Drugs and Autism: part II
Gradually I am learning who I am underneath all the pretending.
Hi readers,
I’m returning to substance abuse and autism, because increasingly I’m realising what a big issue this is. Lots of you have been in touch (thank you!) to tell me you too have relied on substances, including booze, and have gotten into trouble with them too.
There is an increasing interest in this topic, and I’m involved in a few research projects that bring these fields (booze and autism) together. Next weekend I’m reading a paper at the Drinking Studies Network discussing the connection between drinking and autistic masking, and I’ve also been commissioned to write something for Alcohol Change.
Because it turns out that not only do drugs and alcohol work like a charm on many of us, but we are also more susceptible to addiction. Once I’ve finished my paper, I’ll share some of the research I’ve found, but it’s pretty compelling. How much has alcohol helped you to fit in with the neurotypical world? How much has it numbed your sensory issues?
I feel pretty confident that if I hadn’t gotten sober, I wouldn’t have realised I was autistic. Because the booze was so effective, both at helping me fit in, dialling down my social anxiety and numbing my general discomfort in group settings.
Did booze help me mask my autism, even from myself? Was my dependence on alcohol a part of the reason why my diagnosis came so late? And might there be others like me in the same situation?
It’s a strange realization to have in your late thirties that you have been hiding in plain sight for most of your life. Without realising. Or not consciously. Knowing and not knowing at the same time.
But it was this revelation that led to my diagnosis. Learning of the autistic female’s tendency to ‘camouflage’ and ‘fly under the radar’, I awakened to the possibility I could be autistic. I was 37 and reading a leaflet about how girls work hard to mask their difference in order not to draw attention when I realized with a sad pang of inspiration that I’d been doing this all my life.
It started early: watching what the other girls did, and doing my best approximation of it in a game of catchup never stopped. No wonder I was exhausted. It takes a lot of energy to read the room and act acceptably, with little innate understanding of the general rules of human engagement. To change yourself to fit every new group you are trying to be part of takes strength, commitment and flexibility. It also takes a chunk of your spirit and impedes forming a stable sense of identity, too.
Friend of this newsletter, Predisposition, wrote a fantastic piece about this earlier this week: Autism and acting. He really captured the discombobulating experience of being found wanting by people you have only ever tried to please. (I don’t mean to demonize NT people here, only to show the struggle for understanding we can experience across styles of being.)
I wrote about the experience of masking without knowing I was masking at my blog about getting sober, Beautiful Hangover.
“I pictured myself as a teenager, scrabbling to fit in. Aware of a strange blankness inside where other people seemed to have preferences and opinions and ideas. I watched the humans intently and learned from them, like an anthropologist or an alien (or an alien anthropologist). I copied my friend's clothes, mannerisms, and interests, but I could never lead. They had an ability to improvise that I was lacking. I was always on the backfoot.”[1]
I still get it wrong often. People laugh at me a lot, and mostly I try to laugh along, but often I don’t get the joke. Sometimes I act the clown to cover up how confused I am, but more recently I have started asking what’s funny. Making people laugh is one of my favourite things to do, even if I don’t quite understand how I managed it. So long as the laughter isn’t mean-spirited, I can enjoy it. And these days, the laughter isn’t mean-spirited. Because I’ve found my people.
Things are different now, better, but as an undiagnosed autistic kid, the laughter wasn’t always compassionate and affectionate. It grew more difficult each year to keep up with my peers. Like Predisposition, I didn’t realize I was masking, but learning about autistic masking explains the confusion and bewilderment that has been the soundtrack to my life.
The metaphor of the swan sailing along smoothly while webbed feet scrabbling madly fits. Except, picture a sweet little duck, going in circles.
Is it any surprise then, that by 11 I was drawn to alcohol and other substances? Lighter fluid, deodorant through a sock. Holding my breath and letting friends push on my chest until I fell unconscious. I was first in line for all the innovative ways kids find of getting high before they have easy access to alcohol. Though, actually, I had access to booze early, too. My family love to drink, and it was clear alcohol was an essential part of life. Alcohol was my destiny like it had been the destiny of many of my foremothers and forefathers.
The lightest touch of peer pressure and I was ready to try the concoction my friend had made: Castaway mixed with Diamond White. Blastaway, she called it. And we did! It was life-changing. Suddenly, I was able to join in. To enjoy myself with a group of cool kids. To talk to people. I shifted from the goodest of girls to the bad influence, initiating new recruits to this wonder-pop I’d found.
Alcohol was personality-enhancing social currency. By 13 my drinking had become problematic. Run-ins with older boys and the police meant that the playfulness of earlier drunks were MIA. Nights often felt scary and brutal. But still, I returned. Around 17 my alcohol and substance abuse looked set to derail my education.
