All things considered, I’ve managed to do pretty well and find some humble success as an unapologetic video game nerd. I’ve had the chance to work along side some extremely smart and talented people, I’ve hung out with a few celebrities, and I’ve been lucky enough to design and develop for some of the biggest digital properties on the planet (such as Call of Duty, Tomb Raider, and a few more). I’ve restored old arcade machines in my youth, managed secure corporate networks as an IT admin, built websites for a number of clients, advised investment firms as a technology industry consultant, I’ve been happily married for almost eighteen years, I have loyal caring friends with whom I have strong relationships, and now that I am into my forties I can look back on all of it and reconcile with the fact that I did it all… while being autistic.
Autism is a pretty big deal to me, but I think it should be a pretty big deal to everyone. It’s prevalence and social impact is growing day by day. More people are being diagnosed with ASD than ever before – many of them adults who either never met the criteria for diagnosis as a child, or who never found a practitioner skilled or educated enough to provide the tools and insight they needed. It affects roughly two percent of all children (in 2018, the CDC increased its estimates for children diagnosed with ASD as a ratio of 1/59). That number is expected to grow for a VERY long time – and I want to tell you about my experiences as an autistic person to give everyone a solid context for what Autism is really like, without putting it in a box. Chances are extremely high that you already know someone with Autism – probably with a host of symptoms that are completely different than my own because Autism can’t simply be put in a box.
What is Autism, and why should you care?
To start, try to think of something only you know that nobody else knows. It can be a secret you’ve never told, or an epiphany, or a quiet observation about something personal (or social, professional, or anything else to which you might have a unique insight). Maybe it’s an apprehension, or a phobia, or a desire that you keep close to the chest. It might even be an assumption or hypothesis about a particular modus operandi, or about nature, or social psychology – through one way or another you are able to understand the interconnected influences of vectors in a way that give you insight no one else can see, no matter how hard you painstakingly try to point them out.
Now imagine this “secret” is something you can’t explain to anyone. Language fails at every level at capturing or describing in any accurate or proper detail what you intrinsically know. No charts, or diagrams, or movies, or books, or songs, or any other media comes close to clearly communicating this information – and despite exhausting every known avenue to explain it, no one will truly grasp what is in your head – like the way a sound makes you feel something physical, see something that is invisible to everyone else, or taste on an otherwise empty tongue. A smell that triggers agonizing pain, blindness, panic, or perhaps retreat into the back of your mind to disconnect with the world around you.
If you are even remotely familiar with this hopeless feeling – a sense of despair that something critical and essential inside you will never be understood by your peers, friends, or family – then I have news for you: you might just understand (at least a little bit) what it is like to be autistic. However, also take this with a grain of salt. I’m in no way trying to insinuate that autistic people (and yes, a large contingent of autistics abhor person-first language in regard to their diagnosis in the same way you wouldn’t refer to someone who is gay as “person with gayness”) are in some way quiet magical geniuses, beautiful unicorns, or in the same breath claim to be “normal.” Autistic people experience the world in very different ways outside of the normal calibrated collective human experience, and it’s only until recently that modern science and medicine have begun to see below the tip of the iceberg to better understand ASD’s (Autism Spectrum Disorder) symptoms and origins. Every autistic person – like EVERY person – is different and there are several reasons for why that is, but it’s also partly why Autism is so misunderstood.
I was diagnosed late in life. As a child, an Autism diagnosis was reserved for children who exhibited the most extreme symptoms, and who would require specialized care for the rest of their lives. My only symptoms beyond excessive tantrums were a clear delay in being able to walk and speak – which led my parents to the decision to enroll me into school a year later than most children (I fielded questions from other students my entire life about why I was a year older than my peers and that I didn’t flunk a grade). School was such an extremely stressful place that it eventually caused me to develop stomach ulcers at the ripe old age of TEN. I remember morning after morning waking up with terrible dread and stomach pains from the anxiety of social interactions that I was endlessly bombarded with. None of the adults took me seriously – in their eyes I was a constant trouble-maker just looking for as many reasons as I could to play hooky.
