Autism Stigma and the Magical Multiplying Disabilities

As noted previously, I realized last year that I’m on the autism spectrum! This self-diagnosis has shifted my perspective on my entire life so far, but especially on the various mental and physical illnesses that I’ve developed. Today, I’m sharing the story of how the heavy stigma around autism led to me working so hard to escape it that I entered a downward spiral of autistic burnout, causing my disabilities to multiply and my quality of life to plummet.

Before I get into it, I recommend you read last month’s post on autism basics you might not know. I covers some background information there that is important for understanding my experience.

(This post contains discussion of ableism, traumatic mental and physical illness, and suicidal ideation.)

Disability pride flag (black with blue, yellow, white, red, and green zigzags) with a golden infinity symbol in the right-top corner

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 walked, 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. Part of why I was so talkative, I think, is because of that. It’s always seemed like people understand each other more easily than they do 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 sudden 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, something inside me just snapped.

Me as a fourth grader with round glasses and red and white clothing
Welcome to the struggle bus, Fall 2003

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. I felt a powerful wave of relief–someone was saving me, finally!–but then I saw the expression on her face. She wasn’t looking at me like I was a terrified, overwhelmed little girl who had no idea what was happening to me. She 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.

But 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 other people’s emotions, though at the time I thought of it as a mind-reading superpower set off by my bee-related trauma.

Around this time, we realized that my youngest brother was having speech difficulties and strange hyperfixations on things like pipes and drains. Because I already had three cousins diagnosed with autism, our attention turned to related neurodivergences. My doctor and my mom thought that both my brother and I had sensory integration dysfunction (SID), 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 SID 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 SID diagnosis. I set out on a quest to “act more normal,” which is known in the psychology world 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 sex, which I had been introduced to when I turned eight. Now, I developed full-fledged OCD that revolved around three particular points.

First, I began to believe that if I was morally “good enough,” God would reward me by “fixing” my SID. This fits 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 fits into the category of romantic OCD. Third, I started thinking that if I could look perfect enough on the outside, it would at least start to make up for the rest of me. This became full-fledged body dysmorphic disorder (BDD), 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 running straight into a brick wall. Even as I became more and more overwhelmed, I became more and more entrenched in my fight for perfection. I studied my peers closely, teaching myself what they did that allowed them to be liked. This often conflicted with the moral and academic expectations of adults, which I was also determined to meet. My feeling of shame grew every time I failed to present the unbroken façade other people wanted from me.

Meanwhile, my brother’s behavior grew more unusual and concerning, with increasingly violent meltdowns. All our family’s attention turned to his journey along a diagnostic track from SID to ADHD to autism spectrum disorder. My atypical symptoms fell the wayside. I was busy bolting headfirst away from them anyway.

Me as a seventh grade, with round glasses, choppy and overly short bangs, and a teal shirt
I apologize for puberty, Fall 2006

In eighth grade, I broke under the pressure again. The devastating combination of culture shock and heavy autism masking collided with a new class schedule that isolated me from my friends and from the boy I had come to love during seventh grade. Buried fears about being friendless again came to the surface. I was desperate to hold onto the boy my OCD told me was sure to be my salvation, but my emotions for him had become so strong I couldn’t even speak when he was around. My perfectionism and my self-hatred both skyrocketed.

This was made worse by the fact that most people around me hated the guy in question, as he was well-known for being a brash, chaotic bully. They found it shocking that I was so devoted to someone who seemed like my total opposite. (In retrospect, I think I connected well with him because he was neurodivergent himself, likely undiagnosed ADHD. Despite the asshole front he put up, he made me feel like it might be okay for me to be me. I needed that so badly. I needed his example of bravery and brokenness, messy and vibrant as it was.)

Unable to fix my situation, I spiraled down into a pit of suicidal thoughts. This hit its peak in midwinter, when I was reminded of the fact that Mormons aren’t supposed to date before they turn sixteen. With my relationship OCD and my religious OCD now turned against each other, I lost all control of my mind. On the one side, I couldn’t stop thinking about how badly I needed to be good enough for the boy I loved so he would save me from myself. On the other side, I couldn’t stop thinking about all the rules and expectations I needed to meet to be accepted by my peers and my family and my church–by 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 something I knew shouldn’t be so serious. 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, to the point of screaming and vomiting. Still, the OCD continued to quietly wear on me with its perfectionism. By now, I had achieved such complete denial about my “shameful” SID 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, out of my deep burnout. This was complicated, however, by the arrival of the 2009 H1N1 pandemic. On Halloween that year, I woke up with serious muscle aches all over, especially in my hips. I knew I had caught the flu, but in my ongoing quest to “act more normal,” I decided to irresponsibly attend my friend’s Halloween party anyway. 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 eventually recovered, the 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.

Me as a tenth grader, no glasses or bangs, in a blue shirt and jeans
Add some pain to trauma, Fall 2009

The first week of school is another difficult time of transition, and this particular first week included a series of extra stressors that would be disruptive and upsetting for most non-autistic people. I was already in a precarious position as someone 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 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 devastation soon followed. 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 overly powerful emotions and my unusual 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 energy constantly to make them happy, making even me confused about my intentions. (There were many dismaying incidents of accidental flirting.)

However, with my OCD continually beating on me, people had become used to seeing me quietly duck out of classrooms 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 disruptions in class. With the fibromyalgia diagnosis, teachers seemed to now recognize my emotions as being worth support. So while this grieving period after I was diagnosed with fibromyalgia was difficult for me, 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 BDD. 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. (I have a permanent scar on the side of my nose because of that.) 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 was growing on me to be the functional one, to take care of my brothers, and to not cause trouble.

