The language of addiction through the lens of the autistic community

Anyone who has spent time withing the online autistic community will be aware that there are particular ways that we as autistics prefer to talk about autism. Identity-first language is vastly preferred by the majority, with many rejecting the phrase “person with autism” while opting for “autistic person”.

These well documented preferences have had a significant impact on how I talk about myself as an addict also. I have different ways of talking about addiction depending on what stage of recovery I am talking about.

I myself am almost four and a half years sober as of writing this, and consider myself to be fairly confident in my recovery. I have overcome the initial stages of stopping using, and learnt important techniques to keep myself from returning to using. While I am at this stage, I am aware that I am just a few bad decisions away from using again if I am not strict with myself. For this reason, I refer to myself as an ADDICT. Take note of the identity-first language. I am no longer “suffering from addiction” as many would say. Instead I acknowledge that addiction never goes away, but the core experience of active addiction can end.

When I refer to people prior to entering the sobriety stage of recovery, I usually say “experiencing addiction”. The person is still experiencing the negative effects of actively using. I tend to shy away from the word “suffering” because people who are in active addiction do not need the word “suffering” to remind them of where they are at. Addicts know they are suffering when using, and using the word does nothing for them, and perhaps further stigmatises the experience of addiction by turning it into a pity party.

Let me tell you something as an addict. I don’t need your pity. Empathy, yes. Pity, no.

Addict can also be used as an umbrella term to refer to anyone with a history of addiction. This is because, much like autism, addiction is a core part of our identities. Those of us who have experienced addiction know that it never goes away. It is something that we carry with us throughout the rest of our lives. Addiction is more than just using drink and drugs, it is a particular way of thinking and behaving that leads us to compulsively repeat actions that bring us good feelings or relief.

Addiction is so much more than the medical model. It is a series of adaptive changes that happen within a persons mind. It comes with a lot of negative behaviours, but also creates people who are a perfect fit for altruistic work. As an addict in recovery, I have been able to turn my compulsive behaviours into something that I call “radical kindness”. With radical kindness, you take the single minded drive to use, and exchange it with a focus on helping others. This has been key to my recovery.

Being autistic has taught me that the way we talk about ourselves, directly influences our perception of self, and the perceived energy that we put out into the world. When we focus only on suffering and negative behaviours, we paint a negative picture of ourselves in our mind. There is no need to other ourselves by using the pathologised terminology that the medical community and the media has used to discuss addiction for decades.

Being autistic and an addict has created a lot of challenges for me, but it helped me settle on one immutable goal that I will focus on for the rest of my life; help the world feel a little less broken. Addiction is a selfish state, always seeking personal relief at any cost. For that reason, we must focus on others in order to maintain recovery. Altruism is the gift that sobriety has given me, and I intend to make good use of it.

Rediscovering my boundaries after achieving sobriety

Drugs and alcohol are endemic to our society. It’s impossible to go out socially without coming across them. There were a lot of complex reasons for why I used drugs and alcohol, but a big one was that they helped me feel more comfortable in social situations.

As an autistic person, I have never found socialising easy, at least not in the way that my neurotypical peers have. I am an awkward and anxious person, constantly second guessing myself and working hard to maintain a neurotypical mask. Maintaining that mask has been a heavy burden, which is part of why drugs and alcohol appealed to me.

When I popped a pill or snorted a line, I was the same as the others around me. Suddenly I was in a world where people interacted with me in the same way that they did everyone else. My anxiety was easier to cope with, and I could flit from situation to situation in a social setting.

The problem was, that my mind and body had boundaries, and when I was using, I did not recognise those boundaries. I would constantly push myself beyond what I had spoons for. The resulting burnout would cause me to use more drugs and alcohol just to cope with the feelings of emptiness. I was trying to pour from an empty cup.

When I achieved sobriety, I had to work to reestablish my boundaries. I no longer had my chemical fix to help me cope with a world that was, quite frankly, hostile to people with my neurotype.

I was still able to enjoy socialising with my friends and family, but at a certain point I would just hit a wall. In the space of seconds I would go from happy and laughing, to withdrawn and unable to speak. Often I would find myself needing to escape situations, feeling panic creep up on me. Sometimes I would take myself off to the toilets and have a meltdown out of sight of those I was socialising with.

I had to learn what my limits were. I had to anticipate that moment when my spoons would run out, and listen to my mind when it said it was time for me to go home.

This wasn’t easy. I wanted so much to be like everyone else. It took me some time after achieving sobriety to find a place of self-acceptance. For a good two or three years I beat myself up for not being like everyone else. I would try and force myself to be like everyone else, while knowing deep in my heart that this was causing me a great deal of psychological harm.

An important part of establishing my boundaries was self-acceptance. I could not have found it without discovering the online autistic community. It seems absurd to me that no one tells you that there is a huge community of autistics, I had to discover it for myself. I suspect some may never find the community because they do not use social media.

