Hey, friends! As noted previously, I realized this last year that I’m on the autism spectrum. This has revealed a lot of unexpected but important truths about the various mental and physical illnesses that I’ve developed throughout my lifetime. I think it’s important that other people understand those truths too. Thus, I’m sharing today the story of how the heavy stigma around autism led to me entering a downward spiral of burnout where my disabilities multiplied and my quality of life plummeted.
Please note that my disability story as presented below contains discussion of ableism, anxiety, obsessive-compulsive disorder, religious trauma, dissociation, extreme chronic pain, self-harm, and suicidal thoughts.
Episode I: Bee Phobia
I don’t remember ever not knowing I was weird.
When I was little, my Grandma Thurgood expressed concern because I didn’t fit in with my cousins. My first ballet teacher said I was “the only three-year-old she knew who PMSed.” My mom struggled with the screaming meltdowns I would have over loud noises, doctor visits, and hair brushes. Adults constantly called me “moody,” “sensitive,” “bossy,” and “high-strung.” (The term “high-strung” makes me wince to this day.) People were confused by the way I moved, the way I thought, the way I felt.
But I was also known for being “precocious” and “talkative.” I’ve always been driven to devour all the knowledge I possibly can, especially about other people. As a child, The Little Mermaid was my favorite story in the world–how could I not connect to an idealistic, musical young woman who longed more than anything to be a part of the messy human world? That’s what I wanted too. It’s always seemed like people understood each other more easily than they did me, and I was determined to get through somehow. Already, too, it was so noisy inside of me, and I needed a way to move some of the noise into the outside world so I could better process and cope.
As long as the adults in my life were impressed with my intelligence, I could ignore their other confused comments–and I cared more about their opinions than about the opinions of my own peers, who mostly avoided (and sometimes bullied) me. So in my early childhood, I wasn’t bothered by my own weirdness.
The one concession I made was to stop talking so much because the adults found it annoying. When I learned to read and write, I thankfully found new ways to learn and communicate. Everything changed in one night in kindergarten when I was at home paging through a copy of Clifford’s ABCs, and the words just clicked in my brain. The next day, when I demonstrated to my teachers my skills, they were stunned. I, of course, was quite proud of myself. But my handwriting was so atrocious that one of my teachers had me type my spelling tests on the classroom computer, trusting me not to use spell-check. (My rule-following nature wouldn’t have allowed me to cheat anyway.)
At the end of third grade, my family moved from Albuquerque to a much smaller New Mexican town. My feelings about this were tumultuous. I had no friends to miss in Albuquerque, and in the new town, I almost immediately found a small group of misfit girls I actually got along with. Those friendships have made such a difference in my life.
However, moving is an overwhelming experience full of change, one made worse by the fact that I had previously attended a experimental mixed-grade, part-homeschool classroom and now had to adjust to regular public school. So when I went camping for the first time that summer and was forced to contend with spider-infested outhouses and a swarm of stinging bees (who did not sting me, but did hurt the people around me), something inside me just snapped.
I developed such a hysterical fear of bees that Mom had to drive me home from camp early. For months afterwards, my life was defined by that terror. I could think of almost nothing but bees, day and night, and I came up with a set of well-researched rules to avoid them. I couldn’t always escape the outdoors, though, so I had repeated panic attacks while both kids and adults looked on. At one point, in the middle of outdoor PE, I saw a bee on the grass nearby. I ran screaming and crying for my classroom, and my favorite teacher opened the door. A powerful wave of relief washed over me–someone was saving me, finally!–but then I saw the expression on her face. I felt like a terrified, overwhelmed little girl who had no idea what was happening to me, but my teacher was looking at me like I was a monster.
No one seemed to know what to do about my phobia; no one even told me the word for what I was experiencing. The school principal and the school counselor treated me like some kind of troublesome puzzle. But I was abruptly broken out of the nightmarish haze that had taken over my life when a bee flew past and grazed me with its stinger–an accidental exposure to my worst fear that revealed how minor bee stings actually were. That moment gave me the clarity to start regaining control of myself.
I was deeply shaken. I spent most of fifth grade worn down and uncertain, trying to make sense of what had just happened to me. I developed chronic headaches eased only by ice cream binges, and I began experiencing extreme chest pain when running that my doctor couldn’t explain.
Up until now, I’d thought that other kids didn’t like me because I was smart, physically inept, and a Mormon. Now I was confronted by a much darker reality, one where my own abnormal mind could create horrors worse than anything I’d experienced in the real world. I devoted myself more than ever to writing stories as I tried to untangle the pain inside me, and my fascination with humans solidified as I struggled to understand the differences between myself and other people. Thanks to a school counselor, I soon realized that I was hyperempathetic, prone to being overwhelmed by outside emotions, though I thought of it as a mind-reading superpower set off by bee-related trauma.
