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The cost of autistic masking

Many of us, as Autistics, are well versed in masking. For so many of us, it is an involuntary reflex that happens without thought.

What is masking?

Masking, simply put, is the practice of disguising your autistic traits in order to pass as neurotypical. It is a survival mechanism in a world that actively oppresses and abuses us for being different to the majority.

There are a lot of people now working to remove their mask, and live authentically as a proudly autistic person. Sadly the process of unmasking is complicated.

In my experience there is one aspect of masking that I do not see discussed a lot. It is insidious, and can cause a great deal of harm to the wellbeing of the autistic person. It’s not the spoons or psychological energy that masking costs. It’s the doubt.

I have masked my entire life with varying degrees of success. I managed to go 26 years without a diagnosis as a result. The truth is, that I have been so good at masking that at times I have begun to doubt my own autism diagnosis.

I look back on my life, and all I can see is the mask. I hear the words of people who have told me that I’m “not autistic enough”. I start to wonder, am I really autistic?

At times this has cost me a great deal of my mental health. Living with that constant doubt takes a toll, but the truth is it’s not my fault.

Society taught me that the majority were better than me, more worthy of love and acceptance. I pushed down my autistic identity because I wanted to be accepted.

It’s probably at the core of my addictive behaviours. I felt it necessary to replace my identity with a more palatable one. Drug and alcohol using David was so much better adapted to the world, or at least that’s the lie I told myself.

I literally buried my autistic identity in a mausoleum of narcotics and alcohol. It cost me almost everything.

Despite this, I still found my way into the autistic community, and through that community, I have learned that it’s not my responsibility to “fit in” or pass as neurotypical.

I am certain that I could not have found sobriety without starting to remove the mask. The mask is still there today, but everyday, it loosens a little more. I owe the community that. Their love and acceptance gave me the courage to be myself.

We need to change society at its core. The neuromajority can no longer dictate the world by what it feels comfortable with. Autistic people exist, and they deserve to live authentic, happy lives.

It’s time for us to do the inner work that will allow us to remove our masks, and be proud of our identities.

Surviving and recovering from the holidays and avoiding autistic burnout

Out of the last 48 hours, I have just spent 22 of those hours preparing and cooking Christmas dinner to be delivered to 30 vulnerable people in my home city. I do this every year, and it takes everything I have to do it.

Whatever your traditions for this time of year, there is one thing to be certain of; it’s very tiring.

As autistic people, the holidays can be a nightmarish landscape of expectations and commitments that leave many of us burned out. As an autistic addict, I also have the fun of often being the only sober person in the room.

Here’s some tips from me to you, on how I survive the holidays.

1. Make time to do your own thing.

This means setting boundaries. People around you need to know that from time to time, you need to do things on your own that you enjoy. You don’t have to be “anti-social” (the neurotypical world loves that word), you just have to respect your needs enough to know when you need to recharge.

2. Do things that have positive meaning to you.

Even though it takes everything I’ve got, feeding vulnerable people on Christmas day gives me a sense of purpose and makes me feel good about myself. Of course, you don’t need to do something on that scale, but establishing your own positive traditions during and after the holidays can be an important protective factor.

3. Get plenty of sleep.

Once the chaos has settled down, make sure you get the sleep you need. Nothing will lead you to burnout faster than sub-optimal sleep.

4. Moderate your alcohol intake.

Alcohol is a staple of the holidays. Many of us receive it as presents. The temptation in the days following December 25th can be to drink from morning to evening. If you’re already exhausted from the celebrations, trust me, you don’t want a hangover.

5. Stay in contact with friends.

While alone time is important, it’s also important that we don’t withdraw completely. Phone that friend you’ve been meaning to call, send that WhatsApp message. This can be a lonely time of year, and staying in contact is good for you and your friends.

These tips aren’t a one size fits all, and if you do experience burnout, remember, it’s not your fault. Experiment to find things that work for you. Most importantly, enjoy yourself. This has been a dark year, we need to shine a little light into each others lives.

Merry Christmas and happy holidays.

