Understanding Autism and Its Mental Health Challenges

When I was in elementary school, I read A Real Boy, a book by a mother whose child received an autism diagnosis. It changed the way I thought about autism forever. The family of three—the mother, a journalist; the father, an attorney; and their son—go on a journey, seeking first a diagnosis and then therapies. The book not only follows the family’s journey but also traces the mother’s learning about her son’s disability. The chapter that affected me most explained the wiring in the brain that can lead to autism so simply. Wiring that would normally focus on social interactions might instead focus on pattern recognition, or have too many connections in an area, leading to sensory issues. I did not know then that I was autistic, only that I felt an affinity for the family’s journey. Once I got my diagnosis at the age of twenty-three, I started telling myself that when I was having sensory issues, I was safe and that my brain had some wiring telling me I was not. I would even put my hand on my chest and tell myself, “I’m safe, brain, I’ve got this.” Along with my autism diagnosis, I also have various anxiety disorders. I have tools that help reduce the alarms and their intensity. I have not always had the right set of tools. The time when I did not have the right set of tools was the most difficult time in college.

I attended college in person during a time that, in retrospect, feels like another lifetime. The four years I spent in a rural southern Georgia town feel very disjointed from the rest of my life. College is often highlighted by partying with copious amounts of alcohol and sometimes drugs, but I was still on seizure medication after being diagnosed with epilepsy in high school. I didn’t say the scary part out loud, but during my second seizure, I lost control of my bladder and woke to having wet myself. I also woke up in a different room than I remembered being in before the seizure. From the stories I had heard about black-out drinking, it sounded similar. I had lost control of my body once, and I never wanted to risk doing it again. Addiction ran on one side of my family, and I was terrified I’d end up with an addiction to a substance that would swallow me whole. So, throughout my four years at college, I barely kept my mental health together, and something inside of me knew that adding a substance, even a legal one, would not lead to a pleasant outcome. Regarding my mental illness and crises post-college, and recently, I’ve done some research regarding the challenges that adults with level one autism can face when it comes to accompanying mental illness and substance abuse. I want to be careful to state that every person with autism has their own story and experiences. Each study has its own limitations and a distinct set of research subjects. I only wish to share what I think my personal experience might shed light on, based on what I’ve been reading recently. I’ve recently been dealing with a resurgence of suppressed memories that have been very painful, and the level of anxiety accompanying these memories was something I hadn’t ever felt. When it comes to my normal levels of anxiety, my coping skills work well, and I have a good handle on what I need to do. For a month and a half, I wanted the memories to go away and for the alarms to fade to silence. In college, I had scoffed at those who had participated in underage drinking and consumed harder substances. I didn’t understand the appeal.

While I didn’t use any substances and I was able to ride out my recent bumpy mental health episode with healthy coping mechanisms, I have never had more compassion for those who use substances to numb painful memories. I had nights during the month and a half that these memories were popping up, that I was crying, unable to sleep, and wanting to turn everything off because I wanted to rest. I would wake up the next day feeling like I hadn’t slept at all, or at least not rested well, and I would see bags under my eyes as I got ready to go to work. I wondered if the wiring of my brain was against me and if I needed to take something to take the edge off just for a little bit. I wanted to know if I was the only person with level one autism who was exhausted by masking at work, the intensity of my emotions, and what those with a similar diagnosis to mine, if they didn’t have coping mechanisms, would use. I wanted to know that the pull toward maladaptive coping mechanisms didn’t mean I was broken.

Three studies of interest to me include the Swedish Registry Study, The Lancet Psychiatry Study, and The JAMA Pediatric Cohort Study. I’m aware that a key part of the risk involves ADHD and that it can put an individual at increased risk, but the effort of a person with level one autism masking and the intensity of emotions that someone with autism feels cannot be understated. While someone with autism might be less likely to engage in substance abuse, if they do and if the substance works for them, it is likely to become something they will rely on. I also think it’s important for society to be aware that those with autism are at an increased risk of developing eating disorders. In a world that is not kind to those who are different, it should not be surprising that leaning into maladaptive coping mechanisms is something that an individual with autism, especially at level one, would be at an increased risk for doing. It can often feel like I’m at war with my brain and body. I use meditation, exercise, sleep, and writing to stay grounded and find a path forward, but it can feel very difficult at times.  

The biggest hurdle I face with my disability is that my challenges take place between my ears and are often not visible to others. When I share with others that I spend a lot of time after an intense social interaction in my apartment with my cats recovering or that I have a noise involved in a normal cleaning task that causes me physical pain, I’m often met with derision. If I had a wheelchair, used a cane, or even had a cochlear implant, I have a suspicion that my disability would be taken more seriously. The desire to appear as non-disabled as possible and my internal desire to validate my disability as real are often at war with each other. For months recently, I thought about applying for a service dog as my social anxiety has gotten worse over the years. I kept telling myself, “I’m not disabled enough, I’m not in a wheelchair.” I finally had one too many meltdowns due to social events and experienced too much social anxiety. I also had a realization that there is no award given at the end of life for appearing as neurotypical as possible.

It’s not a done deal, but I’ve started the multi-part application process for a nonprofit that I think will be a good fit. I don’t know if they think that they will be a good fit for me. The big first step I took for myself was giving myself permission to fill out the application and see what would happen.