UNMASKING AUTISM:
Devon Price

9 pages into this book, and it was already life changing to have someone so clearly and eloquently express life struggles that were so relatable to my own. And thus began a deep dive into this thing that's been under my nose for my entire life, yet somehow I evaded until I was 41 years old: autism.

This book is written specifically for those of us who’ve been living masked lives, and details how we can disentangle from the false personas we’ve built up around ourselves, and be who we truly are.

The introduction goes into some of the ways that we suffer from having to hide ourselves and from trying to fit in, and the stigmas around autism that often leads families to avoid getting help for their children, like (legitimate) fears of ostracization and social exclusion. Autism traits are often inter-generational and there can be a lot of shame and secrecy around that.

As I’ve read in other sources, people with low support needs (or high functioning) autism, are 6 times more likely to take their own lives than the average person. Many of us struggle with substance abuse issues, eating disorders, mental health issues and we're vulnerable to abusive relationships. The struggles we face are real, and the need for healing and acceptance is profound.

The first exercise in this book is to find 5 moments from the past where one felt FULLY ALIVE, and I appreciated being asked to do that, as I realized that I’ve had many such moments and I often lose perspective on how fortunate I am in so many ways. I also realized that many of these times were drug and alcohol fueled, and I chose to keep them in, because I wanted to be honest about how powerful different substances are in providing a respite from the torments of a hyperactive mind and a hyper tuned nervous system. I also wanted to acknowledge how much of a struggle it is to find healthy ways to access similar states of mental and physical release and/or placation.

The book goes into defining autism, and the author sees the main factor being that we perceive the world from the “bottom-up” so to speak, or as disconnected fragments of sensory inputs that we slowly piece together until we can see the full picture; whereas “allistics” or those who aren’t autistic are able to perceive in a more "top down" or broad way. Though people who have traits associated with ADHD also often perceive the world from the “top down”, and they struggle to interact with so many sensory elements at once.  There's also a lot of cross-over between autism and ADHD, hence them both being lumped under the umbrella of "neurodiversity"

I’ve also heard autism traits simplified as symptoms of processing an excess of sensory input, and how we’ll often shut down or melt down from not being able to assimilate all of the information that we’re taking in.

Every aspect of neurodiversity spreads out into endlessly complex tentacles of fractal swirls...

One thing that was difficult for me to accept was the constant referencing of autism as a disability, and this is something that came up for me when I started letting people know that I was autistic. I remember one of my co-workers using the word “disability” in response to my identifying as autistic; and although I didn’t respond to her about it, I later reflected on the fact that I don’t see myself as disabled, and I never have, even when I was dealing with some pretty extreme mental health challenges. I see myself as a vulnerable person who struggles to find a safe and nurturing place in the world. I see the world as a hugely destructive and fucked up place, and the fact that I don’t fit in seems like an able-minded and healthy approach to take. Having an emotional breakdown after going into a shopping mall or driving in traffic feels like a very natural response to an extremely messed up way of living that is destroying the natural environment that we depend upon for our survival, and causing all kinds of mental and physical ailments among nearly all humans.

At the same time, I understand that for many people it’s important to have their sensitivities recognized as a disability in order to get the support that they need, so it’s ultimately a personal decision as to how each person wishes to be defined - if they wish to be defined at all.

Also, when the author uses the word disabled, for them it means “we are robbed of empowerment and agency in a world that is not built for us.” And so from their viewpoint, recognizing autism as a disability forces society to change and adapt to accommodate the needs of autistic people, which is a positive thing. Though from my personal perspective, I don't want shopping malls to be modified to be more friendly to my sensitivities: I want them to be dismantled and converted into free housing and planter boxes with 24-hour Tangerine Dream concerts in the parking lot.

I also recognize that this book is written from the perspective of a White/Western, university educated, middle-class person who's writing through a very scientific lense.  I think that there's much to be explored when it comes to the spiritual and psychic realities of so many people who get labelled as, or who identify as, autistic. I also think that most of how autism has been defined is through the gaze of a society (i.e the dominant Christian / Western / colonial paradigm) that doesn’t accept diversity in general - and that autism might express itself very differently if everyone was accepted and loved as the unique and creative beings that we are, rather than being encouraged to conform to unrealistic and limiting societal standards. As Devon put it: “essentially no one lives up to neurotypical standards all of the time, and the rigidity of those standards harms everyone.” Devon acknowledges that most of how autism has been defined up until recent years was “developed with wealthy, white, gender-conforming boys in mind.” and within a "very rigid set of criteria”.

The book went into great detail about different terminologies as they relate to autism. Autism is capitalized all throughout the book and is not referred to as something one "has" or as if it's a disease. Also the terms “high support needs” and “low support needs” are used, rather than "high" or "low" functioning.

So many passages like these ones jumped out at me:

“At times I can be so intensely focused on a task (such as reading or writing) that the rest of the world entirely drops away. When I’m hyper-fixating I fail to notice things like someone speaking to me or smoke filling the room because I forget to turn the oven off. At other times, I’m an anxious and distractable wreck, unable to make my way through a single sentence of a book because my pet chinchilla is hopping around in his cage and making the bars rattle. These two very disparate responses have the same root cause: the over excitability of Autistic people’s neurons and the inconsistent way that we filter stimuli.”

