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What grief has taught me about my responsibility to the world

“To be is to be perceived, and so to know thyself is only possible through the eyes of the other. The nature of our immortal lives is in the consequences of our words and deeds, that go on and are pushing themselves throughout all time.

Our lives are not our own, from womb to tomb, we are bound to others, past and present, and by each crime and every kindness, we birth our future.”

Revelation of Sonmi 451, Cloud Atlas by David Mitchell

This quote in itself has become somewhat of a substitute for traditional religion for me. It speaks to me, not just because it is a part of my favourite novel and film, but because in my life, I have experienced a great deal of loss and grief.


It’s a heavy word, it doesn’t roll off of the tongue naturally. It feels uncomfortable to say.

Grief is the result of loss, a natural result of tragic circumstances. Those of us who have experienced grief will often tell you; it never goes away, it becomes a part of you. You make space for it in your heart, you learn to live alongside it, carrying it with you throughout life. For a long time I hated my grief, but over the years it has taught me important lessons about my place in the world, and even the universe.

Grief is our proof that ones we loved and lost once existed. As painful as it is in the early days, it reminds us of the love we once had. Grief is unique, it adapts to the person we have lost. It ensures that no one is ever truly lost.

Grief exists because every person who exists makes a space for themselves in the world. We are a pebble in the water, and our words and actions ripple out, forever changing the universe. We are connected to each other, and by merely existing we have an irrevocable effect on the universe.

This realisation taught me that I must use my limited time on this earth to do good work. The world is a broken place, so I will use my time to help the world feel a little less broken. I want the ripples that my actions cause to be a force for good. When I am gone, I want to be sure that the legacy of my actions is one of positivity and light. I owe this to the world for simply existing, and I owe it to the people that will grieve me when I am gone.

Those early days of grief can be incredibly painful, but listen to them. Embrace them, allow them a place in your life, and learn from them. Each of us changes the world, we are each drops in a limitless ocean that could not exist without us. The people we grieve may not be here in person, but the result of their existence will ripple through the universe eternally.

Whether you believe in an afterlife or not, no one is ever truly gone.

Is it okay not to be okay?

In recent years there has been a significant increase in the acceptance and removal of stigma surrounding mental health conditions. Let me start by saying that this is vital. It is important that those of us experiencing mental health issues feel safe to discuss their experiences and reach out for support.

The reason I am asking the title question is this; do toxic positivity and negligent governments normalise the experience or perhaps the ignorance of suffering?

I have seen this a lot on social media. People will reach out and admit that they are suffering, and they will be met with a tirade of #ItsOkayToNotBeOkay responses. While on the surface this may appear supportive and accepting, it does very little for the person who is experiencing a crisis.

Yes, it IS okay to talk about not being okay, but it is never okay to suffer. I don’t mean that people should be penalised and stigmatised for their suffering, but we must be careful not to just accept it. Rather than it being okay to not be okay, should we not be working towards a world in which suffering is a thing of the past?

That’s not to be naive, I understand that mental health conditions occur for a wide range of reasons, and complete elimination of these conditions may not be possible, but should we not be working to create a world where people receive adequate support for their mental health? Reaching out to friends is a beautiful thing, but is it not concerning when the only outreach a person has are the people on their Facebook profile?

#ItsOkayNotToBeOkay is, in reality, the result of a world that operates through crisis-driven intervention, leaving those deemed “not suffering enough” with no where to turn but the internet. This is not okay. Everyone deserves adequate support for their psychological wellbeing. So when I say we shouldn’t normalise suffering, I mean we shouldn’t normalise a world where people are expected to suffer until they are in crisis.

We as advocates must now work to ensure that each country lives up to it’s duty of care, and correctly funds and implements mental health support services for all of it’s citizens. Until that work is done, and done well, it will never be okay not to be okay.

Diagnosis and the solipsistic conundrum

Solipsism is the idea that only the self can be known. It is impossible to know the world through the eyes of another. What you see as red, I may see as your blue. Objective reality is that which we have all agreed on, based on discussion of our own subjective realities. How then is it reasonable that diagnostic criteria is built upon the expertise of those who are not autistic.

I know what you are going to say; diagnostic criteria are based on observation of autistic people. My response to that would be that you can observe my behaviour without having any knowledge of why I am behaving that way.

So if it is true that only the self can be known with absolute certainty, would it not make sense that autistic people themselves be involved in the creation of diagnostic criteria? For as long as I have been advocating for autistics, I have been very aware that female/AFAB, BIPOC, and other multiply marginalised people have a different experience of what it is to be autistic than the white, male, children that the diagnostic criteria is based on.

Should we not be giving a voice to all autistic experience, and building an objective diagnostic criteria out of the subjective experiences of #AllAutistics?

Currently, many are denied the privilege of a formal diagnosis because they do not meet an outdated stereotype. The people who designed the diagnostic criteria did so through observation of outward behaviour, and very little is considered about the inner workings of the autistic mind.