I was lucky. Those older boys had always said I was prim and proper, and they were right. My mum stepped in and helped get me back onto some kind of track. I made it to university where I continued to flounder, but also made good, kind, wholesome and creative friends. I stopped taking drugs and found a degree I loved. After graduation, things nosedived again. I missed the structure of studying, and found myself oddly unqualified for any job. What jobs were there for people who couldn’t talk to people without alcohol?
Maybe I will just have to become an alcoholic, I wrote in a diary from that time.
And I knew, absolutely, that I could not thrive in the job market. I wasn’t even sure I would ever get a boyfriend. How could I when I couldn’t spend time with people sober? Social anxiety made group experiences, without the buffer of alcohol, feel like a special kind of torture, and I avoided them as best I could. I didn’t do breakfasts or cake, just the pub and parties or walks and activities that ended at the pub and parties.
Instead of wasting time applying for graduate jobs, I asked for more hours at the restaurant where I’d worked part-time to support my studies. There I found another hedonistic crowd, including my first heavy-drinking boyfriend. I discovered I wasn’t the only one who struggled to function without alcohol. The next years are a blur of parties and dancing and hangovers and breakdowns.
Drinking seemed to be the one thing I could do really well. No, drinking and writing. I committed to being a writer because I didn’t believe I could do anything else. And I mastered it. At 27, after finishing a booze-fuelled Masters in Creative Writing from UEA, I got a book deal with Simon and Schuster.
In 2013 I published my first novel, Infinite Sky, and I wish I could say that finally I found my footing. But the truth is that the new playing field I’d entered was impossible to keep up with. The things that had tripped me up all my life continued to trip me up, only now the stakes were higher.
After some increasingly serious mental health issues, a dear friend encouraged me to go to the doctor, which nudged me onto the path towards healing. A year or so later, I went to AA and got sober. Life got better, but it would be five more years before I was diagnosed autistic.
I’m sad about all the time I lost. Who might us late-diagnosed babies have been with more guidance and support? I have found work and relationships that work for me (finally) and I’m trying to discover who I really am, underneath all the layers of masking. I’m hopeful for the future. But there’s still a lot of grief about the past. Not grief that I’m autistic, but that I didn’t know. That I was misunderstood, and that I misunderstood myself. For decades.
Like many autistic women (all?) I experienced bullying, abusive relationships and adverse sexual experience during this time in which I struggled to live, knowing nothing about why life felt so difficult, and alcohol and drugs were my primary coping mechanisms. More accurately, they were my medicine.[2]
And I know I’m not the only one. Not only because of my research but because some of you have written to let me know. Thank you for that.
Consistent masking, as well as drinking, has left my identity woefully undeveloped. But I’m working on developing it. Inner child work works. Making my own dreams come true works. Listening to my body works. Staying sober and feeling the discomfort of pushing myself works.
Gradually I am learning what I can tolerate and using this information to change my lifestyle. Slowly, I’m learning to listen to myself and take my needs seriously. I hope that reading about my efforts can help you do more of the same.
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You can connect with the Autistic community on Twitter. If you have a question, use #ActuallyAutistic or #AskingAutistics (or both). You can also visit The Autism Self Advocacy Network and the Autistic Not Weird Facebook page and website.
Chelsey Flood is the author of Infinite Sky and Nightwanderers, and a senior lecturer in creative writing at UWE University. She writes about freedom, addiction, nature and love at Beautiful Hangover, autism and self-compassion at Polite Robot, and is also working on a non-fiction book about getting sober, and a new YA novel.
[1] Alcohol Allowed Me to Hide My Autism (Even From Myself), Beautiful Hangover, Flood, CJ
[2] Cridland EK, Jones SC, Caputi P, Magee CA. Being a girl in a boys' world: investigating the experiences of girls with autism spectrum disorders during adolescence. J Autism Dev Disord. 2014 Jun;44(6):1261-74. doi: 10.1007/s10803-013-1985-6. PMID: 24221816.
Thank you so much for this. You are bringing me a lot of insight here. I'm very interested to read the research and your upcoming writings. One big difference in our childhood/teenage experiences is that I didn't discover drugs or alcohol as a teen because I was so socially isolated (I now realize because I was autistic). Instead of drinking, I spent time alone (often not happily). I had some creative outlets but mostly watched TV. When I finally met a good group of people who felt like friends late in high school, they were all the punk kids and they were straight edge - fiercely anti drugs and alcohol. If they had not been a sober group, I do wonder what would have happened. High school for me was in the early-mid 1990s, and at that point I don't think there is any chance I could have discovered I was autistic in terms of how diagnosis worked back then. But, wow, once I found alcohol late in my college career, it changed everything. And I've been using it ever since to do just what you write about here - enable me to function in the "normal" world. For me the pandemic was the big revelation - It was much easier to avoid drinking excessively without the social situations that encourage me to drink a lot. Even though I didn't stop drinking all together, I reduced enough that I could see things more clearly and I think got to see myself in a new way, which eventually led to seeking a diagnosis.