are more and more simple guides for healthy and affordable eating, and that more community farms are cropping up and inviting people to volunteer, that’s simply not where most people are at when they are stuck in the daily grind of capitalism and the isolation of nuclear families.

My capacity for a more sustainable and enjoyable relationship with food has come from an entire shift in my lifestyle. My outgoings have reduced due to being able to move out of the city, my approach to work is less time intensive as a freelancer, my partner and I live and work more and more collectively with others every day, and my kids are raised by multiple households due to co-parenting with my ex. Some of these shifts have been painful and the process caused me to have less time and money for good food at times, but having the confidence to jump headfirst into this shift to an entirely different way of living comes from having both a depth of love and support from the people around me and knowing it’s the only way we’ll escape a system that is burning us to the ground.

If we want people to engage in and demand healthy sustainable forms of food production and consumption we first need to meet them with love and care for all layers of their lives, value their time and open their world to the energising forces of pleasure. Pleasure doesn’t happen as a result of shame, and time can’t be magically created when your time is owned by capitalist corporations.

Seeing energy and the things unsaid

My partner went out on a date the other night and I absolutely loved every moment apart from one bit when I tried to visualise him enjoying himself with the person but had no visual reference map for creating this understanding in my head. In that one moment a huge shot of anxiety rushed through me, and started to send me on a spiral of fear. My brain felt it and filled in the gaps with intrusive thoughts. 

This happens a lot to me in all sorts of contexts, but it usually happens over the phone or in the presence of someone else, and as a result it has often been misinterpreted by others as anxious attachment or jealousy when it’s completed unrelated to that. (Don't get me wrong I do a lot of work around my anxious attachment and my jealousy so I'm not saying I don't have those things) In turn that misinterpretation leads to intense meltdowns because as an autistic person I am traumatised by all the times I haven't felt able to communicate my experiences to others / when people haven't understand the nuance of my thoughts and feelings.  

But for the first time I was able to pause in the moment and say to my brain "that's interesting that you need a visual reference to map this experience onto, why is that". And a FLOOD of memories and knowledge came rushing back which helped me to understand the beautiful layer of the world that my autistic brain operates within. 

Seeing connection or disconnection

Since I was young I have been confused by secrecy surrounding love and desire, or the opposite of that resentment and distance. Everything seemed to be unnecessarily clouded with pretence and I could never work out why, and it was that that creates anxiety within my brain. A simple example is that I had a boyfriend as a teenager who quite blatantly fancied one of my best friends. I never had a problem with the fancying, it was the fact they couldn't seem to speak it out loud or acknowledge it when it was right there in front of us and I didn't understand why it was something that needed to be silenced or obscured. When he eventually slept with her a few years later I wasn't hurt by the sex, I was hurt by the fact I didn't know or understand his reasons for keeping it secret, that he was actively trying to obscure something I could *literally* see and touch.

And the latter is where I now understand my experience of connection and disconnection is different from many. I literally see it and sense it in ways others do not. Not in a "bright visual colours dancing across the room" kind of way. But in a half physical, half visual kind of sense.

 Sometimes I see two people interact and there's so much visual buzz and sensations around them due to their connection that I either get buoyed by that energy and can join in on the flow, or I get sensorily overwhelmed and can't keep up with the "standard" stuff I'm meant to pay attention to like words and body language AND the giant whirring energy surrounding the pair. 

 Other times I can enter a room of full pain and resentment and the underlying energy makes it difficult for me to breathe or to look at people. Some people in that room think I'm the weird one for not being able to socialise or maintain eye contact, but I can't understand what game everyone is playing cos the "elephant" is very literally right in front of our faces. It is a physical and visual experience for me, it is not a metaphor. 

When people don't see what I see

What I realise now is that in many instances people aren't actively trying to obscure the truth or deny my experience - they simply don't see it. 

What this means is that I'm there either pointing something out that takes them by surprise (which some people absolutely love and others get defensive around) or I'm waiting for them to acknowledge things that they simply don't connect with. And when that doesn't happen I get anxious because I then feel like I'm existing in a more confusing space than I realised. 

