Something Like Human
(photo credit: Carmen B. Pingree Autism Center of Learning)
cw/tw: suicide, substance abuse, hypersexuality
If a psychiatrist doesn’t diagnose someone with a mental “disorder/illness/disease,” does that mean that the person doesn’t have said “disorder”? And what happens when a diagnosis is inaccessible to the people who need it?
Unknowingly, those questions has hung in the air for me across my entire life. And they’re questions I’ve spent most of this year trying to answer.
While it is cliché to say – even more so due to the awareness of said cliché – I was definitely an outlier growing up. I was very quiet, I wasn’t very social, I was highly sensitive, I got mad pretty quickly, I cried a lot (aka I cried more than boys (I’m gender neutral, btw; he/they are my pronouns) were expected to, which is not at all), I was always one of the smartest students in my classes, and prior to fifth grade none of that mattered much. At home, being highly sensitive was an issue every now and then (mainly because my Aunty was there to help keep things in check, and act as a buffer between me and my mom (who always took issue with how sensitive I was)), but that was it. My classmates and friends let me be – with the exception of a rare few who were my archenemies – and school was fine.
And then my family and I moved to the Stevenson Commons in the Bronx, I became the new kid again, and a massive shift in my understanding of who I was occurred. All the things that made me different from people, especially in comparison to my older brother, were weaknesses that everyone seemed superhumanly attuned to relentlessly attack.
In my previous experiences as The New Kid™️, classmates (who later became friends) comforted me and acted as guides while I got acclimated. On my first day as The New Kid™️ in my new fifth grade homeroom class, a classmate (who later became my introduction to abusive platonic friendships) asked me, “Are you a boy or a girl?” as I was crying into my arms on my desk. And so began eight years of intense abuse and neglect (both at home and at school) because I was me, and being me was always a social sin.
Everyone around me seemed capable of doing what “normal” pre-teen and teenage human beings were supposed to be doing – talking a lot, making friends, cutting ass on each other, having crushes, wanting to date, etc. – which at first made me question if I was human since people treated me as if I weren’t, then I wondered if I was defective since people treated me as if I were defective. I also started to wonder if I was actually adopted like my older sibling joked when we were younger because I started to feel like I couldn’t possibly be related by blood to the people I was supposed to call family.
By the time I graduated high school, I was incredibly burned out from both having to weather all the abuse and neglect, and trying to respond to it in hopes that if I stood up for myself that it would somehow change things (which it never did).
Then I was suddenly granted freedom from the closed loop that was my insular social, school, and home life. And like Mike Shinoda says in Linkin Park’s song “Part of Me,” “Freedom can be frightening if you’ve never felt it.”
I was able to go out and make friends and be somewhat close to who I actually was deep down around people in places so far removed from my life before then.
It felt good . . . liberating even . . . but only for a moment.
It didn’t take long for the realization to set in that I had to really figure out who I was, and why I was so noticeably different from everyone around me (including at places I worked at).
Soon enough I found myself amidst a self-destructive, eleven-year long journey of trying to find anything – alcohol, drugs, sex – to help me perform being human the way I was expected to, and quell all the anger and self-hatred I carried around from being treated as I could never be fully accepted by anyone because I wasn’t fully human to them even though part of me always knew there was nothing fundamentally wrong with me as a person.
It all culminated in a failed suicide attempt that cost me a lot of what I then considered meaningful friendships.
After that, I almost made peace with the idea that I would likely never really find what I was looking for, that obsessing over finding an answer in hopes that I could finally make sense of why it had to be me who people decided to bully relentlessly was a fool’s errand.
Almost.
But then a former abusive roommate of mine brought it to my attention that I may be autistic.
And things started to click.
I was excited by the idea that I finally found the answer I nearly killed myself trying to find, and skeptical of it as well because of how simple it was. So I spent a few months reading everything I could about “autism” from psychiatrists, research papers, and from fellow autistic people as well as watching a ton of YouTube videos about “autism” from autistic people. And I felt confident enough to publicly self-diagnosing as autistic. I even took multiple different online autism diagnostic tests just to make sure, and all answers pointed to the fact that I am autistic. A minimally verbal autistic person at that.
Throughout that process and up until recently, I spent a lot of time going over different moments in my life that, in hindsight, screamed “I’m autistic!” Sometimes I’d be filled with joy and feel a sense of euphoria because I finally understood myself like I had always hoped, and it allowed me to continue healing so I could become the person I need to be for myself. Other times, it brought sadness because I was denied so much time to learn to be myself.
Then I began the journey for a “professional diagnosis” to have it on record since self-aassessment is, unfortunately, widely frowned upon and misunderstood to be “illnesses anxiety disorder” (even though self-diagnosing is not inherently more harmful and inaccurate than professional/medical diagnosing anyway), which leads me back to the two questions I asked at the beginning of this piece:
If a psychiatrist doesn’t “diagnose” someone with a mental “disorder/illness/disease,” does that mean that the person doesn’t have said “disorder”? And what happens when a diagnosis is inaccessible to the people who need it most?
Before I answer that, I’ll address the quotation marks around disorder, illness, and disease:
‘How has the DSM evolved to become seen as the “authoritative medical guide to all of mental suffering”?
