Diagnosis

Profile of a woman with rainbow colors coming from her head

Self diagnosis is not just “valid” — it is liberatory. When we define our community ourselves and wrest our right to self-definition back from the systems that painted us as abnormal and sick, we are powerful, and free.

You can pursue formal diagnosis if you want, for legal protection and educational access. It will never be what makes you Autistic. If you’re uncertain whether you are, meet more of us and join in community with us. We need each other far more than we need psychiatric approval.

Dr. Devon Price

If you are wondering whether you are Autistic, spend time amongst Autistic people, online and offline.  If you notice you relate to these people much better than to others, if they make you feel safe, and if they understand you, you have arrived.

A communal definition of Autistic ways of being

Autistic people / Autists must take ownership of the label in the same way that other minorities describe their experience and define their identity. Pathologisation of Autistic ways of being is a social power game that removes agency from Autistic people. Our suicide and mental health statistics are the result of discrimination and not a “feature” of being Autistic.

A communal definition of Autistic ways of being

Requiring diagnosis was counter to trans liberation and acceptance.

The exact same is true of Autism.

Dr. Devon Price

The concept of neurodiversity and the process of psychiatric diagnosis are fundamentally incompatible with one another.

Either you actually believe Autism, ADHD, and etc are neutral sources of diversity deserving of acceptance in society, or you think they are disorders that must be diagnosed — but it makes no sense to try and claim both those things simultaneously.

For decades a diagnosis of gender identity disorder was required to “really” be trans. But outside of that psychiatric gatekeeping system (which claimed absurd things like that gay trans people don’t exist) there were thousands & thousands of trans people existing as themselves.

A gender identity diagnosis disorder was never what made a person trans. In fact, that diagnostic process shut the majority of trans people out. Requiring diagnosis was counter to trans liberation and acceptance. The exact same is true of Autism.

Self diagnosis is not just “valid” — it is liberatory. When we define our community ourselves and wrest our right to self-definition back from the systems that painted us as abnormal and sick, we are powerful, and free.

You can pursue formal diagnosis if you want, for legal protection and educational access. It will never be what makes you Autistic. If you’re uncertain whether you are, meet more of us and join in community with us. We need eachother far more than we need psychiatric approval.

Dr. Devon Price

If you’re reading this book, you probably suspect that you or someone you know is a masked Autistic, or otherwise neurodiverse. I have been writing about my own journey of Autistic self-discovery for many years now, and every single time I post online about it, I’m inundated with messages from people who are questioning whether they’re on the spectrum, and want my advice on how to find out. Usually, their first question is how to get tested for Autism Spectrum Disorder. My initial response to that is to present them with three questions:

  1. Do you have health insurance that covers Autism assessments?
  2. Can you find an Autism assessment specialist in your area who has a proven track record of working successfully with Autistic adults?
  3. What do you hope to get out of a formal diagnosis?
Unmasking Autism: Discovering the New Faces of Neurodiversity

The first and second questions can prove quite dispiriting to answer. In the United States, many health insurance plans do not cover Autism assessment in adults.[69] A limited number of specialists are qualified to assess and diagnose Autism (your average psychologist can’t do it), and the diagnostic process typically involves multiple tests, screening surveys, and even interviews with the Autistic person’s family and friends. Without insurance coverage, this process can cost anywhere from $1,200[70] to $5,000.[71]

Even when a person can afford to be assessed, identifying a specialist who knows how to diagnose Autistic adults can be prohibitively difficult. My friend Seb (who’s in their mid-twenties) sought out an assessment in the UK and was subjected to tests clearly designed for small kids. A therapist asked Seb to arrange various toys on a table and make up stories about them (this is part of a common diagnostic tool called the Autism Diagnostic Observation Schedule, or the ADOS, and it was developed for use in children).[72] A questionnaire was given to Seb’s mother to fill out, and Seb wasn’t permitted to look at what she’d said. They were completely disempowered by the whole process. Some people whom I interviewed for this book reported being turned away by multiple assessors, for things as simple as being a woman, dressing well, or having voices that weren’t completely monotonous. Sometimes assessors decide to give adults labels they view as less stigmatizing, such as nonverbal learning disorder, rather than identifying them as Autistic explicitly.

“I had to see two specialists,” Crystal tells me. “The first one said basically the same thing my grandpa used to say: girls usually aren’t Autistic. You’re doing fine in life. Don’t worry about it.”

To this day, a majority of Autism assessment tools are based on the decades-old ones developed for white male children from wealthy and middle-class families.[73] With years of clinical experience, some experts learn to recognize Autism in those who mask. They may know, for example, that masked Autistics can make eye contact, though many of us stare too strongly by neurotypical standards, or for too long. They might understand that Autistic women and people of color have to appear friendly as a means of survival, so their tone of voice might not be totally flat. Perhaps they’re even aware of Autism’s link with substance addictions and eating disorders, particularly among people who have to fake neurotypicality all day long at their jobs. However, these facts are not a core part of how assessors are trained, and many spend their entire careers reinforcing old sexist, white supremacist notions of how the disability looks.