It wasn’t for lack of trying that I couldn’t convince my mother or my teachers or my school counselors or my many doctors and therapists – it was for lack of vocabulary. My particular blend of symptoms includes sensitivity to light and sound, chemical sensitivity, executive dysfunction (a state in which I am unable to think critically or make decisions), insomnia, dyslexia, echolalia (a condition that sometimes causes me to involuntarily repeat words and noises), selective mutism (an inability to communicate needs while under duress), several anxiety disorders, major depressive disorder, and a host of chronic GI (gastrointestinal) and cardiovascular problems resulting directly from unmannaged mental and emotional stress. Imagine being a teenager trying to figure out this convoluted tangle of symptoms, unaware of how they affect you or how they compound each other because mental health education is non-existent in virtually every school – it’s no wonder my search for answers to uncover the source of all of these symptoms was long, agonizing, and disturbingly silent. I didn’t have the vocabulary to convey it. I couldn’t grasp the context of my experience. I didn’t know why everyone seemed to just “function” when I struggled, and when I FINALLY got my diagnosis… well, there is nothing more affirming than finding real answers about what makes you “you.”
So, what is Autism really?
There have been countless videos online of autistic people in the throws of meltdown -unable to communicate or advocate for themselves – and while the response to this media over time has become more empathetic in tone, it isn’t anywhere near as complete a picture of what autism is or what it’s like living as an autistic day-to-day (not saying that empathy isn’t appreciated either, of course). Not every autistic person has meltdowns. Not every autistic person is a speechless savant, or mentally impaired, bound to some sort of assistive device, or incapable of taking care of themselves and advocating for their needs. There is a large number of people who may not even realize they’re autistic because their symptoms are so mild that their experience falls within the normal calibration of the human experience and they never question some of their idiosyncrasies (and even then, I wouldn’t begin to insinuate that their lives would be any worse/better if they had a legitimate diagnosis or not). Again, there aren’t enough fingers in the world to put on all the points of what Autism is and the myriad ways it affects the autistic population.
Autism is a collective of neurological and psychological symptoms resulting from abnormalities in brain development during gestation and early childhood. While the root causes of Autism are still widely unknown, growing evidence shows a strong correlation to air pollution and several possible genetic components. It affects sensory processing, executive function, communication, social skills, mental illnesses like depression, anxiety, obsessive compulsive disorder – all of which have secondary and tertiary links to other maladies like ulcers, IBS, and other conditions relating to severe emotional stress. It’s often recognizable by common traits such as difficulty making eye contact with other individuals, ataxia, “stimming” (a repetitive behavior that manifests as physical movements or vocalisations in response to emotional stimuli), hyperactivity and/or inability to remain still, echolalia, and difficulty communicating. It is also entirely possible that an autistic person may not meet any of these criteria, or become so adept at masking (actively and cognitively trying to suppress their autistic behaviors and reactions so as not to appear deficient or out of control) that they pass as neurotypical.
It should be noted that masking is an extremely stressful and fatiguing mental undertaking that heavily strains an individual’s ability to remain cognitively present and focused – often the most common root of anxiety and executive dysfunction among individuals on the spectrum.
There are also physical indicators in the brains of autistic patients. Some evidence suggests that a prominent manifestation of over-crowded synapses may be partially to blame for excessive amounts of neurological signal overload and interference. In 2014 the University of Columbia studied the brains of children and young adults who had died from unrelated causes and found that the number of synapses in autistic brains were significantly higher than found in the control group (you can read more about these findings here: https://www.cuimc.columbia.edu/news/children-autism-have-extra-synapses-brain). During early brain development, there is a burst of synapse growth that is naturally and gradually “pruned” by about half after adolescence – but the synapses in autistic brains show a very minimal amount of pruning and overcrowded dendrites in the cortex (the part of the brain closely associated with most Autism disorders). Experimental drug treatments of rapamycin to artificially cull excessive synapses showed limited success in relieving some autistic symptoms, but without a more precise targeted approach these treatments can cause more harm than good and even exacerbate symptoms in patients.
