Self Diagnosis Isn't "Valid." It's Liberatory.
Self Diagnosis Isn't "Valid." It's Liberatory.
If Autism is a neutral source of human diversity, why the hell would we need to diagnose it?
This piece was originally published to Medium on February 9, 2022.
A few weeks ago, I was forwarded an email that the editor of the publication Artfully Autistic had sent to one of their writers. The writer had just finished working on a piece in support of self diagnosis, in which she referenced my work. Artfully Autistic’s editor removed these references and links, because, according to her, I am faking being Autistic and taking advantage of the Autistic community. The full email is below:
From: Artfully Autistic
To: [redacted]
Sent: Monday, December 27, 2021 5:01 PM
Subject: “Self Diagnosis Is Valid” / Devon Price
[recipient redacted],
I Published your most recent Story “Self Diagnosis Is Valid” and it is a great Story. Thank you for your Submission.
. . .
A Protocol of our Publication is that we take a light-handed approach to Editorial. For the most part, we very rarely touch the Writing of other Member Writers, unless it violates Medium or Publication Rules.
However, for your particular story something new has arisen that I have to bring to your attention.
You see, I had to delete the part of your Story which Tags and references the Medium Writer, Devon Price.
Devon Price is not actually Autistic. I know with total and complete certainty that Devon Price is an imposter, basically impersonating someone who is Autistic for personal gain. Sort of a sick form of Reverse Masking.
Just in a way that those of us who are actually Autistic may attempt to Mask, and even be successful at it for an extended period of time, inevitably it is unsustainable.
Everyone who attempts to Mask for an extended period of time ultimately will break down when their ability to maintain it has reached its trajectory. It is well known how detrimentally costly to the Mental Health of an Autistic person that Masking can be. The only cure for Masking is to be our authentic Autistic selves.
Although Autistics who Mask may successfully Mask their Autistic behavior some of the time, or even most of the time, they cannot do it all the time.
Ultimately, there will come a time when they slip up and make a social faux pas in their attempts to suppress their Autistic behaviors, and it will become evident to others when that happens.
Just in the way that Autistics who attempt to Mask slip up and make social faux pas’ that reveal their Autistic traits, the same thing happens when those who impersonate someone who is Autistic.
They too will also slip up and make a social faux pas that will be obvious that they are indeed not Autistic, as their true Neurotypical traits will be revealed.
Masking is not sustainable, whether it is by someone who is actually Autistic, or someone who is pretending to be Autistic.
I have read many Stories by Devon Price, and I have read many examples within his Writing where he slips up and reveals his authentic Neurotypical self.
Any Writer who attempts to impersonate someone who is Autistic, the Truth will become self-evident within their Writing, as it is just not sustainable, and it will be revealed that they are Neurotypical.
. . .
I know the Truth and I have the Proof.
Devon Price is NOT Autistic.
. . .
I can give you many examples of why I know that this is true, and if you like I will send them to you, but believe me, there is no way that Devon Price is Autistic.
This person is exploiting those of us who are actually Autistic and that is just not acceptable.
. . .
Since this just came up for the first time, from here forward it will be a Rule of this Publication that Tagging or Referencing any other Person who impersonates someone with a diagnosis that they do not have is not acceptable.
. . .
Devon has fooled many, many people.
[Writer’s name], I value you as a Writer tremendously. However, in regard to Devon Price, don’t fall for it. Devon is a fake!
. . .
Sincerely,
[Redacted]
Artfully Autistic Advocate for Autism
It was interesting to see this editor asserting that I am “faking a diagnosis I do not have” given the context — editing a piece that supports self diagnosis of Autism. The final piece that ran in their publication, “Self Diagnosis Is Valid” explains that since obtaining an Autism assessment is incredibly expensive and difficult in many parts of the world, many people in our community have no choice but to self diagnose. The author describes how, despite feeling imposter syndrome regarding her own self-diagnosis, the Autistic community has generally been welcoming to her, and has accepted her identity.
I don’t understand how the editor of Artfully Autistic could happily sign off on a piece that supports the right of Autistic people to define ourselves, then criticize and attempt to blacklist another Autistic person for having exerted that right. I was also flummoxed by the editor’s claim that I am “faking a diagnosis I do not have” given that my entire framework for understanding Autism is that diagnosis does not define who we are.
I just had to know what had left this editor so convinced I was faking being Autistic — so I emailed her directly. Here is her reply:
Artfully Autistic 26 January 2022 at 12:41
To: Devon Price
Demon, [Author’s note: Yes, she really did address me as “demon”]
Oh, I read closely. I read very, very closely. I accidentally sent an email to the wrong person because I have poor eyesight.
The fact that I know that you are not Autistic is evident within your Writing.