The autistic community taught me to love who I am, that it was okay to have boundaries that were different to my allistic peers. Even more so, they taught me that it was okay to have boundaries that differed from other autistics. Suddenly I was in a world where it was okay that everybody was an individual with individual needs and strengths.

I learned that it was okay not to have the energy to maintain a neurotypical mask, and I learned that it was okay to walk away from situations before reaching the point of panic or meltdown.

I am blessed to have very supportive friends and family. They help me maintain my boundaries, and have become adept at recognising when I have met my limits, often encouraging me to go away and do what I need to do to regain those ever so elusive spoons. I can now walk away from uncomfortable situations without blaming myself. I have learned to love my own self-advocacy.

Of course, learning to respect your own boundaries is a piece of work that never ends. Our boundaries shift and change as our lives progress, and what may be reasonable on one day, may be impossible on another. I am constantly learning how to budget my energy.

Some days I still make mistakes. Even recently I have gone through burnout because I over worked myself both socially and professionally; and yes, socialising IS work. However, I have learned to accept my mistakes and learn and grow from them. I no longer attack myself for failing to meet my needs, humans are imperfect, and autistic humans are living in a hostile world that constantly works to oppress them.

If you’re new to sobriety, I want you to know that it is okay to make mistakes. Sometimes we screw up. It’s an uncomfortable fact of life, we can’t be expected to do everything perfectly. The main thing is that we do not allow those mistakes to snowball, and make us give up. Life only moves forward, so once you make that decision to embrace a more positive future, you can’t look back.

Psychosis and autism: My tenuous relationship with reality

Psychosis is a topic that (much like addiction) is rarely talked about in the autistic community. I suspect that it is more common than people care to admit; I also suspect that most in the community would not have any particular knowledge of what psychosis is besides Hollywood’s stigmatised take on the subject, and possibly what they have found on google.

The simplest answer I can give to the question “what is psychosis?” is this; psychosis is a total split from reality. When psychotic, the world is a vastly different place for the person. For me, it was a world of paranoia and persecution. I was no longer able to tell the difference between fact and fiction.

The first indication that something was wrong (for me) came when I was 18 years old. I had just moved out of home, and my three year long relationship came to an end. I started hearing disembodied voices calling my name. Very quickly they progressed to voices telling me that I couldn’t trust my friends, that they didn’t really like me and that they wanted to harm me.

For years I drowned out the voices and paranoia with a vast cocktail of illicit drugs and alcohol. The stigma attached to hearing voices was too great, I was scared to tell anyone what was going on, so I self-medicated. It started with cannabis and alcohol, and eventually I found myself heavily addicted to opioids, benzos, and spice.

The problem really came about when I achieved sobriety. I no longer had my buffer. Without the chemical crutches, the voice hearing became extremely intense. At the height of it, I was hearing multiple different voices including;

-A demonic voice that told me paranoia inducing lies about how dark forces in the world were working to harm me.

-A voice that i called “the sociopath” that would ask me to harm people.

-Two voices that never spoke directly to me, but would comment and bicker over everything I did. All day. Every day.

-There were other voices that I didn’t hear with any great regularity.

I also started to see a women in a black dress in my house. She never acted to harm me, and was not particularly threatening, but it was unsettling to say the least. Among other visual hallucinations, I would see spiders in my bed, and demons following people around. The visual hallucinations were as real as my best friend who is currently sat across the room from me.

The final nail in the coffin was the delusions. Delusions are difficult to explain. Imagine spending your entire life looking at a blue sky, but suddenly everyone is telling you it’s green. They present you with mountains of evidence that the sky is green, but all you can see is blue. The more you try to tell people the sky is blue, the more concerned they become about you.

I had many complex delusions, but the most notable ones were that I believed I was trapped in a computer simulation, that I had a microchip under my skin broadcasting my thoughts, and that my family had been replaced by imposters.

Of course this subsided with medication, but it threatens to return any time I experience stress. It taught me that my reality can change over time. For me, the boundary between what is real, and what is imaginary, is so very thin. My symptoms are largely controlled by the medication, but it is always there, under the surface.

This situation was made all the more complicated by being autistic. Professionals told me that I didn’t meet the criteria for a schizophrenia diagnosis because I wasn’t “typical” in presentation. My position on that has always been this; I am autistic, nothing about me is typical.

As an autistic, I pride myself on having a rigorously logical approach to everything, and yet, my brain can invent its own reality at a moments notice. I still have bad days where I hear voices and experience paranoia. I have learned that it is when I lose the ability to recognise that these things are not real, that i have a problem.

Psychosis was and still is a terrifying experience to me, but it has made me resilient. I have learned to survive in a multitude of different worlds.

If you or a loved one may be experiencing psychosis, please speak to a psychiatrist. Psychosis is an incredibly complex state that can not be willed away by lifestyle or all the good intentions in the world. No one deserves psychosis, and I mean that honestly. It has taken me years to trust my mind again, and I would not wish that on anyone.

