The duality of Autistic experience

We live in a world of false binary systems. It seems that everywhere you go, something is either one thing or another. The same can be said of the Autistic experience.

Many people are currently engaged in a long standing argument. Is autism a disability, facilitated by systemic trauma, or is autism a purely positive thing, with Autistic people living happy lives?

First of all, an incorrect assumption has been made in this argument. Disabled is not the opposite of happy. Being disabled is neither good nor bad, it simply is what it is. Disabled people can lead happy and fulfilling lives, they can also struggle immensely.

Yes, the system is designed and executed in such a way that systematically traumatises the disabled, but disability and happiness are not mutually exclusive.

This brings us to the second point. Like any other disability, autism is neither good nor bad. Not all autistic people are happy, in fact, many experience mental health problems as a result of the trauma they have experienced at the hands of the system. Assuming that autism is a gift, is not necessarily correct (depending on context).

This brings us to the title of this post. The duality of our experiences as Autistics is in our ability to accept our disability while striving for happiness. The acceptance of our disability so often allows our happiness.

Why can’t we accept that being autistic comes with good and bad? Telling the world that being Autistic is all sunshine and rainbows is not the answer to the medical model. We cannot depathologise by being in denial. Being Autistic can be hard.

This applies whether you are diagnosed, undiagnosed, or self-identified. The system that oppresses us affects us with or without proof of Autisticness. You don’t need a licence to be Autistic. You simply need to exist.

And so, let us move forward into a paradigm where we can reject the ableism that causes people to distance from the word “disabled” while remaining honest about our struggles. We are uniquely human, our neurotype is a mixed bag of experiences.

My name’s David, and I’m happy disabled.

Autism, addiction, and my need for control

I have learned a great deal about myself through self-reflection over the last 5 years of sobriety, but one lesson was considerably difficult to learn.

I like to think of myself as a friendly and generally happy and fun person to be around, but the truth is that I need control. I need control over everything. When things in my life are out of my control, I experience a deep-rooted anxiety and panic that can push me into a self-destructive spiral if left unchecked.

This is what made substance use so attractive to me. My life was chaotic and terrifying thanks to my worsening mental health. Substance use gave me control over my feelings and reactions. As an addict, I quickly learned that when things got too much to handle, I could essentially switch myself off.

Not only did it give me control over my emotions, it gave me control 9ver my identity. In previous articles I have spoken about how I was unhappy with my identity, and it’s just as relevant here. I wanted to be someone or something else. Drugs and alcohol gave me that. I was “Dave the Rave”.

I was the guy that by all definitions of the word, should have been dead.

Of course what I failed to see was that I was not controlling my identity, the substances were in fact controlling me. I was not choosing to be David the Addict. It was inescapable.

The final point to consider was that as my mental health deteriorated, so did my routine. My life was chaos. This was horrific to me as an autistic person, which subsequently caused me to deteriorate further. It was a vicious circle that span in perpetuity. Drugs and alcohol actually gave me some semblance of routine. Yet another insidious way that I fooled myself into thinking I was doing okay.

Even now at 5 years sober, I still struggle with my need for control. I catch myself trying to engineer every aspect and every moment of my life. Meditation helps me sit with my experiences, but truthfully the only thing that stops me from manipulating everyone is knowing that it’s wrong. If it was a socially acceptable thing to do, I would absolutely engineer and manipulate everything about my life.

That’s how much I need control over my life.

Autistically medicated: the journey to find what works

My name is David, and I have to take a ton of medication to stay healthy.

It’s taken years to find the balance, and recently, one of the main medications has had to be changed.

Currently I am taking aripiprazole, paliperidone, mirtazapine, trazodone, promethazine and propranolol for my mental health (although the paliperidone will soon be discontinued, and the aripiprazole dose increased).

I also take procyclidine and rosuvastatin for the side effects of my medications.

I’m autistic and have complex mental health conditions. I’m stable, but it’s taken a long journey through various medications and talking therapies to get here. My autistic brain is sensitive to changes, so I have endured a lot of side effects.

Why did I endure it?

I wanted to get better.

I realised that if I wanted to feel better and be better, I had to listen to what the experts were telling me. There has been a lot of trial and error, but I am now in a place where, even though difficult things are still happening due to outside forces, I am happy.