Your outright rejection of diagnosis as not being a useful framework for understanding what Autism is, or who belongs in the community is invalid.
Having a Formal Diagnosis is critical to those who are Autistic and who also are intellectually challenged. Without a Formal Diagnosis, they would not have access to much needed support and services.
You are not Autistic and you have never given a valid reason for not getting a Formal Diagnosis. Are you afraid you will find out the truth?
This email ends our personal contact. Any further emails from you to this email address shall be deemed to be and agreed to be considered harassment. Do not contact me again.
Sincerely,
[redacted]
Artfully Autistic Advocate for Autism
Here the editor’s claims are revealed to be quite muddy. She asserts both that I am faking an Autism diagnosis, and that I state in my writing that I am not diagnosed. So which is it? And considering I explain throughout my work that the assessment process is both deeply flawed and inaccessible, how can she claim I have provided no explanation why a person might not pursue it?
I have deliberately chosen not to discuss my Autism in the context of diagnosis or assessment in any of my work, because it was not the formal assessment process that helped me figure out who I was. My own journey of Autistic self-discovery was set into motion after a relative was diagnosed, then sat down and shared with me his suspicion that nearly everyone in our family was also Autistic. That heart-to-heart conversation and moment of recognition is when my neurodiverse identity began to form.
As I researched the work of actually Autistic people, watched their videos, read their blogs, and went out into Autistic spaces to meet more people like me, my understanding (and acceptance) of myself continued to crystalize. It was fellow Autistic people who opened the door to me developing self-knowledge. It was the Autistic community that led me through the dark of alienation and into the light of belonging. Psychiatry did not do that for me. And it would have been impossible for me to explore an Autistic identity if the community had been hostile toward the questioning or undiagnosed.
The procedure for diagnosing Autism was designed with young, white, cisgender male patients with visibly obvious symptoms in mind. To this day, it remains very common to be turned away from even being assessed for Autism for being too old, too feminine (or effeminate), too socially appropriate, too good at eye contact, too Black, too brown, or too trans. The experience of biracial, gay Autistic actor Wentworth Miller is illustrative:
Wentworth Miller, Mental Health Stigma, and Masked Autism
Autism is underdiagnosed in people of color and queer folks, and the life of Wentworth Miller is a great illustration…
When you are Autistic and your identity does not line up with the “white boy obsessed with trains” stereotype of the disability, you are often forced to develop what I call masked Autism. You learn to hide your true feelings and camouflage as neurotypical. This is incredibly tiring and unpleasant. Often, when a masked Autistic finally does seek help from a therapist or psychiatrist, they get turned away from care. They’ve become so adept at hiding their disability that professionals don’t believe it even exists.
Given how systematically psychiatry excludes Autistics who are Black, brown, poor, gay, trans or otherwise marginalized, we cannot as a community rely on psychiatry to define who we are. In fact, it runs counter to the goal of us earning greater acceptance and freedom in society for us to fall back on exclusionary assessment procedures and gatekeeping. Requiring a diagnosis to identify as “Autistic” will ensure that our community forever remains small, predominately white and rich, and under the control of psychiatric institutions that do not view us as competent, fully realized human beings.
When it comes to the diagnostic status of people in our community, I am very deliberately ignostic: I don’t care to know, I never ask, and I never share information about my own status either. I believe drawing a distinction between diagnosed Autistics and the self-diagnosed is counter to the project of disability justice.
The Autistic self-advocacy community operates under the paradigm of neurodiversity: we view our disability as deserving acceptance and accommodation, not treatment or a cure. As neurodiverse people, we believe we are marginalized because society discriminates against us and excludes us, and that we have always existed and always will. Some aspects of being Autistic might be painful or debilitating (such as sensory overload) but that doesn’t mean that we need to change any more than a non-Autistic person who gets depressed following a profound loss needs to change. Rather, it’s society that must to change to include us and treat our pain as valid. Taking steps to make the world more inclusive for Autistics will ultimately benefit everyone: no one enjoys painfully bright fluorescent lights or vague, indirect communication, no matter their neurotype.
Am I “Autistic Enough” to Count as Autistic?
Neurodiversity exists on a spectrum — so where do we draw the line?
Under the neurodiversity paradigm, drawing a conclusive line between who is Autistic “enough” and who isn’t doesn’t really make sense. As the Autistic Self-Advocacy Network puts it, the neurodiversity perspective is that no two brains are exactly the same. All minds vary in their abilities, styles of thinking, ways of processing reality, and needs — and every single one of those minds belongs in society and is deserving of support. If this really is the case, we can’t logically claim that some brains are so different they need a diagnosis in order to be treated with care.