As I started college at Adams State University, I was faced with another wave of ableism trying to make friends in a new place. Halfway through my freshman year, minor chaos at school and home caused some of my unaddressed fears to rise. A friend I was fortunate to have found there convinced me to start seeing one of the free counselors, and with their 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, and as I stabilized emotionally, I realized how much unnecessary self-hatred and fear I’d been living with.

Adult me leaning forward in a black leather jacket, smiling, standing in a dorm room
Brighter days with OCD treatment, Spring 2014

As transformative as it was for me to have the OCD under control–and it truly was transformative–all was still not well. I continued to struggle with building a social life. The people I saw the most, 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 even attend social events. Meanwhile, I experienced the worst moment of ableism I’ve ever been through, thanks to one professor. The mayhem and stress back at home also just built and built and built.

Even as my body screamed louder 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 cramps. I had more and more pain and fatigue. Little by little, I was driving myself straight into the worst autistic burnout I had experienced yet.

But it took me a long, 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 sleep.

I pushed through a serious 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. She took good care of me. With her support, I quit orchestra so I could finish my degree. I finally crawled across the finish line 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 14+ hours a day, my thoughts 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 became unable to do much anything beside sleeping, watching TV, and reading books.

My bladder pain also escalated into being so excruciating I wanted to die just to escape it. I was quickly diagnosed with interstitial cystitis (IC) by an excellent urologist. We started various treatments, including weekly catheter instillations of medicine into my bladder, but my level of inflammation was so severe that I continued having crisis moments of pain throughout 2016 and 2017. Due to the trauma of that unbearable agony, I lost most of my long-term memories, and I began having episodes of depersonalization and derealization.

As all my internalized ableism crashed in on me, I became suicidal again. I was suffering physically in a way that would break most people, I had lost almost everything that made me happy, and now, I had witnessed my deepest fears come true: falling off the “normal” life path, not meeting people’s expectations, and becoming little else but my own brokenness. I felt more alone, unheard, and unwanted than ever.

A bittersweet moment of suffering, Fall 2016

Thankfully, I had a counselor I trusted to guide me, and he taught me to see my worth beyond what I could contribute and to set much-needed personal boundaries. My family finally found a better way of being as we accepted the reality of all our limits. (We were also much helped by a great set of supportive autism professionals who started working with my youngest brother–so many people take community support for granted because the world was built for them, but those who are different know how needed and how limited it is!) I also found solace in a broad group of disabled and story-loving people online, with social media being a much easier and less overwhelming way for me to connect with others. I held onto a few little joys (and quite a few medical treatments) that kept me alive.

Eventually, I started to see hope again. My bladder pain began slowly to improve. My antidepressant was switched, at which point we discovered it had been seriously contributing to my mental confusion. In the summer of 2017, I went to the Minnesota Mayo Clinic, where I was diagnosed with fatigue-inducing postural orthostatic tachycardia syndrome (POTS). I also attended a special fibromyalgia clinic, which had some questionable science at parts, but which made the important point of how 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 while I was away from home and no longer engaging in the exercise routine I had stubbornly kept doing this entire time.

So I set to work finding my actual limits and taking better care of my body. Little by little, as the months passed, my symptoms improved. Many treatments worked together to make that possible, but probably the most important was solitude and rest. I finally came back to myself. I started figuring out how to build a new life from the wreckage of what came before. 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.

Aftermath: Autism

When the COVID-19 pandemic hit in 2020, it presented quite a challenge. I was well enough now to start coming out of isolation. Not only that, but 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 necessary restrictions thus caused me a lot of frustration. The pandemic also triggered two major traumas I had not yet fully processed: the trauma of the extreme bladder pain I had been through, which caused a lot of fear and hatred of my own illness-vulnerable body, and the trauma of a lifetime without the support I needed, which caused growing panic as I realized I still didn’t have the necessary in-person support system to survive emergencies or build a successful future. These emotions transferred into a binge-eating disorder that worsened the longer the pandemic continued.

While trying to understand my unresolved trauma, I set to work reviewing my mostly forgotten past through the very detailed words of my old diaries. Through that, I regained a more cohesive sense of self, and my perspective on many things shifted. After a lifetime of struggle and years of learning from disabled people 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 back and forth and binge-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 interest in human beings still supported decent conversations, but I began to see the oddities in my lack of small talk and my genuine, expressive openness, which often made people uncomfortable.

Welcome to the weird brain club, Spring 2021

One night in the summer of 2021, the dots finally connected as I accepted 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 pushed me to my breaking point over and over again.

I’m not meant to be normal. I never was.

And the fault isn’t in me for having a weird 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, which significantly decreases our average lifespan. That could have been me. I won’t deny that it still 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 I’ll ever fully recover from the damage that was done. I will have all these chronic illnesses now for the rest of my life. But they 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 strongly in my self-diagnosis and who are trying to help me obtain a formal diagnosis. (Editor’s Note: As of April 7, 2022, I have been given the official autism spectrum disorder diagnosis!) The self-recognition, though, has been the most important step for me. Societal support is and always has been limited for the autistic community. That’s why so many of us are so fierce about fighting for ourselves and each other. But we can’t know to fight for our rights if we don’t know we 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 those rights. You deserve a good life. You deserve to be yourself. Different things are right for different people, and you shouldn’t have to hurt yourself to please people who can’t see that.

When you’re ready, a community is here to accept all the beauty of your weirdness. 💜

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