I have walked away from people who shame me for taking meds. I don’t need them in my life. For some of us, medication is a prerequisite of life. Finding that balance however, can be a nightmare.

My autistic brain doesn’t react typically to anything, and there is little to no research on many of these medications in autistic people. For this reason, it’s taken me over a decade to get to where I am.

My psychiatrist deserves a bloody Nobel prize. He has worked in the dark to make me well again. What we have achieved together is nothing short of a miracle.

My advice for anyone struggling with mental health is to work with your doctor. Use their expertise. Discuss how it makes you feel. It’s tricky, but you have to give a certain level of trust.

Medication is a lifeline that everyone should have access to, and I will never allow people to be shamed for it on my platforms.

We need to work together to destroy the stigma surrounding medication.

Neurodiversity and the power of collective activism

“My life amounts to no more than one drop in a limitless ocean. Yet what is any ocean, but a multitude of drops?”

Cloud Atlas, David Mitchell

This quote has echoed around my mind for many years. Much like the Revelation of Sonmi-451 (also from Cloud Atlas), it has been a driving force in the work that I do today.

It’s a simple but powerful concept. How can a single drop change the ocean?

Every drop, makes a minute change to the ocean, when thousands or millions of drops fall on that ocean, it can have a big impact. This is the power of collective activism. Every drop has unique power. We each bring something to the ocean that wasn’t there before.

Is this not the beauty of what the neurodiversity movement is doing? Every drop in this ocean is giving what it can. Some, like me, speak on wider platforms, others make the intricate and targeted changes that people like me don’t have the spoons to do.

Together, we are shifting paradigms. The world is undeniably changed by our existence. We have power, and we have to be respectful with that power. Every single thing we do changes the ocean.

Please don’t ever think that you are not making a difference, have respect for your power in this world. Every part of your existence has changed our world. Society at large is entering a new era, and that is just as much because of the followers as it is the influencers.

I thank everyone of my followers for reading, listening to, and sharing my words. I would have no power to make change without you. You are the reason I can do what I do.

Please never forget how vitally important you are.

Autism, disability, accommodations, and the status quo

Let me start this piece with a massive shout out to Lyric Holmans (Neurodivergent Rebel). Their recent livestream with Aucademy provided a huge deal of inspiration for me to write this, and I can’t go ahead without giving credit where credit is due.

Autism. Is it a disability, or not? That question will have different answers depending on who you ask. The prevailing opinion is that, yes, it is a disability, but under the social model of disability. To define that in a nutshell, autism is a disability because society is not designed for autistic people.

So, why make accommodations?

By adapting the environment to be more comfortable for autistic people, autistic people feel less disabled. Our world is full of sensory bombardment, requirements for neurotypical time management skills, and things that need our attention. All of these things can be distressing to autistic people, and it is when an autistic person is distressed that they are at their most disabled.

But Lyric also illustrated a flip side to this. When we make the environment more comfortable for neurodivergent people, we generally make it more comfortable for everyone. When people in charge respond with “But everyone wants that!”, that’s the point. Make the environment comfortable for EVERYONE. No one group should get special treatment, neurotypical or neurodivergent.

This also feeds into “cure” culture. I am yet to see a “cure” or behavioural intervention that doesn’t increase an autistic person’s distress. However, making accommodations, in general, reduces distress. Lyric Spoke of square pegs being forced into round holes, why not adapt the hole to fit any shape of peg?

It is the status quo in society that makes autism a disability. That’s literally what the social model tells us. What we need is to rethink society to be inclusive of everyone, not just to have special designated spaces where autistic and otherwise neurodivergent individuals can feel comfortable. This applies to Autistics of any age.

Until we liberate society from its neuronormative approach to inclusion, many autistic people will continue to be disabled. It’s on all of us to create a world where anyone, regardless of disability, can enjoy a society free of ableism and truly inclusive of all.

How can substance use services be more accessible to Autistic clients?

I have written before about the barriers to accessing substance use services when you are both autistic, and an addict; today I’m going to approach from a different angle.

In this post, I will be talking about a few things that such services can do to increase accessibility, improving the quality of treatment that autistic and neurodivergent substance users recieve.