Men, it’s okay to cry: my autistic perspective

Tonight I watched “A street cat named Bob”. The film is adapted from a book, which is the true story of a heroin addict overcoming homelessness and addiction thanks (in part) to his friendship with a stray cat that he rescued.

The film is very moving and relatable for me as an addict, and I will happily admit that when the journey was over, I sobbed in a way that I have needed to for a long time.

Why do I tell you this?

Men are raised to be emotionless walls of muscle. So often the only intimacy we are allowed is with our spouses/partners. Even then, we are often expected to be invulnerable.

This has created a world where men aged 18-50 are dying by suicide more often than any other cause of death. We need to be allowed to feel our emotions. Denial of our humanity is literally killing us.

As an autistic person, I have never really understood the unwritten social laws that exist. If I want to cry, I will cry. If I want to jump for joy and flap my hands, I will. If I want to tell my friends I love them, you better believe that I do.

Autistic people are so often told that they lack social skills, but I believe being autistic has given me a level of emotional intelligence that so many of my neurotypical peers lacked. Sadly, it made me a target for bullying throughout my life.

Back to the point.

Crying is healthy, it’s good. When we cry, we allow ourselves to feel our emotions. It is a form of catharsis. Crying lets me know if something in my life is good or bad.

How can I grow as a person if I can’t even be vulnerable with myself?

We have just been through what is probably the roughest year of the century so far. The men in our lives need to be able to process that in whatever way is natural and healthy. If that means crying, they should be allowed to cry.

We all need to cry, but for men it has been made into a social taboo. As we enter 2021, let’s normalise men feeling and expressing their emotions in healthy ways.

We need to talk about cigarettes, nicotine, and being autistic

A more up to date take on this can be found here.

Nicotine addiction is rarely talked about when discussing addiction, but it is probably the most common addiction around.

I would estimate that at least half, if not most, of the autistic people I have interacted with have been smokers at some point in their lives. Nicotine addiction is a real issue, especially when you consider the health effects of smoking combined with the already shortened life expectancy of autistic people as a whole.

With that in mind, I’m sure that you can understand why I was so frustrated to read this sweeping statement, coming out of Yale University:

“Moreover, those with ASD are much less likely to smoke cigarettes than the general population because their health tends to be more closely monitored by others.”

It is claimed in this article that the statement is based on a review of literature. I suspect that, if accurate, it was not research that has accounted for the broad spectrum of autistic individuality.

The statement echoes the sentiment of many professionals in the world of autism, claiming that autistic people are less likely to be addicts than the general population.

This is problematic, and some research has even shown that autism and ADHD increase the risk of addiction. It also minimises the impact of addiction on the autistic community.

Perhaps more worrying is the context of the statement.

The article discusses the use of transdermal nicotine patches to reduce aggresive behaviour in autistic people.

It justifies it by saying that this method of delivery makes it non-addictive. However makes no mention of the risk of physical dependence. Just because someone isn’t forming a habit/compulsive need to use, doesn’t mean they won’t experience withdrawal upon cessation of the substance.

Using nicotine on autistic people seems unfair, and I guarantee that withdrawal is going to potentiate harmful behaviours (hey Yale, you ever been through withdrawal? Well, I have, and it ain’t a picnic).

Perhaps nicotine reduces aggression because of its relaxing effects? Here’s an idea, why not try improving the quality of life of autistics rather than medicating it away. Medication is important for many people, but administering a substance with the potential for physical dependence seems unethical, especially when that person may not be able to consent, is a risky path to walk.

Nicotine addiction is a real issue for the autistic community, and I think that Yale have really minimised the issue here. I would implore them to add to the limited pool of research on addiction in Autistics before making statements like the one I quoted above.

Many of us have experienced life changing impacts from the smoking that Yale claim we’re less likely to do.

An open letter to autistic addicts

My fellow autistic addicts,

As we approach the end of a historically difficult year, I hope that you can look back and be proud that you have survived. This year has brought many tests, and you have passed. If all you did this year was make it through, I want you to know that was enough.

