Recent research indicates that many autistic people might have co-occurring substance use disorder. Let's talk about what this entails and reasons for autistic folks turning to substances in the first place.
Topics discussed also include:
If you'd like to know more about topics discussed in this episode, check out:
"Autism and Co-occurring Substance Use" by Espen Ajo Arnevik and Sissel Berge Helverschou
"Systematic Review of Risk and Protective Factors Associated With Substance Use and Abuse in Individuals With Autism" by Madelaine Ressel et al.
Episode intro and outro music: "What Goes Around Comes Back Around" by NIGHTCAP
The Other Autism theme music: "Everything Feels New" by Evgeny Bardyuzha.
All episodes written and produced by Kristen Hovet.
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Today I'm answering a listener question that I received back in November. But I'm still working through my list of questions. This question comes from a listener who noticed that so many folks in substance use recovery circles receive an ADHD and or autism diagnosis after or during their recovery process. This listener wanted to know why that is. There are two parts to this question that I'll try to address. One, there's the association between neurodivergence and substance use. And two, there's a sort of time based link between entering recovery and receiving an ADHD and or autism diagnosis. While the question included both ADHD and autism, my focus here will be on autism. I do talk a little bit about ADHD, but definitely the focus will be on substance use and autism. Alrighty, let's get into it.
I've said this in previous episodes, but I think it's important to repeat here, especially here with this topic. I am not a medical expert. I am in research communications. And I'm in my final year to get my Master of Health Studies degree with a focus on health research and policy. But I'm definitely not a medical expert. I'm not a healthcare provider. So what I say here, while based on medical research, needs to be taken as non expert content. If you or someone you know is struggling with substance use, please seek help from a qualified health professional. I'm also going to share some opinions here, specifically later on, and want to be clear that my opinions are separate from the institutions and organizations with which I'm involved in a professional and or volunteer capacity.
Let's start by defining our terms. So a substance, in the psychological context, is anything with psychoactive effects. What do I mean by psychoactive? Anything that is psychoactive impacts the nervous system and leads to changes in thinking, behavior, and mood. A psychoactive substance can include alcohol, cannabinoids like what's found in marijuana, opioids, hallucinogens, and even nicotine, and so on. Obviously, there are many, many types of drugs. I think it's important to make a distinction between substance use and substance use disorder because a person can occasionally partake in substances or, you know, overdo it with substances, but not actually have a substance use disorder. For it to be a disorder, the substance use needs to really impact a person's life and many spheres or areas of their life, such as work and or school life, social life, family life, mental and physical health, finances, and so on. It touches every aspect of their lives. A substance use disorder, or I'm going to say SUD for short because that word just, I'm gonna say it a lot so I think SUD is a good abbreviation. So SUD is defined as a mental health condition characterized by the habitual and chronic use of substances, such as alcohol, tobacco, cannabis and or other drugs, which leads to significant impairment and distress. The emphasis here is on the compulsive use of the substance in question or substances. The DSM or Diagnostic and Statistical Manual of Mental Disorders, splits SUD symptoms into four categories. They are impaired control, social problems, risky use, and physical dependence. Let's break those down a bit more and just define them a bit. So impaired control is not being able to control use of the substance. The person uses when they don't want to or they use more than they intended. They often feel like they want to stop using the substance but they just can't. Social problems include neglecting or avoiding one's usual responsibilities, and even friendships and other relationships because of the influence of their substance or substances of choice. Their lives might look very different than they did before this substance use disorder began, and they may struggle to complete tasks and goals that they otherwise would really want to accomplish. Risky use involves using substances in potentially risky or dangerous settings, and the person continues to use even in the face of mounting problems directly associated with the substance use. And lastly, physical dependence involves requiring more of the substance to get the same high or psychoactive effect. This is often called tolerance. One major sign of physical dependence on a substance is the appearance of withdrawal symptoms when one stops using even for a relatively short time. For example, those who have physical dependence on alcohol may develop tremors or shaking when they stop drinking. This can lead to generalized tonic clonic seizures, formerly called grand mal seizures.
