Autistic addiction advocacy: A lonely endeavour2 min read

The world of addic­tion advo­cacy can be incred­ibly bleak at times, but even more so in the autistic com­mu­nity. So few people are talking about autistic addicts; some­times it feels like screaming into the void.

Being an addict is an incred­ibly lonely life. In or out of recovery, we are fighting a battle with a mind that con­stantly seeks to harm us. I never imag­ined that I would face a sim­ilar lone­li­ness as an addic­tion advo­cate.

Addiction advo­cacy is such an impor­tant topic for the autistic com­mu­nity. We are a group that has been con­sis­tently alien­ated by society, with many autis­tics that I have met talking about using drinking and drugs as a coping mech­a­nism. This has ranged from casual drinking and self-medication with cannabis through to more con­cerning dis­cus­sions of addic­tion to sub­stances that are known to cause a great deal of harm.

Despite the preva­lence of drug and alcohol use in the autistic com­mu­nity, many remain silent on the topic of addic­tion. This silence breeds an envi­ron­ment where the insid­ious dis­ease of addic­tion can kill our friends and loved ones.

It might seem like I am being hyper­bolic in my speech, but addic­tion is lit­er­ally killing people the world over, every single day.

The silence becomes most obvious when you look into the world of sub­stance misuse treat­ment. This is a world that has never even con­sid­ered the exis­tence of (or dif­fer­ences of) neu­ro­di­ver­gent addicts, let alone con­ducted research on it.

Honestly, this doesn’t sur­prise me; in order for treat­ment policy to notice us, we would first have to break the silence. How can we expect to be heard on this topic if we never talk about it?

Of course there are many legit­i­mate rea­sons why people may struggle to talk about addic­tion. I have cov­ered some of these rea­sons in my article Issues with addic­tion advo­cacy in the autistic com­mu­nity; despite those issues, we must get this con­ver­sa­tion going; the lives of so many autis­tics depend on it.

People’s lack of interest in this topic leads me to believe that per­haps they think they are immune to addic­tion, but the truth is that addic­tion can come for anyone. Addiction knows no bound­aries. For this reason, I will always stand and be heard as an autistic addict, even if I am the only person doing it.

I have a per­sonal mantra for topics of mental health and addic­tion: “Open com­mu­ni­ca­tion is key to recovery.” Talking is healing, and we must keep talking until others are lis­tening. I promise every autistic addict reading this, I will not be silent, I will keep talking until the world recog­nises that you are here, and then I will talk some more.

David Gray-Hammond
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  1. I am an undi­ag­nosed 69 year old who self iden­ti­fies as autistic. I have been sober for over ten years after spending many years using alcohol to feel “normal”. Not long after I got sober a thought came to me in a rush and that thought was, “well, I am sober but I will never be “okay”. I will never be “fixed”.” Only recently have I come to the view that it is my autism that won’t change and, finally, that it shouldn’t. All my life I have tried so hard to act neu­rotyp­i­cally, to keep up with neu­rotyp­i­cals in my life. Now, at my age, I am exhausted and burned out. After reading many of the arti­cles pre­sented here (which I started doing to better under­stand my grandson who is diag­nosed) I have come to realize that my idio­syn­crasies do not exist in a vacuum.
    Looking at my child­hood, a con­glom­er­a­tion of rocking, head banging, spin­ning and being told to act nor­mally, I grad­u­ally began to under­stand my rela­tion­ship to the spec­trum. My mother called me a non­con­formist, even a bad seed, but she let me spin, God bless her. She had a sense of how badly I needed to do it. I am one a seven chil­dren. Middle child and a highly verbal girl so no con­nec­tion to autism was made of course.
    There are many more clues but I’ve blabbed enough for now except to say that, yes, we are at risk for addic­tion, sui­cide and the whole of it.

  2. Weirdly enough the first person to sug­gest I was on the Spectrum was a man on an “AA for Atheists” forum. I was writing (searching for solace) after attending my cous­in’s birthday at a winery where people kept handing me glass after glass of wine and I was blaz­ingly drunk. I had been stressing, dreading and obsessing over the occa­sion for about 2 months before­hand and (as expected) I got out of con­trol and said things to my rel­a­tives I shouldn’t have — until then I hadn’t seen most of them for years because I self-exiled myself to the oppo­site coast. When I wrote on the AA forum I was feeling sui­cidal and his sug­ges­tion that I was autistic felt out of the blue but at the same time caused a light bulb to go off.

    That was 10 years ago. I can’t afford a diag­nosis but at age 54, after tons of research, I totally self-identify as autistic. It’s been a HUGE relief to finally know why I am the way I am and I’m much kinder to myself because of it. To me tt explains my chronic use of alcohol (though I also have a hered­i­tary com­po­nent) and spo­radic use of other sub­stances as coping mech­a­nisms — when I dis­cov­ered alcohol at age 13 it was the first time I felt “normal” and it allowed me to have what I thought was a “normal” social life.

    40+ years later I still have issues around drinking and am finally, truly real­izing using alcohol does not serve me and has taken a toll on my health and emo­tional well-being. Thankfully, bless­edly, I fully rec­og­nized the dan­gers of my drug use in my 20s and was able to stop and never look back. I have cut way back on my alcohol use as well, though my con­sump­tion is still not healthy (my goal for 2020!).

    I have always been sur­prised at the lack of dis­cus­sion on autism forums about this. I’ve started con­ver­sa­tions about it where only a few people were willing to par­tic­i­pate but have always sus­pected there are A LOT more of us out there.

    David, keep on fighting the good fight. Thank you for your article. Please know that you’re not alone.

  3. Addiction recovery sup­port is only one of the MANY kinds of groups that the autistic com­mu­nity cur­rently lacks that could be extremely useful, to many of us, if only someone would orga­nize them. The autistic com­mu­nity is, in gen­eral, vastly under-developed as an orga­nized sub­cul­ture.

    Of course, orga­ni­za­tional under-development of the autistic com­mu­nity is only to be expected, given our social and exec­u­tive func­tioning impair­ments.

    But, despite these impair­ments, SOME of us CAN do a rea­son­ably good job of leading small groups. Some of us are much better at leading small groups than we are at, for example, par­tic­i­pating in unfo­cused multi-person chit chat. (I’m ter­rible at the latter, but I facil­i­tate a small local autistic peer sup­port group here in NYC.)

    IMO what the autistic com­mu­nity really needs is lead­er­ship training. With more of us trained in how to lead small groups, we could do a LOT more for our­selves as a com­mu­nity, including addic­tion recovery sup­port groups. And then, if such groups were to form, hope­fully they could influ­ence the psy­chother­a­peutic estab­lish­ment to give us more of the kinds of sup­port we need, too.

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