You are enough, you’ve always been enough. I know it’s likely that you don’t believe me. This world already misunderstood you for being autistic, let alone the spectre of addiction that hangs over us.

Perhaps you are new to the world of addiction, perhaps you have been fighting this battle for years. Perhaps you have been in recovery for years, perhaps this year was too much, and you found yourself returning to old habits.

I want you to know that whereever you are at, it’s okay. Don’t give up. This world may not always be fair and kind, but I promise you it is made all the better for having you in it.

The beauty of a new year is that we have an opportunity for rebirth. A fresh start. Take that opportunity and give it everything you’ve got. We can’t predict what kind of year 2021 will be, but we can choose to make a concerted effort to leave behind the old toxicity of the past.

Please hold on. Even if you can’t see it right now, your life has value. There was a time when I felt I contributed nothing, and now I use those experiences to benefit others. It’s a gig I will always feel blessed to have.

It’s okay if you don’t have everything figured out this year. The future shines a bright light into the dark places, bringing with it the hope of change.

Together we will fight for a world that accepts Autistics and addicts alike. It will be a group effort, and everyone contributes their part.

You are enough, you are loved, and when the world turns its back on you, I promise I won’t.

Happy holidays, and a happy new year.

David Gray-Hammond, autistic addict.

A reflection on the distance I have travelled as an autistic addict

I can’t really remember the exact date upon which the shit hit the fan for me. I know it was towards the end of 2013 and the beginning of 2014. My engagement broke up in spectacular fashion and I dissolved into my addiction like salt in hot water.

There was nothing of the real me left anymore, I was a machine, swallowing pills, snorting lines, and smoking anything I could cram into my pipe.

I felt powerless, I had no hope for being any other way. I had given up.

Over the course of the next year I found myself a patient of both secondary mental health services (the highest outpatient tier in my area) and a “client” at my local drug and alcohol treatment service. I had a care coordinator; she wouldn’t stand for the usual addict bullshittery that I was used to using on people, and through her I found my key worker (we’ll call her P) at the drug and alcohol service.

Those two people (although I didn’t know it at the time) would catapult me into a life I couldn’t even imagine.

After some time I reached a place where I was ready to admit I needed help. P got me a place in an inpatient detox program that got me free of my benzo habit. P then guided me through an outpatient detox to get me off of the rest of the drugs.

During this time, P sent an email to someone who worked for “Mind in Brighton and Hove”, a branch of the national UK mental health charity “Mind”. During our sessions P had noted my wish to take my experiences with addiction and do something meaningful with them.

The email was picked up by another person at Mind, we’ll call him R. R would be the person who would guide me into a world of advocacy.

Once I was sober and had entered recovery from psychosis, R invited me to the office. He took me on as a consultant, and rapidly I found myself sitting in commissioner meetings, helping shape the services and treatment policies that affected every addict in the city.

I was working with local authorities to map out the landscape of the drug markets in my home city, and even spearheaded a move to have a local University introduce kits for student drug-users to test the purity of the drugs they were taking.

During this time a discovered my love of writing, and this was the life changing moment.

Suddenly there was a world of people out there who might potentially hear my message. Through my writing I met many others in the autistic community and grew to the point I am at now.

I have gone from being the addict who would “never change” to being a person with a purpose. I have contributed to two books that are awaiting publication, my blog pieces and articles on NeuroClastic have been viewed thousands of times. I have spoken at online events, and made many good friends in the process.

There was a time when I thought my life was over, in fact, everyone thought my life was over, but through hard work, self-reflection, and the privilege of great support, I have found my place in the world.

If you feel like you are lost right now, it’s okay. Just don’t give up. This world is better for having you in it, and I will fight for your rights until you are strong enough to stand by my side and join the fight.

My fellow autistic addicts, you are beautiful people.

Growing up atypical and learning to accept myself

My mother used to encourage me to be myself, to be proud of myself. In many ways I was privileged for having that, and yet I still grew up uncomfortable in my own skin.

I was the weird kid. I had narrow and intense interests, I would sit in class barking like a dog, I didn’t enjoy typical sports that other boys of my age enjoyed.

