Autistic Adults Are Not Okay

By Victoria Lin Tanner

This book is a scream from a person who can't take any more. It began as a self-indulgent cry into cyberspace, and evolved into a personal volume that also attempts to educate and deconstruct the often-oversimplified media image of autism. The contents are raw and unfiltered, written at my absolute lowest point at which I, like thousands of other autistic adults, had been thinking of doing the unthinkable. Autistic adults are struggling, and nobody seems to be listening. Almost all of the resources out there are for autistic children – but autism is a lifelong disability. What does this mean on an individual level? We struggle. Severely. I am just one autistic adult whose struggles have become too burdensome to manage. There are over five million autistic adults in the U.S. alone, and even more living undiagnosed. Many of us who came to the diagnosis late in life are grieving the lives we could've had if we'd known sooner, and if we'd had help for our challenges.

The complete lack of meaningful support is causing miserable, angry, and broken autistic adults. This book exposes the ways that our society blocks autistic peoples' access to basic life fulfillment. Organizations like Autism Speaks do nothing to concretely improve the quality of life for autistic people. More than anything, they spread misinformation and stigma. At this book's conclusion, I offer a solution that would tangibly help autistic people more than any ABA therapy, gluten-free diet, supplement or vocational rehab program. From one utterly exhausted autistic person comes the question, and the answer to 'WHY IS THERE NO HELP FOR US?'

• Language: English
• Publisher: Victoria Lin Tanner
• Release date: Oct 15, 2023
• ISBN: 9798223467663

Book preview

Contents

Foreword

Chapter 1: Who Am I?

Chapter 2: Discovery

Chapter 3: The Journey

Chapter 4: Life Before Clarity

Chapter 5: We Are Everywhere

Chapter 7: Autism is a Color Wheel

Chapter 6: Invisible Struggles

chapter 8: 'Work Hard And You Will Succeed' Is A Lie When You're Autistic

Chaper 9: The Solution

Epilogue

About The Author

Foreword

My reason for writing this book is that I can’t take any more. I can’t live with the overwhelming mental pain of being autistic in a world that mocks and dismisses my struggles. My life is incredibly lonely, frustrating, embarassing, and unfulfilling. From what I’ve heard from other autistic adults, this is far from a unique experience. Yet, you never hear about us. All the focus is on autistic children and their parents. All the help is for them. I have a theory about the lack of discussion around autistic adults. People don’t want to believe their children will still be autistic when they grow up. Seeing autistic adults struggling is a constant reminder that autism doesn’t ever go away. They need to believe that the special diets, the counseling, and ABA therapy will cure them someday; and in order to believe that, they have to shove autistic adults away and pretend we don’t exist.

But I’m here. You can’t wish away my existence, even if I do. I want society to look at me and know that its lack of acknowledgement causes miserable, broken, and confused autistic adults. In this short volume, I will be uncomfortably honest. I will try to check my anger from spilling out onto the page and obscuring my message. The content may not be well-organized, since what I have to say doesn’t fit into neat categories. All of my struggles flow into every area of my life, making compartmentalization nearly impossible. Some of what you read may sound self-indulgent, or 'poor pity me.' I’m beyond caring. I’ve pushed down my suffering until I finally burst at the seams. I did this to make other people comfortable, because my turmoil was too much for them. In doing so, I made myself unbearingly uncomfortable for over 30 years. I cannot do it anymore. I will commit suicide if I am forced to do that another day.

This book is a scream from a person at their wit’s end. My hope is that it will also be an agent of change.

Chapter 1: Who Am I?

'Who am I?' For self-preservation, I won’t answer that question in detail. My name and exact identity are unimportant. What is important for you to know is that I am a woman of color in her 30’s, living in the United States. I’ve disclosed this because I need to tear down the prevailing belief that autism only affects children and young white males. I am not what the majority imagines when they hear the word 'autistic.' This matters because people like me often don’t get the diagnosis of autism simply because we don’t 'look autistic.' We don’t tick the checkboxes which are derived from Rain Man stereotypes. I was blown away by how mental health professionals can assess a struggling person who suspects they are autistic, and say something like:

'You managed to make it through school with decent grades and no accommodations. You even had some friends, and I can see you are able to make eye contact. Your ‘symptoms’ are more consistent with PTSD. I definitely don’t think you’re autistic because you are too self-aware. And even if you are autistic, a diagnosis won’t help you at this point in your life.'