Around this time, we realized that my youngest brother was having speech difficulties and hyperfixations on things like pipes and drains. Because I already had three cousins diagnosed with autism, our attention turned to related conditions. My doctor and my mom thought that both my brother and I had sensory processing disorder (SPD), which is now often considered part of the autism spectrum. For a while, I was thrilled to have that explanation for my experiences! But the tentative diagnosis didn’t come with much support, and I was desperate to avoid another phobic episode. Slowly, I connected the way the adults discussed SPD and the ways I’d been treated my entire life–and that was when I started feeling truly, deeply broken.
Episode II: Obsessive-Compulsive Disorder
As the shame sank in, I decided to reject my SPD. I set out on a quest to “act more normal,” which is also known as “autism masking.” The concept of “normalcy” would go on to define my life for over a decade. I started by forcing myself to wear more uncomfortable clothes and by teaching myself to walk the way other people did, instead of on my toes. I had already shown signs of fearful obsessive-compulsive behavior, mostly focused on the idea of sexual assault. Now, I developed full-fledged OCD that revolved around three particular points: three different kinds of OCD.
First, I began to believe that if I was morally “good enough,” God would reward me by “fixing” my SID. This falls into the category of religious or moral OCD. Second, I came to believe that being “good enough” included a grand romantic destiny where I would save a guy and thus “earn” my normalcy. This falls into the category of relationship OCD. Third, I started thinking that if I could look perfect enough on the outside, it would provide other people some compensation for having to deal with the rest of me. This became body dysmorphic disorder, a crossover mental illness somewhere between a body image disorder and an obsessive-compulsive disorder.
Seventh grade was the beginning of middle school for me, and the sudden exposure to teenager pop culture felt like hitting a brick wall. Before this, I’d only ever listened to Enya and classical music, I had almost no Internet access, and I also almost never watched TV or movies. To compound how overwhelming it was, my brother’s behavior was becoming more unusual and concerning, with increasingly violent meltdowns. All our family’s attention turned to his journey along a diagnostic track from SPD to ADHD to PDD-NOS to autism. As for me, I was busy running in the opposite direction from my oddities.
During seventh grade, I also developed strong feelings for a boy who seemed like my opposite: a brash, sports-loving bully hated by most our grade. (I hated him too, at first.) I grew to love him for many reasons, but in retrospect, I think I especially connected with him because he was neurodivergent himself, probably undiagnosed ADHD. Though he had some maladaptive behaviors, he seemed to like me a lot. He made me feel like it might be okay for me to be me. I needed that so badly. Unfortunately, though, our existence in very different social circles meant we faced an uphill battle to convince anyone else to support our relationship.
Because of that, my mission to become more “normal” increased tenfold. I now had a reason to care about what my peers thought for the first time. Trying to make myself likeable to as many of them as possible, while still living up to adult expectations, was a guaranteed failure that I couldn’t stop myself from trying anyway. I dove into pop culture. I became more intent on improving my outward looks. I studied the way my most-liked peers acted so I could follow suit, and I made list after list in my diaries: friends and acquaintances and goals and flaws and plans and songs.
When eighth grade arrived, I broke under the pressure. I now had a new class schedule that isolated me from my closest friends and from the boy I loved. I was desperate to hold onto the romance my OCD told me was sure to be my salvation, but my emotions had become so strong I couldn’t even speak when the boy was around. My self-hatred skyrocketed.
My spiral down into a hellscape of suicidal thoughts hit its peak in midwinter, when I was reminded of the fact that Mormons aren’t supposed to date before they turn sixteen. To me, there was no grey zone in what was “right.” With my relationship OCD and my religious OCD now turned against each other, I lost all control of my thoughts. On the one side, I couldn’t stop thinking about how badly I needed to be with the boy I loved so he would save me from myself. On the other side, I couldn’t stop thinking about all the rules I needed to follow to be good enough for my peers and my family and my church–for God Himself, who was also supposed to save me from myself. The internal argument was violent and nonstop. I described it to my best friend as “God and the devil fighting inside my head”–and I was balancing on the very edge of choosing to take my own life just to escape the battle zone. I’m not sure any words can fully describe my anguish.