The credibility of psychiatry is tied to its nosology. What developed over time is the number of diagnoses, and, more importantly, the method by which diagnostic categories are established.
You’re a practicing psychotherapist. Can you define “mental illness”?
No. Nobody can.
The DSM lists “disorders.” How are disorders different from diseases or illnesses?
The difference between disease and disorder is an attempt on the part of psychiatry to evade the problem they’re presented with. Disease is a kind of suffering that’s caused by a bio-chemical pathology. Something that can be discovered and targeted with magic bullets. But in many cases our suffering can’t be diagnosed that way. Psychiatry was in a crisis in the 1970s over questions like “what is a mental illness?” and “what mental illnesses exist?” One of the first things they did was try to finesse the problem that no mental illness met that definition of a disease. They had yet to identify what the pathogen was, what the disease process consisted of, and how to cure it. So they created a category called “disorder.” It’s a rhetorical device. It’s saying “it’s sort of like a disease,” but not calling it a disease because all the other doctors will jump down their throats asking, “where’s your blood test?” The reason there haven’t been any sensible findings tying genetics or any kind of molecular biology to DSM categories is not only that our instruments are crude, but also that the DSM categories aren’t real. It’s like using a map of the moon to find your way around Russia.’
This isn’t to say that mental and emotional distress aren’t real. It’s more that psychiatry is flawed in very obvious ways and is in desperate need of an overhaul, which is where critical psychiatry comes in. Because of racism, white supremacy, anti-Blackness, misogyny, homophobia, transphobia, and every other system of oppression, getting a diagnosis – let alone the correct one – is not as easy as some may think, especially because of how systems of oppression affect how psychiatrists and psychologists interact with marginalized communities (which also highlights the biggest issue in our current push for everyone to get professional help in regards to mental health). Not to mention that the research used to inform how we understand mental health conditions suffers greatly from a lack of diversity.
So, what happens when a mental and emotional distress shows up in a Black autistic patient, and most professionals’ only understanding of it is based on how it presents in white boys and white men who come from Western, educated, industrialized, rich, Democratic backgrounds? If they’re even properly informed about mental and emotional distress to begin with (since most people, psychiatrists and psychologists included, regard “autism” as something to be feared and dreaded, and treat autistic people as if they’re only something like human . . . if they even consider the humanity of autistic people at all).
And what happens when psychiatry and psychology don’t take into consideration how prevalent PTSD and c-PTSD are in marginalized communities because their only understanding of those conditions are based on how they present in white people who come from Western, educated, industrialized, rich, Democratic backgrounds?
In my experience, psychiatrists and psychologists opt to dismiss anything I say because after two minutes of conversation they decided I wasn’t autistic since I was “too self-aware,” “too smart,” “too functional,” and I made eye contact. I’ve also been just as quickly diagnosed as possibly having “borderline personality disorder,” and told that it’s just “severe depression and trauma” that’s the issue not autism (as it autistic people can’t also be “severely depressed and traumatized). And I’m sent back to square one in my attempt to get help that seems almost mythical at this point.
So what is a severely depressed and traumatized queer gender neutral autistic Black person supposed to do about getting the right help from an almost completely homogeneous field of professionals that hardly even have experience considering “autism” outside of its limited white scope? Do I keep hopping from professional to professional in hopes that one of them will be well-informed about the Black autistic community, queer and trans-affirming, willing to respect me enough to take what I say seriously, and be covered by my health insurance or offer free “autism” diagnostic tests knowing the chances of that are already incredibly slim? And if this is my only course of action, it’s both an indictment of psychiatry and psychology and a reason why we need to adopt a radical and critical approach to psychiatry and psychology .
The inaccessibility of many mental health resources due to ableism, racism, misogyny, white supremacy, etc. should be a bigger concern now that we’re normalizing talking about mental health issues, and telling people to get professional help. It creates the problem where so many people have gone through and are currently going through life without access to services that could help them lead healthier and more fulfilling live, especially because the stigma attached to every mental health condition and I would argue that labeling them as disorders or illnesses or sicknesses makes people less likely to see professional help since no one wants to be associated with anything that people perceive to mean “crazy or sick in the head.” And even if people do seek professionals help, the difference between getting the right diagnosis and proper treatment and getting misdiagnosed and being subject to neglect, abuse, trauma, and other forms of harm (ex: the harm caused by psychiatric medication, and sexual abuse in psych wards) is basically which psychiatrist you end up with.
It isn’t talked about enough (especially due to racism, white supremacy, antiBlackness, ableism, and eugenics in leftist/radical/revolutionary spaces), but we can’t ever hope to build an equitable, inclusive, and just world if we don’t also demand radical change in psychology and psychiatry.
While I understand there’s a general hesitancy around critiquing psychiatry and psychology for fears of entertaining/engaging in pseudo-science, anti-psychiatry, and pseudo-intellectual thought that exists alongside the glorification of psychiatrists and psychologists due to the idea that their education and training makes them inherently more intelligent about the human mind than less intelligent and woefully self-unaware masses; we do ourselves a disservice if we never engage with psychology and psychiatry beyond just accepting what psychiatrists and psychologists say at face value.
It’s imperative that we become as engaged with psychology and psychiatry as we say we need to be about politics at all levels of society, especially in interpersonal relationships.