Just to be clear I'm not talking about people having "different points of view" or "different beliefs". I've always enjoyed exploring those differences with others and enjoy it when other people's thoughts and interpretations challenge my thoughts and interpretations. What I'm talking about is a very real, physical and visual, type of sense and experience around the layer of energy that connects or disconnects. 

Why having no visual or physical map is a challenge 

This brings me back to my starting place. One of the ways I have coped with the energy that surrounds connection is by grounding it in more "common" senses. When I first dated my girlfriend, going out in public was a challenge because she didn't like physical touch. The only way for me to not be overwhelmed by the energy between, us combined with the energy in a busy restaurant, is to be physically touching the people my connection is with. Otherwise the energy from other connections becomes distracting or I become overwhelmed by the situation. 

In addition, it's why going to familiar places is useful when I don't know what the energy dynamic is going to be. If I have to navigate seeing all of this unspoken energy AND navigate a strange environment it's a challenge. If my sense of place is secure then I can engage with the energy layer easily. 

When me and my partner were long distance living we had this huge gigantic energy connection which spanned across my world and his world. I could feel that connection running all through me and around me. But it was so big that in order to manage and cope with it I needed to visualise it alongside the physical world. But sometimes that would come up against a barrier. I didn't know what much of his physical world looked like. So when we were talking on the phone in his living room and his daughter and her mum were in the next room I couldnt ground our connection or their connections in physical space. They were all just floating there filling my senses. I had no visual map to place the connections on. And I had no way of touching him to be able to focus on the words he was saying. 

While my partner and I do lots of things like sending each other videos of the spaces we are in before we speak or text, this isn't always a viable option (I wasn't going to to get him to send me pictures of his date for instance). 

I don't yet know the answers for managing these scenarios where my experiences of connection need grounding. Or where I'm feeling and navigating the sense of energy that others aren't. But what I know is that having this clearer understanding around how I experience the world will enable me to be less anxious.

When I'm overwhelmed by something that others don't see, or overwhelmed by trying to navigate the many sensory layers I experience without having a visual map to place them on, I now have the words to explain to parts of my brain or to other humans that “I'm not a weirdo, I just experience things differently and that's okay”. And that it’s not that people are always keeping things secret from me or trying to ignore the obvious energy layer that’s present, it's that I get to know and experience these beautiful layers before others even know they exist.

7 things I've done this week that you might not associate with autism

Trigger warning: This post does mention suicidality and mental health. However it may give you a fresh lens on what it means to experience feelings of suicidality.

I’ve had many highs and lows as I’ve started to understand myself as autistic over the last year. But this week I had some profound realisations about what my brain can do when it’s allowed to operate in the way it was meant to, and the ways my body reacts when it’s not allowed to operate in the way it needs to. I’d love to hear if any of these resonate with other autistic or allistic people!

1. Drawn what I was trying to say

Sometimes I feel like the English language was not made for Autistic processing or experiences. I can often feel like I'm both in constant translation mode and that my words come out faster than I've processed what I actually mean.

When I draw scenarios, feelings or ideas it offers more nuance around what I'm actually trying to say. It tends to communicate my intentions and experiences more realistically and clearly. And it is far more soothing and reassuring for me than talking.

2. Looked up at an actual visual thought

Sometimes my face does ‘weird’ things that in the past people have been confused or disconcerted by. What this has meant is that I often mask my autistic tendencies so as not to make other people feel uncomfortable, and in turn that limits the way my brain works naturally and makes me worse at conversation/problem-solving/brainstorming etc. In contrast I love working with people like my partner and those I connect with via Collaborative Future because I mask less in conversations. And it meant that as myself and a co-facilitor, Joel, were planning a workshop this week I was able to freely say “one second”, physically look up at the intricate visual thought that was going on in my head and then communicate with more clarity on how we should run an exercise within the session.

3. Asked to be squeezed

I LOVE being squeezed. Not only does it regulate me in times of stress but it also gives me huge waves of sensory euphoria (sometimes I reckon my body enjoys squeezing more than most ‘normal’ people enjoy orgasms). Both my partners now know instinctively how to squeeze my arms when I’m feeling rejected, how to squeeze my body when I’m feeling overwhelmed, how to squeeze my head when I’m all in a muddle and it has absolutely transformed my daily life and my capacity to keep going with things.