Let’s get something straight: I made it through school by heavily masking my autistic traits, even as I did not know  that's what I was doing. I came out bullied and traumatized. The few friends I did have started to break away when they noticed my eccentricities peek through the mask I worked so hard to maintain. I make eye contact because my grade school teachers and even some college instructors would demand I look them in the eye when they spoke to me. So I did, even though it made me feel like crying. But I did not turn out okay. I faked my way through life, making myself smaller and smaller, so as not to offend anybody with my strange self. It left me with nothing but burnout and a whole lot of rage.

  It’s entirely unacceptable that trained professionals would abide by dated stereotypes, believing that their limited understanding of autism should be regarded higher than autistic peoples’ actual experiences. One 2-hour assessment (if you manage to get that far), and they think they know you better than you know yourself, having lived with your brain and nervous system your entire life. Nevermind that you may or may not have been masking throughout the assessment out of habit, or that you failed to demonstrate the full range of your struggles over a short window of observation, or that the anxiety building up to this moment temporarily blocked you from expressing what you needed to express, in just a way that would make you seem 'autistic enough.' Nevermind that some of us have parents who, wishing to sabotage the diagnostic process, agree  to be interviewed only to claim ignorance that our issues were apparent from early childhood. Yes, it is in fact possible for autistic people to make eye contact, to have friends, to speak intelligently, to be academically successful–and to fail horribly once out of the structured environment of a school. Professionals should know that just by understanding that any diagnostic criteria is not a one-size-fits-all.

I hid my struggles from the world because I wanted to stop being bullied. I wanted to get by without setting off alarm bells that there was something wrong with me. I smiled. I feigned interest in things. I suppressed my anxiety, my tics, my urges to make noise in public. I pretended to be excited and happy about life, speaking brightly about plans for the future. I watched other girls and copied their voices, turns of phrase, and mannerisms. Before I learned the word 'autistic masking,' I used to say that I was 'putting on my fake face for the world.' I did this in every situation–with teachers, friends, adults, and complete strangers. It was extremely important that the world not know that I was an alien pretending to be a person. Masking all day, then going home to the privacy of my own home felt like tearing off a suffocating bodysuit and letting everything hang loose. At home, I shut out the world with T.V. and video games. Unfortunately, I let out my frustration on my family. I did not know what was wrong with me, but I wanted to punish the world for not seeing me. My energy drained, I had nothing left to think about what I really wanted out of life, nor who I was behind the mask. I was incredibly smart, and showed great promise. As a child, my playroom was filled with educational toys and books about how things work. My parents wanted me to do something really amazing with my life. I went to one of the most difficult private schools in the country and made straight A’s. I even had a full-ride scholarship to college. Everyone told me I had a bright and successful future ahead of me. Do you want to know what I am now?

A burnout. A loser. A complete failure in the eyes of society.

It’s impossible for me now, at thirty-something, to retroactively get all the support I needed growing up. Having the diagnosis now might help me get accommodations at jobs. It won’t get me hired, though. I don’t need the external validation anyway. If nothing else, it would’ve been life-changing if someone had sat me down at a young age and said, 'Hey, your brain is wired differently. You’re developmentally disabled, which is why you’ve had trouble staying on track for your age. You also have the co-morbid conditions of Borderline Personality Disorder, Chronic Fatigue, OCD, ADHD, Anxiety and Depression, but don't let them fool you into thinking that's all.' As I’ve learned, they give those latter diagnoses much more freely to adult women than the autism diagnosis, and most of us find out about those (if present) long before the autism. Many are also misdiagnosed with personality disorders insteadof autism. Working backwards, following the little breadcrumbs of social failures and botched opportunities to finally have that lightbulb moment, is a real trip. The question most of us face is 'Where do I go from here?'

I still have no idea.