My best friend was the only one I told about my suicidal thoughts because I trusted her the most not to judge me for them. I hated that I was so broken over a boy who multiple people said liked me. I’m glad I did tell her, though, because her support was a key part of turning me back from the edge. As winter turned to spring and a teacher also helped me in a more minor way, I did finally stop having suicidal thoughts.
I had made it through the worst OCD episode I would ever have.
In the aftermath, though, I was more burnt out than ever. I spent ninth grade exhausted and isolated, sleeping in classes for the first time, too impatient to interact with most people. I retreated into hyperfixations on Harry Potter and on my own novels. To add injury to insult, as if periods aren’t already enough of a sensory nightmare, I started having excruciating menstrual cramps that had me on the floor screaming and vomiting. The OCD also continued to wear on me in a less dramatic way with its self-hating perfectionism. By now, I had achieved such complete denial about my “shameful” SPD diagnosis that I no longer remembered how I had begun feeling so broken inside–all I knew was that something was deeply wrong with me, something I had to hide.
Episode III: Fibromyalgia
In tenth grade, I started coming back to life again. This was complicated, however, by the arrival of the 2009 H1N1 pandemic. On Halloween that year, I woke up with serious achiness all over, especially in my hips. I knew I had caught the swine flu, but in my ongoing quest to “act more normal,” I decided to attend my friend’s Halloween party anyway, “like a normal, irresponsible teenager.” I ended up having to go home early with a high fever and a severe cough.
H1N1 knocked me down for about a month, with me developing bronchitis and then strep throat. Though I did recover, the burning hip pain never went away. As spring approached, it actually began to worsen. My doctor performed a series of tests trying to figure out what was happening. The truth wouldn’t come to light, however, until eleventh grade.
The first week of school is another difficult transition, and this particular first week included a series of extra stressors that would be upsetting even for non-autistic people. I was already in a precarious position: just recovered from autistic burnout and still dealing with post-viral symptoms. It’s no surprise, then, that I dipped right back into the burnout zone again. The hip pain steadily spread across my body that week until I hurt everywhere, all the time, in so many different ways. I became exhausted and confused, and my sensory sensitivities, especially to the cold, increased.
It took only a couple of months for my doctor to diagnose me as having fibromyalgia, a chronic pain and fatigue disorder with uncertain origins and no cure. I laughed when I was diagnosed because I was so relieved to have an answer, but I also cried from terror and heartbreak. For the first time, I had no choice but to confront my own limitations. I could not be normal, and I never would be. My grief over lost possibilities was made more difficult because I didn’t know how to let myself grieve. I had spent my entire life having my powerful emotions and my sensory sensitivities invalidated by other people, and I had become an expert at invalidating them myself. I was used to pushing through and doing whatever it took to meet expectations. I mirrored people’s physical and emotional energy constantly because humans usually find that likeable, which made even me confused about what I felt sometimes. (The hyperempathy didn’t help.)
People had become used to seeing me quietly duck out of class in tears at least once a week. They’d never paid it much mind–I guess because I was still getting straight As and not causing actual disruptions. However, the fibromyalgia diagnosis seemed to garner me a little more support. So while this grieving period after I was diagnosed with fibromyalgia was difficult, there were people around me giving me permission this time to feel my sorrow and fear and loss. That made a difference.
Episode IV: Chronic Illness Crisis
Twelfth grade saw me in a better place than I’d been in for a long time, not in the least because I had started low-dose antidepressants for my fibromyalgia, which also caused a slight improvement in my body dysmorphic disorder. I had spent years now seeing a distorted, acne-riddled face in the mirror that wasn’t real to anyone but me. At times, I had become so desperate to destroy the flaws that I would take a needle to my skin. The antidepressants allowed me to start breaking through the delusion caused by my body image disorder for the first time.
Yet the same desperation that had been pushing me since fourth grade still drove me onward. I was trying to be someone I wasn’t, living a life that wasn’t mine. At home, multiple autistic people were struggling to survive without external support, leading to all sorts of turmoil. The pressure kept growing for me to be the functional one, to support my family emotionally, and to not cause trouble.
As I started college at Adams State University, I was faced with another set of challenges trying to make friends in a new place. Halfway through my freshman year, minor chaos at school and home caused some of my unaddressed mental issues to surge forward. A friend I was fortunate to have found there convinced me to start seeing one of the free counselors, and with her help, I realized I needed to be somewhere else. I transferred to BYU – Idaho, where I hoped I’d fit better.