Let’s begin.

One of the first things I always point out, is how difficult it can be to keep track of appointment schedules when you are autistic. Services can improve this by using automated messages several times leading up to an appointment in order to remind the client of the details.

Services can also offer an array of reminders through different mediums so that the client can pick the reminder that will work best for them. It would also be helpful if key workers a medical staff could let clients know what will be discussed in the appointment so that they can prepare themselves for it.

The next one is a personal favourite of mine, and I’m yet to see it implemented.

The waiting room environment in treatment facilities can be overwhelming. Sensory friendly waiting rooms, designed by autistic people, for autistic people, could make a real difference here.

It’s impossible to recieve effective treatment if you are going into an appointment already overwhelmed. Thought should also be given to the appointment environment.

The last two are connected, and vital.

First, staff need to be trained on the difference between a panic attack, and a meltdown, and how to calmly and compassionately de-escalate both. Both of these situations have the potential to completely derail treatment if they are handled inappropriately.

Finally, staff need to recieve regular training on autism and neurodiversity, from Autistic and neurodivergent trainers (bonus points if they are also in recovery from addiction). Many staff in these places only know what medical schools and brief awareness courses teach. Often, they view things through the deficit-based medical model of neurodiversity.

Anyone of these changed could vastly improve accessibility, but all of them together would make a vast difference to the treatment environment. It’s important to note that it would not just benefit autistic clients.

When we improve the environment for autsitic and neurodivergent individuals, it generally improves it for everyone.

5 lessons I have learned in 5 years of sobriety

Today (7th April 2021) I have been sober from drug and alcohol addiction for five years. In that time I have faced many challenges and learnt many lessons. In this piece, I hope to share some of those lessons with you.

1. Not everything will be perfect once you get sober.

Addiction is am absolute monster of a battle, but the battles don’t stop eith sobriety. Life is full of ups and downs, and you will need to learn to cope with the downs without returning to your addiction. Life will always throw curve balls.

2. Addiction will try and catch you out.

Sometimes addiction will feel like a living entity in your brain. Good or bad times, there will be moments when your mind will try and convince you that “just one drink will be okay”, or “maybe I can just have a few tokes of that spliff”.

Your brain is lying to you. It never stops with just the one. The addicted mind seeks to destroy itself, don’t let it.

3. Don’t be afraid to ask for help.

Everyone, addict or not, needs help from time to time. It’s important that you get to grips with who you are, and learn to advocate for and communicate your needs. Communication is key in recovery.

4. Socialising can be just as fulfilling without drugs and alcohol.

One of the greatest joys of my life was learning to enjoy the company of others without using mind altering substances. The realisation that I could mess around with my friends and have a laugh, whilst also remaining sober has really set me free.

5. Mindfulness is your friend.

This one, the last one, is really important. Learn to sit with your emotions. Observe them, and let them pass. Nothing lasts forever, even the deepest of distress. When used in conjuction with lesson 3, it makes sobriety a whole lot easier. Remember that mindfulness takes practice, and you have to practice in the good times, so that in the bad times you are ready to use it.

And that’s it. Five lessons I have learnt in five years of sobriety. Never forget the power of community for finding recovery, reach out and use every tool in the toolbox. Five years ago I was nearly dead. I hope that my existence now proves just how possible it is to return from the brink.

Thank you all for your support.

Accepting Autistics and other radical notions

It’s April, so you know it’s about to get real bloody frustrating trying to be heard over the like of Autism Speaks and other problematic groups claiming to represent “people with autism”.

When it comes to the notorious Autism Speaks there is one thing in particular that we should facing up to. Cure culture.

Cure culture is the ultimate way to show autistic people that you do not accept them for who they are. It starts with better known interventions, such as ABA, and spreads all the way to dangerous quack cures such as Miracel Mineral Solution/Chlorine Dioxide abuse.

Why does society want to cure us? Because it values the status quo over the beauty of human diversity. Unless your quirkiness somehow makes you economically valuable, the world seeks to stamp it out. It’s the ultimate way that capitalistic society harms autistic people. Some people will literally murder autistic people rather than embrace our neurodiversity.

Let me lay it out for you. There is no cure for autism. Taking autism out of the person is like taking the engine out of a car. The car no longer functions as a car. Being autistic is our physical wiring, without it, we would not be who we are.