Okay, so let's get into talking about substance use disorder and autism specifically. Unfortunately, screening for SUD is not often part of routine clinical autism assessments. Although, from what I hear, it's slowly starting to catch on and it's becoming part of the thing that they screen for. Clinical and research experts suspect that substance use disorder is a common co occurring condition with autism, but that it's way underdiagnosed. It's also suspected that typical interventions that we currently have for SUD may be unsuitable or unhelpful for autistic people. Most treatment options are group based. I mean, think of AA. Group interventions may not be the best way to assist autistic people in these circumstances, and may actually increase anxiety, which has been known to drive or increase problematic substance use in the first place. Some suspect that autistic people may be more likely than their non autistic peers to drop out of treatment for these reasons, or not even start to begin with. That said, more research is needed to confirm these suspicions. Recent research I looked at estimates that up to 36% of autistic individuals may have a co occurring substance use disorder, though some think the prevalence could even be a lot higher. For comparison, in Canada, approximately 22% of the general population experiences SUD in their lifetimes. In a study of 27,468 individuals, the risk of substance misuse was six times higher in autistic participants than in non autistic participants. Early research and clinical findings on this subject indicated that substance use disorder was rare in autistic folks, but newer findings have shown the exact opposite to be true. This may have to do with the fact that so many more people are being diagnosed with level one autism, especially in adulthood. And some research suggests that individuals diagnosed as level one autistic are more likely than those diagnosed as level two or level three autistic to develop a substance use disorder. Those with a high desire or need for social interaction and a high social interest are far more likely to report substance misuse. Additionally, the research indicates that autistic individuals with intellectual disability and or those who are diagnosed at an early age are less likely to develop substance use disorder.
Interestingly, a large high quality study looking at 123,543 people found that the risk of substance misuse was highest among autistic individuals who also had ADHD. Also, autistic folks with co occurring mood disorders and or anxiety disorders had increased risk of SUD. Examples of mood disorders include major depressive disorder and bipolar disorder. And examples of anxiety disorders include post traumatic stress disorder, generalized anxiety disorder, and obsessive compulsive disorder. Reasons that autistic people usually give for beginning to use substances include wanting to forget their problems, suppress feelings of insecurity, increase feelings of confidence, improve low mood, reduce anxiety, improve social skills, and so on. Interestingly, many autistic individuals claim that their SUD caused a delay in their autism diagnosis. I guess because the substance use was the predominant clinical presentation, and also masked some autistic traits. The top substances of choice reported for autistic people include tobacco, alcohol, and cannabis.
In the general human population, it's widely known that while many factors underlie the development of substance use disorder, including genetic and environmental factors, adverse childhood experiences play a huge role in increasing risk of SUD. The same is true for autistic individuals who, research also shows, experience more adverse events and more interpersonal adverse events over their life course than non autistic individuals. And this is, of course, generally speaking. You can indeed have a non autistic person who has experienced more adverse events than an autistic person, just as you can have an autistic person who has miraculously been unscathed by such experiences or has never experienced them. I have yet to meet such an autistic person, but we can imagine that they're out there. So when I'm talking about these kind of things, it's definitely at the population level, at the general level. There's obviously always exceptions to the rule.
In terms of the connection between entering recovery and then receiving an autism diagnosis, I'm not aware of research on this, but I know from some clinical accounts and anecdotal evidence that if a person has reached adulthood without being identified as autistic, it often takes a life crisis or some major event to lead them to the information that eventually takes them to considering getting an autism assessment. For me, this was certainly the case. I was diagnosed with cancer in 2015, which led to a huge upheaval of like all aspects of my life, and led me to question just about everything. It also increased my stress levels substantially, to the point where I was suddenly unable to mask, literally unable. But, of course, I didn't have the terminology about masking back then so didn't even know I had been masking virtually my entire life. I had no idea, no, no idea what was going on with me. I just wondered why on earth I couldn't talk all of a sudden, or suddenly unable to string words together in coherent ways. And that's just one of many examples. It seemed that all the little props and supports I'd fashioned in my own life, as unconscious ways and strategies to fit in, weakened considerably or completely fell apart. One thing led to another and I actually can't take credit for identifying myself as autistic as others have. That was the work of a therapist I started seeing for post cancer related trauma stuff. Her message to me was really, you clearly have PTSD, but there's something else going on here, too. Did you always have these sensory issues? Did you always have these challenges with getting exhausted so easily? Which, by the way, we now know was autistic burnout! Did you always have these challenges in social settings? Yes? Honey, you may want to get assessed for autism! She didn't call me Honey, thank goodness, and she didn't actually say it in those exact words, but I think you get the idea. This therapist's grown child was autistic, and she saw a lot of similarities in me and her child. That started the ball rolling. I found a psychologist who specializes in autism assessment, and sure enough, autism.
Okay, well, that went into more detail than I had planned. What I'm trying to get across is that it's very, very common for an autism diagnosis journey to begin after something very life changing, or even totally devastating, has happened. A death in the family, a serious illness, moving out of the family home for the first time, which can be really disruptive and terrifying for some, a breakup, heck, even a marriage! And something very life changing can include substance use disorder and or recovery from said substance use disorder. All too often, autistic people begin to use substances as a way to cope directly with autistic traits and challenges in a world that far prefers neurotypical traits and challenges. Some of the challenges that autistic folks face nearly every day can include constant sensory irritation and overwhelm, that leads to severe anxiety and physiological distress, commonly referred to as the fight or flight response. If you're nearly always in fight or flight, heck yes you're going to want something to soothe that. Research I read in preparation for this episode indicated that two groups of autistic individuals are most likely to begin using substances in a way that leads to substance use disorder. These groups include, number one, adults who are not yet diagnosed or who are late diagnosed. And number two, diagnosed autistic adults who are not taking any psychoactive medication, such as anti anxiety medication, or antidepressants. In other words, there's clearly self medication going on.
