Science and Tech Helped Diagnose Me With Autism, After Years of Speculation
Misdiagnosed for years with ADHD, a college student found peace thanks to special radioactive tracers and computer imaging.
As a Gen-Zer, or “digital native,” my entire life has been influenced by technology. My parents pounded out essays on typewriters in high school while I was touch-typing on computers before sixth grade. All this technology provided support in some areas, but it also helped me conceal my struggles. Even with the world at my fingertips, I couldn’t find the words to express my greatest need. It’s surprising to think that my crutch would become my sword and shield and reveal my true self.
Autism Misdiagnosed as ADHD Happens Frequently
Before I get ahead of myself, let me tell you my secret struggle. I have high-functioning autism, but I was previously misdiagnosed with ADHD (Attention Deficit Hyperactivity Disorder). My situation is all-too-common. Women with autism spectrum disorder (ASD), known as Aspienwomen, mask their symptoms at higher rates than males to meet their gender’s societal demands. We are trained to look for what’s “normal” and to do what’s expected at an early age. It’s especially common to misdiagnose women as having ADHD, anxiety or depression, since many of the symptoms overlap with ASD.
It took 22 years, a move to Alabama, and Single Photon Emission Computed Tomography (SPECT) brain imaging to communicate what I could not. What exactly is SPECT brain imaging? I was injected with a nuclear tracer that my brain absorbed in proportion to blood flow. A gamma camera circled my skull while mapping cerebral blood flow. Computers stitched these scans together to form a 3-D image of what parts of my brain were functioning and where there were literally holes in my mind. Two days of lying on a table while gamma rays pierced my skull finally allowed my mind to communicate directly to the world. Why did it take radioactive tracers and computer imaging to speak for me?
Growing up, it wasn't okay to have mental disorders, but I discovered some were worse than others. It was one thing to be ADHD, but heaven forbid I was atypical, much less full-on autistic. I honestly thought it was better to pretend everything was normal than to try to get a proper diagnosis. I was so terrified of being labeled ASD, I didn’t know where to turn. I couldn’t understand that it was okay for there to be something wrong with me and to seek help. My fear of the isolation ASD often brings even triggered my severe depression and anxiety.
Being on the Spectrum in High School Was Not an Option
I realized that I might be on the spectrum in high school. After my youngest siblings’ autism diagnoses, my mother proclaimed, “I figured out what’s wrong with you!” On the one hand, they were far enough on the spectrum that it dominated their life. However, they were lucky in a way; they knew they were different and the diagnoses came early. I was just confused.
I began to accept who I was while watching Atypical in college. I could see myself struggling with the same issues that Sam, a teenager with ASD, faced in the show. It wasn’t just the big stuff, like being obsessed over penguins or his speech patterns, as much as a collection of a thousand little things—like when the sights, smells, sounds and feels of the world became too much for him. I’ve been there before, even without knowing where there was.
Unlike Sam’s experience, my family didn’t know how to be supportive. My parents’ divorce alienated me from both of them. I know they loved me and tried to protect me in their own special ways, but sometimes you have to be dying before someone can hear you. My mother tried to help me by screaming away the autism and my father thought I needed space to grow. Neither understood that I thought I was battling my mind alone. I entered college escaping from my childhood, alienated from my parents and very much alone in this world.
In College, I Worked Around the Problem Instead of Confronting It
Trying to find a way to cope with the world on my own meant being anything but ASD. Transfixed by my dreams of being a doctor I tried to hide my issues with antidepressants and stimulants. When the medications weren’t enough, I turned to my university's Disability Resource Center (DRC), but even they couldn’t help me without a proper diagnosis. I could tutor peers who would get As, while I struggle to obtain Bs due to misinterpreting questions on exams and not fully grasping what was being asked of me. Simple school tasks, like emailing teachers, were overwhelming. Small talk for me is like dipping your toes into a pool before hopping in, but I only know how to dive in or stay dry. My college life was essentially academic and social torture.
On the surface, it seemed like I had found a way to get by; I formed a routine. I taught sunrise yoga to a group of students which allowed me to control the interactions. Between classes, I could see my favorite teaching assistants to ask questions. After class, I studied in the quiet of the library with a peer group. I knew their faces, but we hardly spoke. At night, I would return home to my small, off-campus efficiency with my two cats. But behind my facade, I was just trying to fake it until I made it. I knew damn well my life was a hot dumpster fire, but it wasn’t until the coronavirus that I realized it could be worse.