Why is Autism becoming a big deal?
I’m quickly dipping into the latter-half of the average human’s life expectancy, which has given me decades to reflect on what being autistic means for me. For the majority of my life I knew that I experienced the world in a very different way from those around me – being overwhelmed by noise until I can’t see, unable to prioritize or filter out the minutia of all my senses firing all at once, hyper-aware of changes in air pressure and light/shadow, the variable shifting of gravity under my feet and spacial awareness in crowds, struggling with executive dysfunction while trying to compensate for information overload (internal senses + environmental vectors + social interaction + cognitive focus) – things I never seemed recognize as congruent behaviors or anomalies shared by my peers. But in my old(ish) age, this long and often painful experience has helped me to reconcile why I felt the need to mask, and how to advocate for myself and others. It has taught me how patience and empathy are one and the same, and how true understanding comes from both. I’ve had a very long time to research my condition, to contemplate how and why I’m different, and discover who I am as a member of humanity.
Now, I’ve got my own opinions about Autism’s origins based on intertwining historical records, environmental science, genetic research, modern neuroscience, and clinical psychology (including the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition – or “DSM-5” – and other peer-reviewed publications). Suffice to say if you’re not a fan of Teenage Mutant Ninja Turtles or Toxic Avengers, you won’t like where this is going, but I’m writing this to put pieces together in a way that’s easier to see the whole picture, and (for myself at least) give a more grounded reasoning for what Autism is and how it came to be. Some of my hypothesis are unpopular because of how some may personally feel, but my opinions are based purely on hard empirical scientific evidence. The Autistic community at large has radicalization problem, and like any such movement that places anecdotal personal experience over consistent scientific data I am keen to fight an information war with actual information. So, if you’re ready for the rabbit hole…
- I believe that as early as the 1800’s, industrial waste and pollution have played a pivotal role in forever altering the evolution of the human race – resulting in atypical brain and nervous system development, and effectively creating new genetic lineages from germ-line damage to human DNA – which would explain both the pollution and genetic components believed to be central to the development and diagnosis of ASD. I am very much aware of how “fantastic” that sounds, but bare with me – there’s a fair amount of corroborating evidence.
- There have been numerous studies focused on Autism risk factors that consistently show pollution (specifically lead, ozone, carbon monoxide, sulfur dioxide, and other particulates including carcinogenic compounds and various nitrogen oxides). One of the most recent studies from Monash University in China (which you can read more about here: https://www.sciencedaily.com/releases/2018/11/181105105414.htm) showed over a nine-year period that “exposure to fine particles (PM2.5) from vehicle exhausts, industrial emissions and other sources of outdoor pollution increased the risk of developing autism spectrum disorder (ASD) by up to 78%.” This has been more or less consistent with previous studies in the U.S., Canada, and Europe where previous studies have shown a strong correlation between air pollution (specifically nitrogen oxide) and births with subsequent ASD diagnosis, adding to the growing concern that there my not be a “safe level of exposure.” The majority of pollutants come from vehicle exhaust industrial waste.
- Autism began to become a more prevalent phenomenon shortly (~50-100 years) after the developing world began embracing industrial manufacturing and consumption of leaded/toxic fuels. While we don’t have more precise scientific environmental records, it wasn’t until the late 1960’s that the United States began to come around to the conclusion that leaded fuels were a significant public health issue and required automotive manufactures and the fossil fuel industries to develop unleaded methanol, as incidents of lead poisoning and brain damage (especially in young children) grew at an increasing rate. In 1970, the U.S. passed the Clean Air Act that – in conjunction with other environmental initiatives – have helped to reduce atmospheric lead levels by 80% as recorded in samples of arctic sea ice. However, lead levels in the atmosphere today are still sixty-times higher than they were several centuries ago (you can read more about lead levels in arctic sea ice here: https://www.sciencedaily.com/releases/2019/07/190708154038.htm).