In some ways, I did. At the beginning of 2014, thanks to a therapist at their counseling center, I was finally diagnosed with OCD. I was so relieved to have an explanation for why I felt broken, and I devoted myself to treating my anxiety. Little by little, with counseling and an increased antidepressant dose, I found my way into the light. I began seeing my self-worth in a way I wasn’t sure I ever had before, and as I stabilized emotionally, I realized how much unnecessary self-hatred I’d been living with.
Though having my OCD controlled was truly transformative, all was still not well. I continued to struggle with building an adult life. My roommates often disliked or even hated me for being “weird,” “boring,” and “antisocial.” The ways I was used to living made no sense to them. They refused to accommodate my fibromyalgia, let alone my undiagnosed conditions, and so I pushed myself straight through my own limits trying to fit in again. I soon became too exhausted to attend anything except classes. Meanwhile, I experienced the worst moment of ableism I’ve ever been through, thanks to one professor. The mayhem when I was at home also just built and built and built.
Even as my body screamed more loudly every day for me to stop and listen, I became more skilled at ignoring its warnings. I started having brief episodes of bladder pain that I wrote off as being weird menstrual cramps. My generalized pain and fatigue grew. Little by little, I was driving myself straight into my worst autistic burnout yet.
But it took me a long time to accept that something was wrong. I’m an idealist dreamer by nature, and I don’t like being limited. I was being crushed under the weight of everyone’s expectations. I’d spent my whole life ignoring my feelings to make others happy. I’d never learned how to actually recognize and care for my own needs. So I kept pushing through, as it became harder to stay focused on even my greatest passions. I kept pushing through, as my mental confusion grew and I started skipping chores and assignments and words and memories. I kept pushing through, as my pain grew to a level of extremity that sometimes kept me from walking and required nightly heating pad use. I kept pushing through, as my fatigue became so severe I spent every second I was awake thinking about when I could next sleep.
I pushed through a gallbladder infection and a subsequent allergic reaction to an antibiotic. I pushed through a hospitalization for an infected cat bite and a temporary bowel obstruction. I pushed through multiple bladder episodes that doctors kept misdiagnosing. I had no one to stop me and everyone to urge me on. When I finally recognized that there was something wrong, it was the one semester where I had a friend there who saw I was suffering. She was autistic too, and unlike all my other roommates, she understood. With her support, I quit orchestra so I could finish my degree. I finally crawled across the finish line in mid-2016 with my B.A. in English.
And then my body gave out. I had intended to earn a Master’s in Library and Information Science online next, but I was so profoundly exhausted that I was sleeping 16+ hours a day. My thoughts were so muddled it was like swimming through Jello trying to get to them. I started having full-body tremors and spasms, and I turned to a cane for support as my balance failed. I couldn’t even stand without my vision going white and my chest feeling like an implosion. My bladder pain also escalated into a nightmare unlike anything I could have imagined.
The bladder symptoms, at least, were soon diagnosed as interstitial cystitis (IC) by an excellent urologist. Even with extensive treatment, though, I had developed so much inflammation that I had crisis moments of excruciating pain throughout 2016 and 2017. The trauma erased most of my long-term memories and caused repeated dissociation, but I am still haunted by the experience of my own body torturing me. If I had known how long it would last, I would not have been able to survive it. I still feel its threat like the distant footsteps of some awful monster, so dark and enormous and powerful that if it decided to turn its full attention on me again I would instantly shatter.
Yet I was used to pain, so much so that I often failed to realize how awful my suffering was until it eased. What made me suicidal this time, more than the physical agony, was the fact that I could accomplish almost nothing in my day-to-day life. I slept. I watched Netflix. I went to medical appointments. I cried. After years of trying to escape it, I no longer had any way to disguise the fact that I was broken.
I felt more unworthy of continued existence than ever. I felt like my life was a cost-benefit sheet that now added up to a burden for my family. I couldn’t see any way for my greatest, eternal desire for learning and growth to be fulfilled anymore with me in this state. At least if I died, I would be moving somewhere. The first time I had considered suicide, I had imagined something painless and quiet, but this time, I wanted to punish my body for what it was doing to me. I wanted to tear it apart.
Thankfully, I had a counselor at home whom I trusted with my honest thoughts. He taught me to see my value beyond what I could contribute and to set much-needed personal boundaries. My family finally found a better way of being, where we no longer sought normalcy and traditional success, as our various disabilities and human limits became unavoidable. (We were much helped by a fantastic group of autism professionals who started working with my youngest brother.) I found solace in a broad group of disabled and story-loving people online, with social media being a much more accessible way for me to connect with others. I held onto a few little joys that kept me alive.
