I’m no stranger to lies and conditional acceptance. As a child, my mother insisted my brown skin was white like hers. When I asked her why I saw a brown face in the mirror, she spun stunning tales of a Cherokee grandfather and a mysterious group of forebears called the Black Irish.
Thirty some years later, when I finally gazed upon the brown face of my African-American father, I felt liberated. Vindicated.
I watch my history repeat itself as I interact with adult autistics. After I blogged about When Modern Medicine Made Me More Autistic, I gingerly shared the link to my story with my local Autistic Self-Advocacy Network (ASAN) chapter. I feared rejection and judgment, because my story flies in the face of popular autistic assertions that autism is an exclusively congenital state that exists and persists independently of harm caused by pharmaceuticals or environmental agents.
The rejection and judgment I feared didn’t materialize from my local chapter, but I took some heat from a few autistics around the world. With this post, I’m going to liberate myself from fear of rejection and conditional acceptance and make my position clear.
The notion of historical neurodiversity hurts autistics.
The figures in history whose behaviors allegedly corresponded to what may now loosely be within the bounds of an autism diagnosis—men like Henry Cavendish, Isaac Newton, and Charles Darwin, don’t much resemble the autistics we see today.
These historical figures were reported to be introverted and solitary—their intellects logical and brilliant. They don’t look a bit like today’s “level 2 and 3” autistics who sit glued to screens, earbuds planted firmly in ears because the slightest noise will trigger a meltdown.
Was there a cadre of autistic lesser characters who didn’t make it into the history books? A quiet contingent of autistics who sat rocking in living rooms and classrooms with the same frequency as young autistics today? Any honest person over age forty will answer that question with a resounding no. Any school teacher who has been teaching for over twenty years will say absolutely not.
I’m only 41-years-old, but I can assure you I was the only child with blatantly autistic behaviors at any of the five densely populated urban and suburban high schools I attended. My behavior was so far outside of the norm that staff had no idea what to make of me. They’d never seen a child who acted like me before. I’d become so overwhelmed by my surroundings that I’d opt to sit in hallways rather than enter my assigned classrooms. I’d likewise refuse to enter the cavernous and intimidating cafeterias. In the 80s and 90s, I was the only child like that out of hundreds of children.
At home, I’d sit and throw light bulbs and glassware against the wall of my bedroom. I’d lapse into a meltdown at the least disruption to my environment. At the home of my only friend, I’d hide away upstairs, face buried in a book, because the play of other children downstairs overwhelmed me.
As the years passed, I learned to mask and manage these behaviors, but my act was short-lived. In 2014, when I was in my late thirties, I experienced a series of pharmaceutically induced brain changes. After several adverse reactions to a host of drugs, all of the hallmarks of my autistic behaviors were exacerbated. My sensitivity to sound reached a level of intensity I could never have imagined possible. A disconnect formed between my mental conceptualization of words and my brain and my mouth’s abilities to create speech. Words I wanted to say were replaced by involuntary and repetitive vocalizations.
Meep! Bay! Yes, then now! Yes, then now! Yes, then now! Yep, yep, yep! Say, then now! Meep!
Words and phrases fell from my lips unbidden and uncontrolled. I still spout nonsense at times of sensory overload, exhaustion, or after eating foods I don’t tolerate well. I never made such sounds before 2014.
After my pharmaceutically induced injury, my avoidance of people transformed from a preference to a mandate, and my challenges with eye contact regressed to level I hadn’t experienced since elementary school. Suddenly I had an impulse to bang my head against the wall, another regression to behaviors I had as a young child.
So, do I believe that adverse reactions to pharmaceutical agents can cause or exacerbate symptoms of the condition we currently call autism? I absolutely do. I’ve lived through it. My exacerbated autism was not a naturally neurodiverse state. It was brain damage. I did not consent to it, and while I now accept it, I would never have chosen it.
Prior to my injury, I lived in a place I’ll call the autistic sweet spot, where the strengths granted me by my condition, such as my hyper rational thought processes, overshadowed my primarily social liabilities. After my injury the balance shifted, and my autism became anything but sweet.
My damaged state resembles the types of autism we’re seeing more of today. After my neuropsychiatric injury, I became more anxious and panicky. My lifelong sensitivities—to sound, motion, and light—transformed from manageable to debilitating.
The conditions that made my neuropsychiatric injury possible are genetic mutations that prevented my body from metabolizing several medications, changes to my gut microbes, and an immune condition called Mast Cell Activation syndrome.
If autistics want to bury their heads in the sands of denialism about the etiology of the types of autism that are skyrocketing today, it’s at their own peril. Today, young Aspergerian autistics who personify life in the autistic sweet spot dominate conversations about autism. They celebrate their neurological differences, which they seem to believe exist as entities distinct from the other medical conditions they often live with.
I wonder what these young people will look like at my age—after short lifetimes of gulping down toxic drugs for ADHD, mental illnesses, gastrointestinal disturbances, hormonal imbalances, and sleep disorders they somehow believe have no relationship to their distinct neurological status.
And that says nothing of the autistics who are already like me. The nonverbal, intermittently verbal, or involuntarily vocalizing autistics. Autistics with bodies full of debilitating co-morbidities. Our perspectives have already been pushed to the margins by prominent and successful autistics who romanticize autism, blissfully ignorant of the challenges faced by those of us who are more profoundly disabled.
The autistics who dominate the conversation don’t talk about bladder dysfunction and incontinence. They don’t talk about irritable bowel syndrome and accidents. They can leave their homes without 32 decibel noise reduction rating ear protection. They can live independently, without fear of becoming lost in their own neighborhoods on days when they face profound confusion.
Some rest their high minds behind blog posts that deny the experiences of those who have lived through or watched loved ones live through chemically induced neuropsychiatric injuries. Others sit happily in their parents’ basements, punching controls on PlayStations. They cheer their lack of maturity as a mark of distinction, but avoid discussing what might happen to them when their parents pass away, or the stress their parents might endure when considering that question.
I reject being told that black is white, and that my lived experience is something other than what I see in the mirror. Our modern, toxic environment is hurting those of us with autoimmune mediated autism, and it’s creating a variety of autism we’ve never seen before.
Autistics should be marching in the streets demanding justice and compensation for our injuries, but instead, we’re creating and defending a myth of historical neurodiversity. What a coup for pharmaceutical companies and Monsanto that those who have been most harmed by their wares reject the notion that we’re damaged.
Light always shines through lies, and myths always crumble and shatter. I’ve broken the trauma bond that once led me to buy into lies to gain conditional acceptance.
Today’s autism is not yesterday’s autism.
I believe I was born autistic, and autism as I originally experienced it was sweet. I don’t want to be neurotypical, but I want to live life without a crushing disability. I’m no longer in that autistic sweet spot. I’m injured, and I won’t rest until the truth about pharmaceutically induced neuropsychiatric injuries is told.