- If you’re already familiar with the history of Autism research that predates World War II, don’t worry – I’m not going to bore you with those details, and instead establish this as part of a timeline parallel to what we know from the history of environmental science and autistic study/discovery. While this merely serves as a data point, during this time in history the industrial revolution had hit its peak and chemical waste from manufacturing was almost entirely unregulated. Given the research available now, it’s fairly easy to draw parallels between the exponential increase in poor air quality and Autism diagnoses.
- We are bombarded by carcinogenic compounds in the air, in our food, and all of our surroundings every hour of every day – these compounds shred and destroy DNA, which includes germ-line genetic information critical in reproduction – it is entirely possible that you may never develop cancer from these chemicals and still carry irreparably damaged genetic material that can be passed on to your offspring. Thus, our species may be looking at an eventual genetic restructuring with direct ties to carcinogenic interference.
- Because of the DSM-5 and expanded criteria for the diagnosis of Autism, more undiagnosed adults than previously thought to exist are beginning to be counted. This has led to the misconception that the criteria for diagnosis may be too broad, but when compared to environmental records for pollution and accounting for age of each patient the correlation becomes clearer. Anecdotally, I was diagnosed at age 38 – being born in California in the late 1970’s (just several years after the passing of the Clean Air Act in the U.S.) and being the child of smoking parents makes my diagnosis seem all too probable.
I get it, no one likes the insinuation that their diagnosis is the result of being deformed, deficient, or “damaged,” or simply a mistake resulting from corporate environmental carelessness, but that’s not the story here – Autism is (unofficially, but literally) a different breed of human. Some have savant-level skill and ability, some are extremely adept at pattern recognition, some are radically intellectually gifted. Some also suffer severe trauma, extreme anxiety, depression, or all of the above and more. But if this says anything about Autism in general, it’s that autistic people are just as human as neurotypicals. But, we are the extremes; the edge cases, the outliers of a greater whole – and THAT is what makes us special.
And if you think all of that is a lot to take in…
Looking at this information holistically should give us pause about how we approach topics of increasingly critical importance like climate change and the impact that pollution has on humanity beyond the obvious increases in ocean temperatures and intensifying extreme weather. As stated earlier, there may be no “safe level” of pollution that doesn’t impart a significant risk to future generations with regard to preserving the integrity of our genetic legacy or protecting our evolutionary future. These are extremely difficult questions that are well beyond any one person’s pay grade, and what’s perhaps most troubling in all of this is why this conversation isn’t happening prominently due to lack of awareness and education. One thing seems certain though; as long as pollution is consistently linked to dangerously high risk factors of prenatal and early childhood development of Autism without addressing the pollution first, we might as well accept the notion that everyone will – eventually – be autistic. Hopefully they will embrace their lineage with greater ease than the rest of us.
It should also cause us to re-examine what is critical to teach our children and give them the vocabulary, context, and tools to better advocate for themselves – to recognize what they struggle with, and to meet those struggles with empathy and compassion. Shaming children for poor attendance is both cruel and pointless. Asking kids to “suck it up” or to “get with the program” is a shameful dismissal of their struggles, dehumanizing, and conformist (which in the case of ASD is what leads many to begin masking and starting them down a path of exhausting self-doubt and loathing). If we are not empowering our future generations with the tools to advocate for themselves and keep them suffering in silence with the hope that they will eventually “fly right”, we might as well refer to every child as another Boeing 737. We need to do better; we need to embrace neurodiversity in ways that aren’t purely symbolic or ceremonial, but in ways that are genuinely inclusive and socially beneficial.
This is why Autism is a huge deal for me, and these are some pretty big reasons why it should be a huge deal for you. Autism makes humanity better so long as we stop trying to cure what makes us unique – we will be here for a VERY long time, so please, get to know us better.