The concept of embracing neurodiversity and the process of psychiatric diagnosis are fundamentally incompatible with one another. Where neurodiversity accepts, diagnosis pathologizes; where neurodiversity argues for expanded social norms, diagnosis restricts behavior and labels it abnormal or sick. Neurodiversity allows Autistics to join up with a wide swathe of people: ADHDers, people with psychosis, Borderline Personality Disorder sufferers, Narcissists, trauma survivors, people with seizure conditions, and more, and gives us the power to see how ableism harm us all. Psychiatric diagnosis says that we aren’t all part of a larger community affected by discrimination, we are distinct, small groups of unwell people who need individual treatment under their supervision (and control).
Of course, it is completely fine for an individual Autistic person to seek diagnosis in order to gain the academic accommodations or legal protections they might need. The fact that many of us must currently play by the rules of the system in order to get our needs met is not evidence that the system is just or correct. If we want to liberate the Autistic community as a whole, we have to stop believing a psychiatrist’s approval validates who we are.
For many decades, a diagnosis of gender identity disorder was required in order to “really” be trans, in the eyes of the government and healthcare system. To access hormones or surgery as a trans person, you had to undergo a lengthy period of gender therapy, live as your target gender out in the “real world” for a year, and prove through elaborate assessment processes that you really were the gender you said you were.
Psychiatrists, surgeons, and endocrinologists barred trans people from care for all kinds of reasons. If you were a trans woman who liked wearing jeans, you might get turned away for not being feminine enough. If you were trans and fat, a surgeon might refuse to do any work on you, because you were never going to look like a thin cisgender person. If you were both gay and trans, it was basically impossible to have your identity validated. I’m a gay trans man myself, and for a long time gender professionals claimed people like me could not exist, and were actually just confused straight women. I used to believe that about myself, and it was devastating.
While the psychiatric community was busy denying their existence, scores of nonbinary, gender nonconforming, and queer trans people were still out in the world anyway, living their lives and trying to find ways to survive. They found one another and built up supportive communities. They traded tips and tricks on how to lie to professionals in order to get the treatment they required. And they organized and lobbied for a better, more liberatory approach to trans identity and healthcare.
As a result, in places like the United States we have slowly shifted away from gatekeeping and toward the informed consent model of transness. Today, trans people in the US can simply tell informed consent clinicians what their gender is, and be believed — then receive the exact medical care they desire, after being briefed on its likely benefits and risks. Under informed consent, you do not need a gender identity disorder diagnosis to “really” be trans, because transness is not a sickness and never was.
Instead of putting all the power to define transness in the hands of medical providers, informed consent returns that power to trans people ourselves. This freedom has allowed the community to flourish and grow, with countless people who would have been blocked from transition in the past now able to access it and to live as themselves. I didn’t begin transition myself until informed consent was made available in my area. If medical gatekeeping had remained the law of the land, I would have either tried to access hormones illegally, or I would have quietly languished in the closet forever, eating disordered, depressed, and wanting to stop existing.
Informed consent was driven by the idea that each trans person has the ability to know themselves and figure out what they need. And that is exactly how those of us in the neurodiverse community should be approaching Autism. Just like transness (and gayness before it), Autism was categorized for a long time as a mental illness. But that way of understanding our identity has only left us excluded and unempowered. In order to resist our own oppression, we must reject the notion we need psychiatric approval to be ourselves.
The more people find a home within our community, the stronger we are. The more that a diverse coalition of people realize they share common struggles and frustrations under ableism, the more we’ll be able to advocate for the broader social changes we require. When we embrace an understanding of Autism that appreciates diversity rather than bemoaning our supposed defects, we are able forge lasting bonds with each other, unmask ourselves, and truly believe we are okay as we are.
One thing that the editor of Artfully Autistic and I agree on is that a life spent hiding one’s disabilities is not sustainable. Masking as something you are not eats away at you in profound ways. As someone who used to be closeted about being both Autistic and trans, I know that fact better than most. Eventually, if you’re going to survive, you must find spaces where you are trusted, and feel safe enough to open up. There is only one way to provide that kind of supportive care to fellow Autistic people: by believing that people are who they say they are, and recognizing that when we include all neurodiverse people in our spaces, we are better off.
The trans community figured out a long time ago that it only hurts us to try and litigate who really needs healthcare, or squabble over doubts that some people are not “really trans.” I hope that my fellow Autistics come to realize the same thing about holding a disabled identity — and soon. The myth that disabled people are just lazy opportunists who are faking their conditions is a very old one, and it’s only ever brought us discrimination and scrutiny. Social acceptance is not a finite resource to be given to the select few. In fact, acceptance only grows the larger and prouder our community becomes.
So no, I don’t believe self-diagnosis is valid. I believe it is essential, just, and revolutionary.