4. Made eye contact

For years the stereotype of autistic people not making eye contact stopped me from ever actively exploring autism as an explanation for my experience of the world. However there are two completely opposing situations where I make eye contact regularly. The first is when I’m feeling deeply uncomfortable and like I need to look as “normal” as possible in order to get through a situation and where I need to be hyper aware of people’s facial expressions because I don’t yet know what all of someone’s behaviours/intonation mean. This happened at a kids birthday party this week and I was super overwhelmed by the end of it.

The second is when I’m deeply comfortable with someone and I can get lost in them or lost with them. If I know someone so well (and it can take a good year or so of continuous interaction to get to this point - and continuous questioning of what their facial expressions mean) then I can easily sit and look at them as we talk and enjoy losing the need to think about either of our faces and just hear the words.

5. Talked avidly about the intricacies of Music

One of my most enjoyable and energising moments this week was when my partner asked me how a piece of music would’ve been recorded. I could instantly visualise the recording studio that I used to go in when I was studying Music Technology as a teenager and could imagine all of the layers building up with the piece we were listening too. I also really enjoyed it when he asked me to make a very specific type of playlist for his gym sessions because I could explore a specific genre that I hadn’t been familiar with for a while, along with a direction and purpose that helped me narrow down what songs to include.

Understanding the importance of autistic special interests has been profound for me. There have been whole chunks of my life when I’ve ‘lost’ my special interests because others have seen it as unimportant or because work/relationships/children have taken over but spending a short amount of regular time building my energy & exhilaration in this way can have profoundly positive affects on my brain.

6. Been suicidal

On Monday I was seemingly suicidal. Even though I’m technically the happiest I've ever been. Living in an allistic world with an autistic mind is draining and confusing and has, I now realise, caused me an immense amount of cPTSD as a result. (I recently joked with my partner to share something "normal" and I'll tell them why it's triggering) I also wasn't able manage the signs of impending burnout and overload that were occuring for me so eventually they had to explode out of my skin and brain in a very vocal and physical way.

While someone with allistic communication and "typical" ways of rationalising situations would've seen no reason for feelings of suicidality in this moment, the physical pain and mental burden that I experience at these times can mean the only way of communicating the immenseness and intensity of it is through the idea of death and the act of self-harm.

This may sound strange to some but my partner and I actually concluded with our counsellor that in moments like that I need to be acknowledged (i.e. Yes that’s understandable that you feel that way) and then left to my own devices so that I can be comfortable doing whatever physical stimming I need to do. And in many cases it has been known to pass as rapidly as it came on. In the past this switch has left some people confused: how I can be suicidal one moment, causing them absolute devastation and out enjoying myself the next. It’s because I’m not depressed. I’ve had an intense autistic meltdown where those are the only words that come close to describing what I’m experiencing in that very moment, but once it’s been allowed to be released my body and brain feels liberated.

7. explored hundreds of pasts & futures in 15 minutes

I misheard something my partner said to me this week as a rejection of us and our life together, and as a result my brain spent time rapidly processing everything I’ve ever experienced in the past that was connected to that one sentence, and every possible route through ‘what next’ in order to problem-solve myself out of the situation. I only noticed the sheer amount of experiences and the level of detail that my brain thought through on response to this one sentence because it turned out I’d misheard and we had to go back and redo the conversation in order to unravel the image I’d built up in my head. Now we all do this at an unconscious level. The difference I find with autism (and likely trauma) is that it is happening at a conscious level and I can sometimes feel like I’m literally experiencing all of those past and future scenarios all at once. It was so intense that it rendered me mute. What it made me realise is that part of the reason I probably struggle with some “executive functioning” and social interactions is because the level at which my conscious brain is operating is off the chart. It’s processing so many layers all the time - which is great in some scenarios (like spotting the intricate team dynamics in my work around DEI & organisational culture) and awful at other times when my partner thought we were just going to have a basic conversation.