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Limits of the traditional twelve-step program for autistic folk

Anyone who is even vaguely familiar with the addiction recovery community will likely have come across the twelve-step program in one form or another. Alcoholics anonymous, cocaine anonymous, narcotics anonymous, the list goes on. There are many different groups employing the twelve-steps, and it is often what addiction treatment services suggest to service users to support their goal of recovery.

That last point is a problem for autistic folk. The big book of alcoholics anonymous claims that the program is suitable for anyone, but in my experience, the twelve-steps are quite inaccessible to those of us who are autistic.

So what makes the twelve-steps inaccessible?

The first issue I had was the talk of a “higher power”. I fall on the side of agnosticism and atheism, relying on a higher powers felt absurd to me. The twelve-steps involved a lot of praying, and I couldn’t reconcile that with my own beliefs. In my opinion, this also reduces accessibility to the LGBT+ community, of whom many are autistic, because of religious trauma that they may have experienced.

The social aspect was also incredibly difficult for me. Before and after meetings involved a lot of small talk and hugging. Those of us with a touch aversion will already understand my issues, and I can imagine that most, if not all Autistics can appreciate the horror of being faced with small talk. Just thinking about it used to make me anxious.

The rooms are often lit with bright white lights, in old buildings that smell weird, filled with extremely uncomfortable fold-up chairs. You are expected to sit in these rooms for an hour to an hour and a half, without being too fidgety. Leaving to go to the bathroom too often is regularly met with suspicion.

While the structure of the twelve-steps can be helpful for planning and goals, the homework set by sponsors as you work through the steps can often clash with executive dysfunction issues. Until these issues are addressed, the twelve-step program will never be fully accessible to Autistics.

The whole experience left me having regular panic attacks at meetings, and when I thought about meetings.

Of course, other Autistics may have a better experience of the program. As addicts, we must utilise all of our experiences to find recovery, and what ever works for us (and doesn’t cause further harm) is valid. It does concern me however that these programs are considered a “go-to” intervention by many treatment services. It’s especially problematic when you consider that twelve-step programs generally will not allow academics to study their efficacy (supposedly to protect the anonymity of its members).

For me personally, I learnt an awful lot about my addiction through the twelve-steps, but had to ultimately support my recovery through other means; but once again, if it works for you, I would never seek to take that away from you. My main issue is that the twelve-steps, like most addiction related things, does not account for autistic addicts, of whom I believe there are more than we realise.

Until the addiction community makes itself accessible, lives are in danger. It’s time for autistic addicts to declare their existence.

On being an autistic advocate and the difficulty finding support

I would like to start by thanking my good friend for bringing this issue to my attention. I would not have thought to write on the topic without that person, and it is such a very important topic.

Being an advocate is weird. For most of us I think it comes with a degree of imposter syndrome. Beyond that, we have to be SO careful about what we write and say. We are in the public eye at all times, and simple mistakes can ruin our credibility. The internet is an unforgiving place.

Advocacy comes with a lot of stress, that’s why it concerns me that many of us struggle to reach out for support. I was fairly active in support groups, reaching out for help and advice when it was needed. These days I find myself not doing so. I am worried about how it will reflect on my advocacy work. I know this seems hypocritical because I am a huge advocate for open communication, but I find myself reaching out to my “real life” friends (who have very little knowledge of the autistic community, despite many of them being autistic themselves) more often than I reach out to members of this community.

This is especially problematic when you consider a lot of the bullying and infighting that has occurred between advocates in recent times. Only when I started speaking to other advocates did I realise the extent to which we had all had very similar experiences. Prior to this I had felt very alone in my advocacy. I owe a lot to one support group in particular, which I will not name so as to keep the other members safe.

We as autistic advocates need to open up our lines of communication. We need to show each other that we are together in a shared experience, and then work together to improve the areas that are more stressful and traumatic. We especially need to do this for the newer advocates emerging onto the scene. Many of them are young, and potentially a bit naive to the realities of advocacy. For their sake, we need to show them that it’s okay to speak out and seek support.

I am grateful for the other advocates I have met, they have been a source of much strength and inspiration for me, and have done an awful lot to support my advocacy work. I look forward to continuing my work in the knowledge that I have a safe network of people (who understand the community) who I can have support from.

If you’re new to advocacy, I suspect that you may be feeling a little isolated right now. Please know that it’s okay to reach out for support. Your highest priority should be to look after your own wellbeing. You can’t pour from an empty cup, and the work you are doing is vital.

OPINION: Sia’s “Music” film represents the ableism inherent in todays world

By now I’m sure some of you will have come across discussion surrounding a debut feature film by Sia, if you haven’t, you can read about it here. It has raised many concerns over ableism in the film and television industry. The film centres around a teenage girl called “Music” who is non-speaking and autistic, and her half-sister who has become her legal guardian.

The film uses musical fantasy scenes to depict how Music sees the world. If done right, this could be a really interesting film. I personally love musicals, and am all for decent representations of autistic people in the media. So why am I disappointed in a film that I haven’t yet seen?