I'd hazard a guess that if we lived in a society that was less ableist, more kind to our senses, more accepting of a variation of social behaviors, and truly accommodating of various neurotypes, substance use disorder prevalence in autistic populations would decline rapidly. But, as it stands currently, there's not one neurodivergent person I know, including those with ADHD, who have gone through life without pretty significant abuse and or mistreatment at the hands of neurotypicals, who are not compassionate or empathetic towards us. Not one. We've all been mistreated, sometimes horribly, and severely, and for long periods of time, simply on account of our differences.
Okay, Editor Kristen stepping in here. I realized that when I said this about neurotypicals, it might sound like I was making a general statement about all neurotypicals. And I wanted to be very clear, or make it very, very clear that I'm not talking about all neurotypicals. And I certainly do not want to paint all neurotypicals with one brush. Just as we neurodivergent folks don't like to be generalized or painted with one brush, it's not fair to neurotypicals to turn around and do the same. What I was trying to get across here, and I don't know if I did it very well, was that a lot of the difficult interpersonal experiences that we've had, is at the hands of neurotypicals. And sometimes it's behaviors that are not intentional on the part of the neurotypical person. It can just be based on ignorance, not knowing, not understanding, it can be what has been called microaggressions building up over time, snarky comments, jokes made, different things said, again, out of total ignorance. I want to make it clear that I see neurotypicals as, generally speaking, mainly allies, and a lot of my friends are actually neurotypical. So I don't want anyone to take this the wrong way because you can turn this around, too. A lot of us have also been mistreated by other neurodivergent folks. I don't want to be polarizing in what I say, I don't want to talk in sort of black and white or absolutist terms, just to make that very, very clear. That's all I have to say about that. Let's keep goin'.
We shouldn't be needing to self medicate just to feel better in this world. That's just wrong. And for transparency's sake, I've never been diagnosed with a substance use disorder myself. I've never been physically dependent on a substance. But I have watched others close to me struggle with these things. I've also heard a lot of stories of family members, and friends of family, and friends of friends going through these things, and I've built up these stories and experiences in my head. So I think that's all led to significant fear of substances in general, which has likely in some ways had a protective effect. I personally enjoy vodka sodas on the weekends, but I placed strict limits on myself. I dislike the word addiction, and I refuse to call people addicts. But I'd say if I had a dependence on anything, it would be on working long hours and perhaps on exercise. I think another protective factor for me is the fact that I have mast cell activation issues. I react badly to things like cigarettes, marijuana, and probably other things that I've frankly been too terrified to try. I haven't touched anything stronger than prescribed prescription medication, and I even react to many of those, so yeah. And I think it's worth saying, as I haven't discussed this before on the podcast, I was assessed for ADHD at the same time I was assessed for autism, and I don't have ADHD. However, ADHD traits and diagnoses do run on one side of my family, that I know of.
Before I say goodbye, I want to thank those of you who have written in offering your time for an interview. I really appreciate your willingness to share your story, and listeners love to hear them. For those of you still sitting on the fence about whether or not you want to be interviewed, I have two reminders for you. Number one, you can be anonymous in these interviews or use a pseudonym. And number two, I edit episodes to remove long silences and some ums and ahhs. The reason I say this is because people are often interested in being interviewed, but they're scared about how they'll sound in the finished product. I want you to know that I make the interviews as pressure free as possible, which includes giving you the option of turning your video off, taking breaks, and taking as long as you need to respond to questions. I've found that some have wanted to see the questions ahead of time, so I've begun to provide those who ask with the questions ahead of time. But note that I often have questions that come up while listening to you as well, so I typically stray quite a bit from my list of questions at times. You also have the option to pass on any question you don't want to answer. The other thing I should mention is that I give all guests the option of changing their mind after our interview. And by this I mean you can let me know if you want a certain section left out, or you can write to me with additional notes to add, to clarify something you've said, and I can read those as part of the intro or insert into the recording where appropriate. The only real requirement you need to be a guest on The Other Autism podcast is to be interested in sharing your story.
I also want to thank all of those who write me emails. I have started to receive emails every other day, sometimes daily, with thank you messages and with stories about your autism journeys. They're amazing and they just, awww, like it's the best thing, the best, best thing about making this podcast, seriously! The best thing about making this podcast has been getting to know people I interview and it's been reading your emails. I want you to know I read every single word of every single email. But I'm currently not able to respond to all of them at this time. I do save all of them. Like I said, I read all of them. But I just want to leave you with that message that I so, so appreciate hearing from you. And it's truly a treasure that you open up to me and you want to share your stories. I am so moved. So grateful for all of you. And that's all I have for you today. Thank you so much for being here. Until next time, bye.