Eventually, I started to see hope again. My bladder pain began to improve. My antidepressant was switched, at which point we discovered it had been contributing to my mental confusion. I realized that I had continued to grow as a person, even while living in bed without obvious markers of achievement. In the summer of 2017, I went to the Minnesota Mayo Clinic, where I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS). I also attended a special fibromyalgia/CFS clinic, which focused on the idea that sufferers need to find and stay just within our limits. That point was underscored by the fact that I had stopped having tremors and balance problems as soon as I didn’t have my exercise bike with me to use. (Why had I still been using it up until now? Don’t ask me! I am the queen of pushing myself too hard.)
I set to work finding my actual limits and taking better care of my body. As months and then years passed, my symptoms improved. Many treatments worked together to make that possible–Cymbalta, gabapentin, Heparin bladder instillations, medical compression socks, etc.–but solitude and rest were the most radically important. I began emerging from the wreckage of what came before, and I tried to figure out who I could be now. I accepted that I was not going to get a Master’s degree after all, and I obtained some part-time online work as an academic editor. I entered a new, improved phase of my writing career.
When the COVID-19 pandemic hit in 2020, it presented quite a challenge. I was finally well enough to start coming out of isolation, and I was finally feeling the need to–the need to connect with others more so I could work with them towards a future where I could actually thrive. The pandemic also triggered two major traumas I had not yet processed: the trauma of the extreme bladder pain I had experienced, which contributed to a hatred of my own illness-vulnerable body, and the ongoing trauma of my lack of a supportive community as a young disabled person. My fear and frustration transferred into a binge-eating disorder that peaked in late 2021.
While trying to understand my trauma-disrupted memories , I set to work reviewing my old diaries, which now spanned over 7,000 pages. (I know; it’s wild.) Through that, I regained a more cohesive sense of self, and my perspective on many things shifted. After a lifetime of struggle and recent education from disabled voices online, I looked back and saw the unifying thread of my existence: the thread of neurodivergence.
My isolation had allowed me to start unmasking my true self. I now avoided sensory stimuli that increased my pain while seeking stimulation in other sensory areas, including through rocking, humming, and eating. I was having hyperfocus episodes multiple times a week without the structure of school, and I was no longer exhausting and contorting and suppressing myself trying to manage other people’s reactions to me. My strong “special interest” in human beings supported mutual conversations, but I began to see the oddities in my lack of small talk and my extremely expressive openness.
I thus came to accept a truth I had been running from for most of my life: I don’t just have autistic family members. This entire time, I have been an autistic person struggling under the weight of a heavy societal stigma that forced me to betray my own body.
I’m not meant to be normal. I never was.
And the fault isn’t in me for having an unusual brain. The fault is in our society for demonizing those who are different and only providing support to those whom it deems acceptable. I am incredibly privileged to have been finally given the time, resources, and support I needed to heal–and I will never stop fighting for everyone else to be given that too. So many autistic people are driven to suicide. That could have been me. For all I know, it could be me in the future.
I don’t know exactly how to be in the world as myself. I’ve spent so long trying to follow a path that was wrong for me. But the realization that I’m autistic is sure to be a turning point in my life. I doubt the damage done my body will ever be healed. But my chronic illnesses don’t have to be the worst they’ve ever been, and I don’t have to develop any more new ones, either. I can put the work in now to figure out how to avoid burning out again.
I’m currently working with a few professionals who believe in my self-diagnosis and who are trying to help me obtain a formal diagnosis. (Editor’s Note: As of April 7, 2022, at the age of 28, I have been given the official autism spectrum disorder diagnosis!) The self-recognition, though, is the most important step for me. You can’t fight for acceptance and support if you don’t know you deserve them.
If any of this seems familiar to you, whether you’re trying to hide a weird brain or another weird way of being, I want you to know that you do deserve a good life. You deserve to be yourself. Different things are right for different people, and you shouldn’t have to burn yourself to ashes to please people who can’t see that. When you’re ready, a community is here to accept all the beauty of your weirdness. 💜
If you aren‘t someone who knows that pain, you can still be someone who joins in to lift the burden of the sky from the backs that it crushes most. Learn about the experiences of marginalized people of all kinds. Listen when we tell you about the paths that are right for us, even when you don’t understand them. Support us when we’re breaking, and support us so that we never have to be shattered in the first place.
If you want to support autistic people, I recommend autistic-led organizations like the Autistic Self-Advocacy Network and the Autistic Women and Nonbinary Network. There are also many other autistic voices on social media, including people who don’t speak aloud and therefore are heard less, that deserve to be listened to. Another blog post explaining the basics of the autism spectrum can be found here. Thank you for hearing us.