This is what upsets me so much when I see parents and carers seeking to “cure” their autistic children and loved ones. Yes, we face daily struggles, but how much do you have to resent your child in order to want to change them into a co.pletely different person?

That’s what it comes down to. Resentment. The world resents us for existing. It resents us because we demand equal rights, and the world has to put in work to meet those demands. The old rules of “more rights for me, does not mean less for you” has never rung more true.

If I could stamp out one thing this April, it would be cure culture.

This April, please listen to and amplify #ActuallyAutistic voices. Be an ally to the autistic community.

Filming addicts in crisis is a form of violence

I remember some years ago when the drug known as “spice” was sweeping through my country. Not only were the tabloids having a field day, and not only were people filming addicts on the street under the influence, I was using it.

It was a relatively common sight in some cities. Individuals helplessly and mindlessly stumbling around in a zombie like fashion, people screaming curses, refusing to see the suffering of those of us who were hooked on the stuff.

But what I really want to focus in on are the people who were filming us. They were the worst kind of people, and sadly, they still exist.

The people holding the cameras often claimed that they were “spreading awareness”. In fact what they did, was post the video to social media, and embark upon discussions of how people like me were scum, how we deserved to die, how our suffering was our own fault.

They weren’t spreading awareness, they were spreading hate. It was an act of violence against a group of people that are already significantly marginalised by society. It was the moral model of addiction running at full tilt.

When a person is suffering in such a way, filming them and posting it to Facebook is perhaps one of the most humiliating things you can do. Unfortunately, humiliation is what these people go for. People speak words and carry out acts of violence against addicts eith great regularity. Often without ever raising a fist.

I hope dearly that none of my followers have ever done such a thing. And if you have, I hope you have come to feel remorse about it. By doing such things, you are actively helping to kill addicts.

If it sounds like I am using strong words, then take heed. This is not a harmless matter. Imagine trying to rebuild your life from addiction while videos of you in the thick of it circulate on social media. The Internet is forever.

If you ever see a person suffering in such a way, please extend compassion. Make sure they are safe, call for any help that may be appropriate. You can also help protect opioid addicts by receiving naloxone training. The dawn of naloxone has saved many, many lives.

Addicts are human beings with emotions, hopes, and dreams. We are often traumatised children. Extend compassion where you can.

Why is the moral model of addiction so prevalent?

As previously discussed, the moral model of addiction, in which addiction is seen as a moral failing, is inadequate for our understanding of addiction and formulating a means to approach it. Despite this, the moral model of addiction remains prolific throughout multiple cultures globally. Why is this?

In my opinion, its prevalence can be brought down to one reason, albeit somewhat complex.

Addiction appears to have a genetic component. This has been supported by some scientific evidence, although it still remains to become theory. One considerable difference between addiction and many other genetic conditions, is that addiction requires an environmental catalyst to emerge.

What do I mean by environmental catalyst? Simply put, one does not become an addict until they begin to engage with the subject of their addiction. In my case, the choice to drink alcohol and take drugs was what triggered my addiction. The question, however, still remains to be answered as to whether or not I would have become addicted to something else in the absence of those things.

This then, is perhaps where the moral model begins to emerge from. Because people make an initial choice to use, that in itself is seen as a moral failing, even though many people are able to use drink and drugs, or gamble, or play video games (etc) with a modicum of safety. This is perhaps the first failing of the moral model.

Where the moral model continues to fail is in what follows. The model in itself illustrates a world in which addiction continues to be a choice. It proposes that addiction is not a public health issue, but instead a wish to live a hedonistic lifestyle. It suggests that we as addicts want to use/drink/gamble/etc to the point that we suffer and cause suffering for others.

All of this emerges out of the concept of choice, a misunderstanding turned wilful ignorance of the addicted condition.

Addiction is not a choice. It is not a matter of hedonism and criminality, it is a matter of trauma and public health. Continuing to allow the moral model to prevail allows addicts around the globe to suffer and die needlessly. We must continue to dismantle the stigma surrounding addiction and to educate people on the truth of this condition.

We must bring an end to the criminalisation of addiction, and we can’t succeed at that until the moral model dies.