I myself was denied diagnosis throughout my childhood because of these stereotypes, and as an adult, I was denied diagnosis because I was an addict and “autistic people can’t be addicts” according to many of the professionals who worked with me. I was privileged to receive a diagnosis at age 26, 7 months after achieving sobriety.

We are all experts on our own inner-selves. When diagnostic criteria begins to reflect that self-expertise, I believe we will see more people receive a diagnosis and access the support they need. We live in a world where (of diagnosed autistics) the suicide rate is nine times higher than the general population, can you imagine what that statistic must look like for the countless undiagnosed autistics among us?

As a community, we must continue to document our experiences, and share them with as many professionals as possible. The nature of self-advocacy is that we do not just benefit ourselves, but those who come after us also. It’s 2020, and the time for the stereotypes of the past is gone. Now is the time for all of us to be heard, and not just the few identified by ancient criteria.

Fighting the void: What is autistic burnout?

In the online autistic community, it is not uncommon to hear about something called “burnout”. This phenomenon is, sadly, quite common, and probably a result of trying to exist in a world that for so many of us is quite frankly hostile.

But what is burnout? What follows is an account of my most recent tangle with this beast.

Firstly, my experience of burnout may be different from that of another autistic. I have a number of complex mental health issues that compound the experience. Burnout also involves more than psychological phenomenon, physical pain and illness can become an issue when one is in burnout.

The first sign that I was entering burnout was small. I started to wake up later and later into the day. I’m not the earliest riser, but i soon found myself waking up at 3pm or later. I stopped being able to perform simple self care tasks, suddenly showering was impossible and I was lucky to be able to get into the shower once every three days.

Housework seemed to be piling up. The basic requirements of running a house were now an insurmountable task. Washing the dishes would leave me unable to do anymore than sit and stare into space for hours.

My mental health took a nose dive. Where once I was an upbeat and excitable individual, I was now utterly anhedonic, unable to find joy in even the simplest of things. At this point I started to experience very intense suicidal thoughts.

The actual feeling is harder to describe, but I will do my best. When asked to picture my feelings, I realised that all I could picture was a void. This void loomed over me, threatening to swallow me. I felt as if I was on the brink of being lost to oblivion. I could barely make the walk from my bedroom to the living room, it felt as though there was nothing left inside of me.

Had I not been so exhausted, I would have been terrified. It felt as though the real me was slipping away.

When you are in burnout, it can feel as though it will never end. It was like being in the centre of the earth, with all the weight of the world pushing down on me.

There were two things that helped pull me through my burnout. People around me picked up the jobs I simply didn’t have the spoons for. I had to take time for myself. I also had to tackle the mental health issues, and for me, this looked like having my medication reviewed by my psychiatrist. A minor change to my medication dramatically improved my depressive symptoms and low mood, allowing me space to do things that i enjoyed, replenishing spoons in the process.

Burnout is an overwhelming and scary experience. However, with the right support, it is possible to come out the other side. When we experience Burnout, it is vital that we look at what was happening in the lead up, and identify the things that led to it.

If you are experiencing burnout now, hang in there. Be kind to yourself, and take steps to protect your mental health. Burnout is not a permanent state, but it is not something you can think yourself out of. It is the state we enter when we simply have no more energy to expend on anything.

Things can and do get better.

“I am no longer that person”: An autistic addicts journey to self-forgiveness

Many people praise me for my kindness, and ability to engage in open and honest communication in the name of helping people. These days i do my best to be good at these things, but there was once a time when I was not a good person.

Let me be completely honest with you. I was one of those autistics that many considered gifted and intelligent (under those particularly problematic IQ tests at least, anyway). So when I found myself in the world of addiction, it created a perfect storm for me to be a terrible person.

As an autistic addict, I lied, manipulated, and abused my way through life. Nothing could come between me and the drugs, and if something did, I bulldozed it out of my path. There were no limits to the pain I would cause in the name of my own survival.


It’s a strange word to me, for me it is reminiscent of a world in which I do not fit. I scraped by while surviving, absent-mindedly damaging the world in doing so.

When I first achieved sobriety, I started becoming very aware of the harm I had done. So aware in fact, that I could barely cope with the guilt. For a good year or two after finding sobriety I was consumed by the horror of my own behaviour. Even now, at over 4 years of sobriety, I feel my insides twist up when I think of the things i have done.

I was not authentic to my autistic self. For so many years I felt as though I had betrayed the ones I loved.

However, in the last year, I have come to a new realisation. The David who did those terrible things in the name of survival, is not the David who exists now. When I achieved sobriety, the old David died, I was reborn into a new life, and like any newborn, I had to experience growing pains.

If you are new to sobriety, it is likely that you are experiencing something similar. I want you to know that these growing pains will subside, and you will mature into your new life. Create a life where it is easier to be the new you. The old you is gone, make reparations for your old ways, and move forwards.

I am committed to using this new life to fix what I helped break in my past. I want the world to feel a little less broken.

“Don’t look back, you’re not going that way” as the old saying goes.

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