Having watched the trailer, I wasn’t sure how I felt. The interactions they did show appeared to infantilise the autistic teenage character. The character that was depicted seemed to be very stereotypical, and contained little of the nuance that true consultation with autistic people could have provided.

The actor playing Music, Maddie Zeigler, is not autistic. When Sia was confronted by hordes of people about why an autistic actor was not given the role, Sia claimed that she believed an autistic person of that “functioning” level could not have dealt with the stress of filming. At every turn, Sia has doubled down on the casting choices; even going as far as to accuse an actually autistic actor on twitter of being bad at their craft when they spoke out to say that they could have happily performed in the role.

This represents a bigger problem in the world. Despite the two autistic consultants that Sia claims to have utilised, autistic voices are still being erased and ignored. The call of #NothingAboutUsWithOutUS means to have autistic people included on matters that refer to the autistic world. Yet still we are left out of the conversation, and the targets of vitriol when we speak out.

Until autistic people are truly included, and not just in a tokenistic way (as is so clear from the rhetoric surrounding this film), we will never beat the ableism and stigma of our current world. Sia owes autistic people an apology, and it’s about time she gave it to us.

Finding sobriety: The seemingly insurmountable challenge

Many people ask me how I found sobriety, what changed in me to trigger that growth. I honestly think that might be the wrong question, not to mention awfully difficult to answer for most people in my position. The question that I think needs to be asked, is why didn’t I find sobriety sooner? What was it that drove me to keep using?

I kept going back to the drugs and alcohol. Every time I decided that it was time to return to normal life, I kept finding myself rapidly returning to my old behaviours. Even after I suffered a spontaneous pneumothorax (spontaneous collapse of the lung), I swore I would stop smoking cigarettes and weed, yet once back in my normal life, found myself using all over again. This despite the fact that I had nearly died.

What was it that made it so difficult to quit?

My answer to that is deceptively simple. Addiction takes everything from you; my relationships were in tatters, my career was gone, I was incapable of living independently, what little money I had would be rapidly burned up buying drugs and alcohol. I had very little in terms of professional support to begin with because my behaviour meant that I did not easily engage with services.

Addiction takes everything from you, but requires all of your resources to beat.

I had to get creative, and seek a lot of support to find the resources I needed to get sober. I turned to places I never imagined. I spent a month in a psychiatric ward going through an inpatient detox. I joined the twelve-step programs in my city, and although they weren’t appropriate for me, they did teach me a lot about my addiction.

Once I had found sobriety, I had to keep it. There were two vital ingredients to maintaining my sobriety; Open communication and my autism diagnosis.

Once I learned to start communicating my needs, my strengths, and my struggles, professionals were able to support me better, and my friends and family could begin to unravel the sources of a lot of my more harmful behaviours. This led to the second ingredient. When I started to communicate what I was going through, the autism that professionals had denied my entire life became apparent (fun fact: the name of my blog ‘Emergent Divergence’ is in fact a reference to the fact that my autistic traits appeared to emerge to professionals once I was sober).

I maintain my sobriety now through communication and altruism. I advocate for others because it allows me to communicate my experience in a goal oriented way. By discussing my struggles and strengths, I am able to help others. Addiction can make a person very selfish, and I am resolved now to be the opposite of that.

If you are an addict, wondering how you will ever find sobriety, please keep trying. Different things work for different people, and especially if you are autistic, you need to be open to breaking away from mainstream routes to sobriety. I don’t mean engaging with pseudoscience, but you do need to approach the task with an open mind.

Sobriety is a beautiful thing to achieve, and worth the blood, sweat, and tears that it takes to achieve. Keep going, keep pushing towards sobriety. There is a world outside of addiction that shines in hypercolour, and one day you will look back on your journey and be proud of yourself.

2020: Reflecting on the year from my autistic perspective

Perhaps I am a little early on this, after all, we still have around 6 weeks left of this year, but it felt right at this point to reflect on the year from my autistic viewpoint.

December 31st 2019, I had my usual gathering with my friends, but this time I didn’t make my usual speech about how the next year was going to be the year that my life took off, I had given up hope of a better future and resigned myself to the present, more so, my past. How wrong I was.

Within a month I had found a house, and by February 1st I was able to say that (after years of living back with my mother following my addiction and psychosis) I was living independently again. Over the following months my advocacy work would start to pick up momentum (thanks in no small part to my role at NeuroClastic) and my writing would start to build a real following.

Still, this has all be undercut by a really dark year.

None of us could have foreseen the pandemic that was coming for us, save perhaps for our politicians and scientists, but now is not the time to get into that. Our lives have been changed so drastically from what we are used to. In the UK, we spent (what felt like) endless months in lockdown during the first wave, and are currently in a second lockdown.

Many of us have lost the things we took for granted, things that until now, we didn’t know how vital they were to our wellbeing. The vulnerabilities of our society have been made obvious, but this is where my pride steps in. I have seen autistic people step up and do amazing things to support each other and society at large. Even in my own home city, I have seen autistic people staff foodbanks, and set up online peer to peer support for isolated friends.