“It takes many years of research and meeting real-life counter-examples for most of us to recognize Autism isn’t the cold, robotic condition we’ve been told it is. Being exposed to these misconceptions and shallow stereotypes can have a profound impact on how Autistic people see ourselves, and which qualities we aim to mask.”

“I also absorbed the idea, common to many 'gifted' children, that a persons intellectual potential belongs to society, not to themselves, and they owe the world greatness to justify their oddness.”

“Hiding self-destructiveness behind a mountain of achievements isn’t functioning, not really. The very concept of 'functioning status' is predicated on the logic of capitalism and the legacy of the Protestant work ethic, which both have trained us to believe that a persons productivity determines their worth.”

“When we unmask, we get to reexamine every choice we’ve made to 'Fit in', and begin to construct more authentic and affirming lives.”

“The autistic people who wind up needing to mask the most are usually those who are undiagnosed due to things like gender, race, or socioeconomic status.” .. “.. members of these marginalized groups are simply not given as much social latitude to be strange or disruptive.”

One thing that I reflected on is that sometimes those of us in Western countries who come from diverse backgrounds can have more leeway as far as behaviour is concerned, as we're already seen as outsiders, and so autism traits don't stand out as much.

In the 80's and 90's, dressing like a punk or goth or looking super alternative was still quite taboo; and most workplaces weren't accepting of piercings, tattoos or even strange hair cuts - like my mohawk that I always had to cover up with a hat. Especially in the 80's, many punks got the fuck beat out of them; and I was also beaten and mugged at a bus stop in Vancouver in the 90's after being called a "Marilyn Manson".

Getting bullied sucks ass, but being part of a subculture gave many of us the freedom to be whoever we wanted to be, and many traits that are associated with neurodiverstiy and seen as anti-social or subversive were completely accepted in underground music scenes. Had someone suggested to me that I was autistic or had some kind of disease or disability when I was a teenager, I would have been very pissed off, and rejected it utterly. Any kind of intervention would not have been met favourably on my part and I definitely would have rebelled in even more extreme ways that I already did.

I made my mom happy cry letting her know about all of the things that she did right when I was growing up (I've been pretty hard on her about all of the things that she did wrong for most of my life, so it was an important conversation). I was afforded a rare amount of freedom during my adolescence, and was allowed to explore many strange and subversive interests (including serial killers, death scene videos and gory horror films). I was never forced to go to school on days that I felt overly anxious, and I was given permission to drop out of gym class. There were also a lot of great teachers around me who went out of their way to support me and encourage my intellectual and creative pursuits (and some complete fucking assholes as well, like the art teacher at my high school with the cock sweeper moustache who kicked me out of his class, but that's another story).

The reality is that most autistic people don't have the kind of support and acceptance that I did, and there are even places in America where people are given shock therapy in order to control their behaviour.

And BIPOC people are often more vulnerable to abuse, as behaviour that's seen as strange or unusual can trigger acts of violence that are rooted in bigotry and prejudice.

What would I hope to get out of a diagnosis? For me it comes down to acknowledgement and validation, and the more that I learn about autism and feel comfortable within it, the less I feel the need for a diagnosis. I think that another reason why I don’t care for a diagnosis is because I’ve already been through the mental health system and I don’t want to be probed into, medicated, stigmatized or infantilized in any way ever again.

The author acknowledges that getting a diagnosis is a double edged sword: “Autistic children who are diagnosed when they are young experience both greater access to resources, and more intense, institutionalized stigma.”

Also, many people (myself included) would not be able to afford a diagnosis. Where I live, it costs around $6000.

A lot of people are moving away from the word “Aspergers”, as the man who coined the term was active during the Nazi era in Germany and Austria, and was complicit in the genocide of disabled children who were deemed unable to integrate into the German "Volk". At the same time many people, like Anand Prahlad who wrote a book called The Secret Life of a Black Aspie, still resonate with the term.

I recommend the article "Asperger, the Nazis and the children - the history of the birth of a diagnosis" by Ketil Slagstad. As he put it, "The story of Hans Asperger, Nazism, murdered children, post-war oblivion, the birth of the diagnosis in the 80's, the gradual expansion of the diagnostic criteria and the huge recent interest in autism spectrum disorders exemplify the historical and volatile nature of diagnoses: they are historic constructs that reflect the times and societies where they exert their effect." 
 
I also feel the need to say that I don't think Hans Asperger and other eugenicists who came to prominence during the Nazi era would be the best people to determine how "empathy" should be assessed, as a 'lack of empathy' was one of the major traits used to define those "diagnosed" with "Aspergers disorder". Further research has uncovered the likelihood that autistic people are just as capable of empathy as everyone else, it just expresses itself differently. Autistic people are generally more inclined towards intuitive and emotional empathy, whereas non-autistics are often more adept at cognitive empathy and picking up on social cues.  Interestingly, this would make non-autistics more inclined towards sociopathy and psychopathy.  Check out Dr. Damian Milton, who talks about the "Double Empathy" quandary.

Then there's Aspergers Are Us, a travelling comedy show put on by four White middle-class autistic men, who are representative of the dominant Aspergers archetype, yet the main person involved, Noah Britton, is one of my favourite autism advocates. I highly recommend checking out his Ted Talk.