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.

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.

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.

Autism and disability: Reframing our view

Recently i have seen a lot of articles and posts on social media distancing the autistic neurotype from the word disability. For the most part i understand where this is coming from, the word disability has been associated with poor life outcomes, and associated with being somewhat of a burden on society and thus something that needs to be cured or eradicated. This is obviously very problematic. What needs to change is not the association of autism and disability, but our understanding of what the word disability means.

Disability is not a dirty word. Disabled people such as myself have the right to exist and enjoy life without people calling for our eradication from society. Disabled people are just as valid as non disabled people. This is why the discourse i have seen surrounding disability and autism is so problematic to me. People are distancing themselves from the word disability due to ableist misconceptions about the meaning of the word.

In the context of autism, as with all life-long conditions and neurotypes, the degree to which autism is disabling changes not only on a case by case basis, but also day to day, hour to hour. For the sake of analogy, allow me to use an example from the medical world (possibly not a perfect example, but i feel it explains my point).

Consider asthmatics. Some asthmatics live their life with very little support needed for their asthma, perhaps not even needing to use inhalers every day, on the other hand, some asthmatics require a great deal of support from specialists and specific medications, the latter obviously finding their asthma particularly disabling. However it is not that simple, any asthmatic will tell you that there are times when their asthma gets really bad and impacts on their life, and those who require more support may find that they have days when their asthma is not as disabling, regardless of the day to day changes, asthmatics still face many challenges and asthma is therefore a disability. As a side note, this is why functioning labels are so problematic. They ignore the ever changing field of strengths and challenges.

In much the same way, some autistic people may navigate life relatively simply (that’s not to say that they don’t face significant challenges) while others may struggle with some of the more basic demands of life such as holding down a job, or remembering to eat and shower. For this reason, i personally believe autism is a disability. Even those of us who navigate the world more easily face challenges which must be overcome.

Of course when i talk of disability in this context, i am talking of the social model of disability. Unlike my asthma example, which is quite definitely an medical disability, autism is a disability because society does not make appropriate accommodations. This is the social model of disability, which i will not get into describing in this article because really it deserves its own article.

There is nothing wrong with being disabled, disabled people are valid people who have much to offer the world. As autistic people, we must stop distancing ourselves from the word disability. It is already hard enough to gain support as autistic people, let alone if we ourselves start denying the challenges we face.

For the sake of those of us who have spent many years trying to access appropriate supports, we must reframe our view of disability. I say it again, disability is not a dirty word. We need to teach people that disability is not something that needs eradicating, but is in fact another thread in the complex tapestry of human diversity. We need to celebrate disabled people and their contributions the way we do non-disabled people. We do not need to be afraid of admitting we (autistic people) have a disability.

What is MMS and why has it been in the news?

If you’ve been on social media recently you may have noticed stories appearing about people feeding their children bleach in a misguided attempt to “cure” their autism. Specifically the articles refer to a protocol called MMS.

MMS is an acronym for Miracle Mineral Solution. First promoted by ex-scientologist Jim Humble in his book ‘The miracle mineral solution of the 21st century’ (2006, self-published). Jim humble claimed that MMS could “cure” everything from cancer to AIDS, but specific to this article, he claimed it could “cure” autism. None of these claims have ever been tested in a clinical setting.

MMS contains a chemical called chlorine dioxide, an industrial bleach used in water treatment and the textiles industry. The high doses administered by MMS quacks can cause nausea, vomiting, shedding of the mucous membranes of the intestines (which many quacks have claimed are rope worms- they aren’t, that’s your childs intestinal lining), and low-blood pressure through dehydration to the point that it can become life threatening.

Some of the logic behind MMS is the delusional belief that autism is caused by parasites and/or fungus, and that the MMS kills these foreign invaders thereby freeing the child from the grips of autism. The reality is that these people are force feeding bleach to their children, with many using forced enemas to get the MMS into the child. That’s not treatment, that is sexual assault.

MMS is dangerous for more reasons than the toxicity of the active ingredient. Parents and carers are forcing this upon their children, teaching them that just because they have a neurological difference/disability, their bodily autonomy does not matter. They teach these children that it’s okay for an adult to do something that makes you feel uncomfortable or scared.

The battles against MMS has raged for a number of years now, with notable activists such as Emma Dalmayne and Fiona O’Leary making great strides in the UK and Ireland. The battle is far from over, despite great advances such as the removal of quack Kerri Rivera’s book from amazon, there are still many people on social media promoting this dangerous protocol to a large audience.

Many autistic people have stood up to the MMS abusers, but this fight needs more, we also need our allies to listen to us, and help as dispel the myths and stigma that make autism seem so terrifying to these parents and carers. Share articles and join groups led by autistic people. Keep this topic in the limelight, that is how change is made, people need to be outraged.