Feature Issue on Addiction and IDD

I am not a person who has been afforded second chances. I am a person who was bred into poverty, ignorance, and defiance. Homeless at 12, I became self-sufficient at a very young age. This is not a story in which I want you to take pity. Use whatever feelings that arise as instructional towards advocacy.

Author Sam Gardner.

When I say entering treatment for substance use disorder was my last chance at life, I mean it literally, and I do not say it lightly. I was out of options. It was a decision made in desperation— one final attempt, one last measure to ensure that I had tried every possible route to make this terrible, depressive life into something worthwhile. I could not afford to walk away from treatment simply because the structure was not suited for someone like me, someone with autism spectrum disorder.

I am a first-generation college student, and now I am a graduate student. I am one year shy of completing two master’s degrees: one in epidemiology and the other in social work. I rarely disclose my autism or substance use diagnoses, as there is still stigma associated with each diagnosis, especially in the field I am entering: a field in which I aim to move the needle a little more towards equitable substance misuse treatment for all.

Hope is not a word, a theory, or an ideology that is integrated into my being. Perseverance and grit (shoutout to Angela Duckworth) have kept me alive as well as given me a sense of determination for the research I am doing. I aim to develop effective substance use disorder interventions for people who are autistic. Some research has shown that autistics have a higher risk of developing a substance use disorder compared to the general population.

Nobody gave me the audacity to attempt to adjust substance use treatment modalities. I simply had such awful experiences that I think I cannot be the only autistic to experience such deprivation. As I mentioned, I was desperate; I needed treatment to work. After a lifetime of not having adequate resources, I am in a unique position to fight for equitable substance misuse interventions for people with autism, even though this need is not often recognized in the United States. It is an uphill battle, one for which I am particularly suited.

While waiting for an inpatient treatment bed, I was told I had to wait six weeks. My drug of choice is alcohol. I started in intensive outpatient care while I waited for a bed. I was informed that I could go to detox treatment in the meantime. It seemed absurd to me that they wanted me to detox from alcohol, but then afterward I’d be placed right back in the same environment where I was before entering detox, and I knew I would resume drinking immediately if this happened. I fought the notion that I should enter detox immediately, and pushed and pushed until the organization agreed that I would detox once an inpatient bed was available. In their defense, I imagine the agency’s staff was following a checklist. I seemed to be outside the natural progression of their checklists. I advocated for myself to the extent where I would still receive some type of services.

The intensive outpatient program was awful. It was a place in which I was forced to fill out booklets on very basic information surrounding the biology of substances’ effects on the body, as well as our feelings about it. Then we had to share them with the group. I am an evidence-based, research-driven person. It is not useful for my understanding of my internal landscape to listen to other peoples’ feelings. It’s not that I can’t sympathize, but the group dynamic was not useful to me. These measures seem to be effective for some. But for me, I had studied all of this while in undergrad and found the program's section about feelings to be misleading and counterproductive to understanding the structural drivers of substance misuse. The facilitators would not answer my questions about why these exercises were necessary, except for saying, “It’s useful to gain insight into your motives.” I knew why I drank. I needed help not drinking. I didn’t need to fill out what felt like a Dr. Seuss rendition of my motives. It was not useful and was aggravating. But it was a requirement while I waited for a bed to become available.

This may be a good place to mention that the town I lived in only had one option for treatment, and I knew I would fail if I entered into it, so I went to a town 40 miles away that had better options. I did not know anyone in the town, but my dear friend drove there for work every morning. This is important because in order to remain eligible for inpatient care, I had to be in this town Monday through Friday for the different requirements. This meant that I had to quit my job and end the lease on my apartment. If I wasn’t working, I couldn’t afford rent. I effectively made myself homeless while I was waiting for a bed to open for someone like me (an alcoholic) to remain eligible for inpatient care. When I said this was my last option at life, I wasn’t kidding. I did whatever was necessary to get to that inpatient bed.

Once in detox, I asked a bunch of questions, and the staff grew more intolerant. People don’t like when I question their motives. It’s not that I discount the utility of an intervention, but knowing the why and the research supporting it is extremely important to me. I have since learned that this is a characteristic of my autism. The staff were barely paid above minimum wage. They didn’t know the answers to my questions. I can recognize that now. However, what I still see as unacceptable is the defensiveness towards me for simply asking why.

The defensiveness of staff followed me into inpatient treatment. Again, I had no other options. I was homeless outside those walls and had no money or resources if I chose to leave. This had to work. And yet, it was awful. I was told to look inwards, but when I showed up authentically, without masking, I was treated with such hostility by the staff. Eventually, after a few months, the staff learned that I wasn’t asking questions to demean them, but truly for understanding. But how many people will stick around long enough to understand this under such terrible conditions, autistic or not? The staff grew to appreciate the analytical framework in which I operated, even asking for my input. Upon “graduating,” I formed an intra-agency subcommittee to address disparities in treatment for those with autism. The leadership of the agency grew to appreciate my insight and my tenacity for research-driven approaches.

It was incredibly difficult to get to that point. I have found with many providers that I must gauge their emotional responses and act accordingly for self-preservation. When I am not masking, people tend to have a difficult time with my direct approach. Regardless, if that’s how client-provider relationships are supposed to work, that is the bulk of my experience. Thankfully, most of the people in this treatment facility were also in recovery, which I think helped them to be open-minded and to not dismiss me entirely. But I wasn’t giving up. I thought about leaving so many times. Treatment for substance misuse is hard for everyone. I think there might have been added layers of difficulty because of my autism, as well as the level of poverty in which I operated.

I don’t think people need to be in such deprivation to complete treatment. Fewer than 41% of people who enroll in treatment programs complete them, according to treatment episode data published in 2019 by the Substance Abuse and Mental Health Services Administration (SAMHSA). I wonder how many people with autism leave treatment prior to completion because the structure tells us that our behavioral manifestations do not fit the prescribed mold? I have over five years of sobriety, starting the day I entered detox. I am an outlier in many ways. But I think this unique position affords me the ability to engage in research that might make a difference for other autistics who also struggle with substance misuse.

I am not grateful for the level of difficulty I have had to simply survive in life. What I am grateful for is that my experiences can be used to help others.