Autistic people, who supposedly have no empathy, have gone above and beyond to care for others this year. THAT is why I am proud to be autistic. Not everyone in our community is a ray of sunshine, but so many have shone light into the dark places this year. People who have felt alone for a long time now know that they have allies around the world.

This year has also been big for our US friends, with the results of the election amazing people around the world. Whether you were happy or unhappy with the results, you can’t deny that this was a historic election.

I have noticed this year that Brexit has largely exited the zeitgeist, despite the fact that this is definitely still ongoing. I guess we will see what happens in 2021.

I have had to learn a lot about myself as an autistic person this year. Some of it good, some of it bad. If nothing else, this year has been an opportunity for personal growth, although I am sure I will be processing some of the more painful parts over the next few years.

Autistic people need to be proud that they survived this year, and keep the flames alight for all those who have not survived this year. 2020 has upturned our cherished routines, and we have come out the other side. I am determined to remain optimistic that life will be looking better by the end of 2021.

Finally, I want to give a shout out to all my fellow autistic addicts out there. Recovery is a mountain of a task all the time, but this year has been especially difficult, with some estimates suggesting that 25% of addicts have experienced a lapse of a relapse during lockdown in the UK. Never give up, you deserve sobriety, even when you don’t feel like it.

I hope you have a good holiday season, and enter 2021 with a renewed resolve.

OPINION: Stop referring to sober addicts as “clean”

Growing up alongside an addict I had heard the phrase “clean and sober” thrown about by many people (interestingly, not my family). When I became an addict myself, I quickly learned of the stigma surrounding drug and alcohol addiction, even at a time when I did not recognise addiction in myself.

Skip forward to October 2015, I was sitting in an inpatient detox ward, having nightly visits from members of the twelve-step programs in my local area. It was at this time that I first started hearing the term “clean and sober” directed towards myself. I immediately felt uncomfortable.

The language we use to describe the various states of addiction is important. When we refer to sober addicts as clean, we are sending a clear message; if you have not yet attained the gift of sobriety, you are unclean.

This is SO harmful. Imagine struggling with the monster of addiction every day of your life, while the world tells you that you are not “clean”. The stigma surrounding addiction is so vicious already, we must not encourage addicts to internalise that stigma. This is a small part of the reason why I walked away from the twelve-step program. I couldn’t stand to hear addicts referred to as “clean”.

While we continue to use this word, we are effectively gatekeeping sobriety from various addicts. They hear “you are unclean, you are not worthy of sobriety”. We compound their suffering.

As an autistic addict, this is adding more stigma to a world that already mistreats me. I already face stigma for being a neurological outlier, I also personally face stigma for being a voice hearer and a person who experiences psychosis. Why should I also be told that I was unclean? I wasn’t unclean when I was using, I was suffering.

The time has come for the empire of “clean and sober” to hang up it’s hat, and give way to a world that simply says “this person is sober”.

Addicts need compassion, not stigma.

Autism and the future of diagnostic criteria

Diagnosis is a privilege, it’s a fact known by many in the autistic community. Beyond this, there are other issues with diagnostic criteria and how they were developed, but specifically I want to zoom in on one issue; the diagnostic criteria seems to be based on autistic people in distress.

Rather than looking at autistic people in their daily life, the criteria used to diagnose us seems to be reliant on us having reached a point of great trauma or distress. This presents a number of problems for access to diagnosis, but what how does this line up with the goals of the neurodiversity movement?

The neurodiversity movement has one big over arching goal; to create a more accepting and accessible society for neurodivergent people. It is the hope of many of us in the movement that we can create a society where neurodivergent people don’t have to fight to fit in, and are not tormented by a world not designed for them.

Let’s take a trip into the future, 100 years or so. Imagine a world where the neurodiversity movement has achieved it’s goals for the most part. Autistic people are now accepted by society and treated equitably. The world is no longer a constant assault on our senses, and we have the same access to education, employment, and healthcare as the neurotypical population.

A by-product of this world is that autistic people experience significantly less distress. What does this mean for autistics seeking a diagnosis? Happy and content autistic people are (in my opinion) much less likely to meet the diagnostic criteria currently listed in the DSM. Some might argue that a fair world would not require us to have a diagnosis, but lets assume that in our hypothetical future there is still some work to be done and a diagnosis is still an important part of access to services and support.

I suspect that in this hypothetical future, the number of autism diagnoses would begin to decline, resulting in a world of confused and lost autistic people, unsure of who they are. For this reason, it seems clear to me that the diagnostic criteria needs to change.

For the sake of future generations, we as autistic people need to embark on a campaign of activism. We need to show diagnosticians that the current diagnostic criteria is not fit for the purpose of the world that we are trying to create. Research needs to inform the criteria about what the average autistic looks like in day to day life, and not just how they appear due to trauma or distress.

The neurodiversity movement is a beautiful force for good in the world, and now it is time for it to create diagnostic criteria that reflect the world we are trying to create. Until this is done, there will be no accessible and equitable world for all of us. We owe it to our children, and their children, to plan for what we hope to build.

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