Quarantine Meant No Coping Mechanisms
The pandemic took away all the safeguards that kept my flaming shithole of a college experience from being a raging forest fire. My rituals and routines crumbled under the weight of quarantine. I had high hopes that I could excel in a virtual classroom. However, reality came and kicked me in the crotch. Listening to hastily produced online material felt worse than nails on a chalkboard. I lost all my organic resources, like office hours and study groups, and was forced to face my old nemesis of emails and phone calls in earnest due to social distancing. By summer quarter, I realized that something needed to change. My best worst option was to return to my father’s and stepmother’s house. Under the best of circumstances, it’s hard to move back in with your parents. I didn’t have high hopes or any other alternative.
After a frantic week of deconstructing my life, I faced the challenge of flying cross-country during a pandemic. I’ve always been called a germaphobe, and my thoughts tend to fixate. I could imagine the germ cloud spreading from every cough. I could see the handprints of strangers lingering on every surface long after each stray touch. I was just about out of my mind by the time I reached Alabama.
My agitation continued at my parents’ house. It’s like I have spidey-senses, but no volume dial. My speakers are always set at eleven. The sounds of everything in a room, from the hum of a fridge to the jabber of conversations, compete with all my other senses. Ultimately, my environment blends into a sensory smoothie too repulsive to swallow but forced down my throat. Sometimes when the world is so overwhelming, confusing and cruel, I don’t know how to say there’s something wrong nicely.
A Comment From My Stepmother Changed Everything
I wanted my parents to take care of me and provide structure to help me power through my remaining classes. Because let’s face it, sometimes we all want to hide under a blanket. Instead, after a brutal summer of fighting and failing, I had an unexpected breakthrough when, just like my mother, my step-mom believed she understood my unintentional “crank-a-saurus-bitchiness” about stimuli, like coffee grinders in the morning or wetsuits that never fit right. While the exclamation might seem rude, I guarantee that if you lived with me, you’d be there, too. Hell, even I ask myself “What’s fucking wrong with me?” when I am breaking down over simple things becoming too much.
“There’s so much with you that someone who’s neurotypical can just suck up and get the hell over,” she told me. “But you don’t and can’t. So it means either you are a massive drama queen or you have autism.”
It’s not only my environmental conundrums in which I struggle to find the words. I misunderstand the implications of questions, and people misconstrue my intentions. While I theoretically understand people thanks to majoring in neuroscience and psychology, I always seem to fall short. Often, I’m called a sociopath, despite my greatest dream to work in a life-saving career field. I don’t specifically know how I come off, but I know it’s not right and I am often dubbed “bitchy.” This inability to see eye-to-eye with others has decimated nearly all areas of my life, and worse yet, I’ve become too terrified to continue to try.
From my perspective, it feels like no one understands me, and that no matter what I do, I’ll always be alone in my thoughts. Talking to people is like trying to scream at someone who is on land, while I am sinking to the depths of the water. I can see them and hear them, but nothing I do is ever right. Everything I say just turns to bubbles. I hoped and prayed that technology could speak for me and bridge that gap with humanity.
Getting Diagnosed With Autism as an Adult Was a Relief
All of this brings me back to getting the correct diagnosis. My doctors did more than image my brain. There were extensive interviews and questionnaires—but it was the colorized map of my mind, with glaring holes that ultimately told my story. For the first time in maybe forever, my parents could hear (well, see) me, and we could plan a path forward together.
It was abundantly clear that my senior year would have to wait. In addition to showing that I wasn’t ADHD, my brain scans also revealed that I actually just have Meares-Irlen Syndrome. I never needed powerful (and addictive) stimulants to keep words from dancing on the page when I read. Instead of drugs, I’m able to stop the shifting of words with simple colored lenses, or a film over my books and computer screen. I weaned off the Vyvanse drugs and replaced them with an improved diet and nutrition.
As for the depression, the feelings of isolation, frustration and failure are still very real, but I no longer feel like my world’s on fire. I’m taking a winter off of school to ski bum and heal from scholastic trauma. Come spring, I hope to have enough brain reserve to kick butt in school, rather than have my ass handed to me. Hopefully, by next fall, I can be a research assistant at my university’s labs. This wasn’t the summer I was hoping for, but it was the one I needed. And, for the first time in a long while, I don’t feel completely alone in this world.
For as long as I could remember, I used technology to learn how neuro-typical people communicate, but that wasn’t my voice. It took being bombarded with gamma rays to show myself to the world, and the people who are closest to me. In a perfect world, I will find the support I need. At least now they know why I am a “crank-a-saurus-bitch” sometimes.