The toxic standard for masculinity had never sat well with me. I laughed, I cried. I wrote poetry and enjoyed literature. Unbeknown to many people now, I was a dancer.

Since the age of 7 I had been taking five dance classes a week. Ballroom and Latin American, Tap Dance, Ballet, Jazz, and Modern Stage. I lived and breathed dancing, and was horribly bullied for it.

I also played trumpet for many years, often performing on my own or in a brass band.

As a teenager I went through goth and emo phases, wearing make-up and somewhat gender-neutral clothing. I had no need for bravado and mugging old ladies, like many of the young men on my street.

For a time I was happy being myself, being atypical; but as I got older, the attacks on me for being atypical became increasingly violent. I was put into the back of an ambulance six times in one year by the local youths. Police did nothing, apparently I brought these things on myself.

I heard that a lot. Teachers at school would often tell my mother that I was bullied because I was different, wording it in such a way that it became my responsibility to conform rather than the bullies’ responsibility to make amends for their actions.

I think eventually I became completely jaded with the world, I was disillusioned. Perhaps that (in part) is what made it so easy to fall into addiction.

I wanted to replace myself with a version of me that was more acceptable to the world. For a time it seemed to work, but with drugs and alcohol it always catches up with you.

I was diagnosed autistic in November of 2016. It was a life changing moment for me. Finally I had proof that I wasn’t broken. Sadly I admit that it still took some time to accept that, and I was desperate to be “cured” for a time.

My life turned around when I found the autistic community. I still remember the moment it happened. I had published an article about MMS abuse, and Emma Dalmayne (a rockstar amongst those campaigning against quack treatments) added me on Facebook and invited me to her group “autism inclusivity“.

Around this time I also discovered the work of Chris Bonello at “Autistic Not Weird“.

From there the pieces fell into place. I learned to love who I am again, something that I thought I had lost. I will forever be grateful to Emma, Chris, and the autistic community for helping me find myself again.

Self-acceptance has been vital in my recovery from addiction and psychosis. The autistic community gifted me that, and that’s why I advocate now. I want to give back to a community that has given so much to me.

If you’re new to this community, you’re probably scared right now. There are a lot of do’s and don’ts in this community and it’s a huge learning curve, but it is so worth it. Stick around and learn about yourself and your fellow Autistics. I promise you that you won’t regret it.

The first step to a happy autistic person is self-acceptance.

I am autistic, I am an addict, I am mentally ill

As self-advocates, we are often met with suggestions of how we should discuss ourselves. It’s deeply frustrating because it suggests that we have forgotten our own humanity, but unsurprisingly, we do not need to be reminded that we are people.

You will hear me use identity First language a lot. This is not because I have forgotten my personhood, but because these things encompass a huge part of my identity.

I am autistic, I am an addict, I am mentally ill (in fact previously psychotic).

All three of these things lend a great deal of definition to how I perceive and interact with the world. They define a core part of my psyche, and to deny that means to deny a huge portion of what it means to be me.

Being autistic affects how I relate to people and experience the world. Being an addict affects how I socialise. My psychotic features show me how malleable my reality is.

I am all these things (and more). I am disabled by these things and enriched by them. It’s okay for these things to be a part of my identity. By the sum of their parts, they make me into the person that I am today.

I spent a long time trying to deny the profound effect that these things have on my person, but you can only live in denial for so long. In order to grow and change as a person, I have had to accept these parts of me.

If you are like me, it’s likely that people have tried to convince you that parts of your identity are separate and removable. Perhaps using euphemisms such as “special needs” and “differently abled”.

I suspect that if you are like me, you find this deeply invalidating and frustrating.

When we embrace ourselves, our total selves, and stop trying to separate out our parts like ingredients in a cake, we can appreciate the beauty in our diversity (and your diversity IS beautiful).

When we allow ourselves to accept the things that make us individuals, we add to that beauty. We are a tapestry of vivid hypercolour, with each stitch connected to the next.

Stand proud in your identity, and don’t let people tell you that it is wrong. I am me, and that is beautiful.

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.

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