Chapter 2: Discovery

We will get into my backstory before long, but let’s begin with the light-bulb moment in which I first had an inkling that I may be autistic. I think it will be easier to work my way back from there, because that is the way I’ve been processing and re-framing my entire life since that moment. I was in my final semester of college, and had just been dumped by my fifth roommate. Among other things, she took issue with my binge eating and limited conversation skills. With support from our RA, she proposed a trade: I’d move in with the girl across the hall so my roommate could move her new friend into our dorm room. By this point, I was pretty used to 'the roommate dance.' People wanted their roommates to be their best buddies, and I just wanted to be absorbed inside the portal of my computer screen--working, gaming, watching videos, and generally pretending my roommate didn’t exist. At least the way I figured, she'd be the last college roommate I'd ever have to deal with.

So, as I sat in my new room in front of my computer, ignoring my new roommate, I was scrolling through Facebook when I came across an emotional post from my friend, Michael. Though Michael and I had never met in person, I perceived that we were strikingly similar. We shared some very specific fixations, including musical theater and music from  an obscure children’s animated series. Unlike me, Michael participated in a live theater club. He had the lead role in their own production of The Phantom of the Opera. I was a little jealous of him because my shyness and anxiety made it impossible for me to ever set foot on stage. Michael was also extremely moody, and could be childish. He often aired his off-stage drama on Facebook, to the consternation of his friends. One day, Michael dropped a rant about how this thing called 'Ass Burgers' ruined his life, that he couldn’t take anymore, and hinted that he wanted to kill himself. Baffled and a little bit concerned, I hit up Google with the search term, 'Ass Burgers,' which automatically corrected to Asperger’s Syndrome. I recall vaguely hearing that term before. I read those diagnostic bullet points and heard the cannons go off in my head: boom, boom, boom, boom. I was reading about myself.

I sat there in a fog for a minute, seeing my entire life flash before me with startling clarity. Twenty two strange, lonely years. A lifetime of wondering what was wrong. Why I seemed leagues behind my peers, why nobody ever stayed in my life for very long, why I felt like I had fabricated an entire persona to get the world off my back. All these lonely, involuntary charades leading me to the present moment, in which I was dissociating in my chair, in a strange new room with a girl whose former roommate was now sleeping in my old bunk. According to these criteria, if I indeed had Asperger’s, that meant that I was autistic.  I’m a bit ashamed to say that it was resistance to the autism label that led me to shove the possibility away and continue as though I’d never heard of Asperger’s for several more years. But the seed was planted. From that moment on, when things went awry despite my best efforts, I would instantly be transported back to that dorm room where  I sat stunned in front of my laptop, reading about my entire life.

I would probably have stayed even longer in denial, but my life after college was like falling down the stairs. My parents signed divorce papers the day after my graduation, following a very long and ugly battle during which my father had threatened suicide, and my brother and I were forced to side against him. I had no income and was still dependent, so I had to move across the country with my mom, who wanted to live closer to her family on the west coast. The meltdowns resulting from the deluge of changes drew negative attention from my extended family. They confronted me and advised my mom to kick me out unless I agreed to see a psychologist. I absolutely could not stomach the idea of having to talk to an outsider about what felt to me like intensely private issues; but their badgering became so relentless that I agreed just to make it stop. During those sessions, I did nothing but cry. My words disappeared. I felt stigmatized, helpless, and strangely ashamed. My family treated the therapist as a godsend who was there to 'fix' their broken adult child. I was humiliated in a way that I didn't know how to describe.

The burden of being a broken adult followed me everywhere. Life became so brutally unhappy that I began to live entirely inside my own head. Out in the world, I couldn’t find a crumb of success. Alone in my room, my computer became a portal to exciting and abstract possibilities. My brain latched onto moonshot fantasies, like discovering the secret to reverse aging and time travel. I am, as I’ve learned, a fantasy-prone person. I became obsessed with the occult, and ways to manifest things into my life by summoning spiritual entities. I consumed, avidly, articles about radionics, DNA activation,  biokinesis, 'Matrix Energetics,' servitor creation, and quantum jumping. If I’d wasted the best years of my life, I was determined to somehow make up for lost time by attaining the unattainable. I was up at 3 am reading about The (fictitious) Philadelphia Experiment and the mythical secret inventions of great minds like Nikola Tesla. I became convinced that the U.S. government was hiding technology that was capable of teleportation, and I was determined to get to the bottom of it. The more astronomically worthless I felt, the grander the delusions. Feeling high on possibilities, I’d research the names and contacts of self-proclaimed fringe professionals, hoping to track down somebody who could