This brings me to my third question: what do you hope to get out of being formally diagnosed? It can come with serious social and legal benefits under the Americans with Disabilities Act (and laws in other countries like it), and other antidiscrimination statutes worldwide. You might hope that people will take your problems more seriously when a psychiatrist has validated them. A formal diagnosis means you can receive disability accommodations at school or work, and you can pursue a legal case if an employer or landlord shows documentable signs of bias against you. In some places a diagnosis can qualify you for a medical marijuana card, or a therapy animal. Family members who have told you that you’re whiny and lazy may finally get off your case when they realize you have a developmental disorder. A therapist or medical care provider may tailor their treatment of you to your neurotype. These are the kinds of outcomes many neurodivergent people hope for when they pursue formal recognition.

Unmasking Autism: Discovering the New Faces of Neurodiversity
Autism Self Diagnosis & Gatekeeping… Autism & Society

It has long been accepted that diagnosis is a privilege that many are not afforded. What is not discussed is how diagnosis itself feeds into the pathology paradigm that has surrounded Autistic people since Autism was first conceptualised. Requiring that a person be diagnosed Autistic is in and of itself a pathologisation of that neurocognitive-style.

One no longer expects a Queer person to be diagnosed with a disorder or condition, and yet we strive to be diagnosed as Autistic. While I recognise the privilege that having a diagnosis has given me, and I admit that my diagnostic paperwork saying “condition” instead of “disorder” filled me with joy; it has taken me some time to realise that my need to be diagnosed was in fact a perpetuation of medical models and pathologisation. You don’t need a licence to be Autistic. Formal diagnosis doesn’t magically alter the brain.

The New Normal: Autistic musings on the threat of a broken societys

Being Autistic is an identity based on a specific neurology. It is not inherently good or bad. There is nothing to be fixed or cured, so why force people to acquire a diagnosis? If a person largely identifies with the core experiences of being Autistic, then why should we deny them the right to identify as who they are? Should we not have accepted by now, in the 21st century, that neurodiversity is a natural phenomenon, and not a collection of ailments requiring intervention. The attitudes that surround the invalidation of the self-identified are nearly always rooted in internalised ableism and stigma.

Of course, a move away from diagnostic approaches would undermine what I would refer to as “the autism industrial complex” which largely consists of behavioural therapies and quack biomedical solutions, sold as the only way to separate your neurotypical child from the autism that has infected them. That industry has positioned itself as lord and master of Autistic people’s lives, and to step away from the pathology paradigm would be to cut the strings in their marionette show.

Indeed, when one considers all the harm that the pathology paradigm has done, it seems to me that a world where being Autistic requires a medical diagnosis is not one designed in any way to accommodate Autistic people. It is designed to serve a capitalist system that seeks to turn people into commodities to be bought, sold, and altered. I am a person, not a product.

Should the neurodiversity movement wish to achieve its aims of acceptance and equitable treatment for all neurotypes, then we must strive to move away from all medicalisation of the natural diversity of minds. Until this is done, the neurodiversity movement can not succeed. We must strive for a world where neuronormativity is abhorred in the same way that difference is in our current society.

I am not sick or broken, I do not require fixing. All Autistics have a right to life, no matter how “inconvenient” that life is for those around them. We must not accept a world where Autistic people are treated as second class citizens.

The medical model needs to die, and from it’s grave I hope that a new paradigm will spring anew.

The New Normal: Autistic musings on the threat of a broken societys

Unfortunately, a diagnosis is not a guarantee you will receive any of these benefits. Proving in a court of law that you’ve been discriminated against as an Autistic person requires extensive documentation[74] and is prohibitively expensive to pursue for most disabled people. Even though a diagnosed disability entitles you to accommodations on paper, many employers and educators refuse to provide them, or mistreat the employees and students who request them (for more on the limitations of the ADA and its inconsistent enforcement, see Chapter 8). And as much as I’d like to promise that being recognized formally as an Autistic will get judgmental friends and family off your back, I’ve heard too many counter-examples to claim that’s really the case. Your family members may find your disability even more threatening once it’s validated by a doctor, or they might use your diagnosis to undermine your judgment or infantilize you. This isn’t intended to dissuade you from seeking a diagnosis; I just don’t want anyone to have the impression that a piece of paper signed by a psychiatrist magically unlocks a suite of resources and social respect.

Additionally, an Autism diagnosis does not grant you access to any particular therapy or medication, because there are no evidence-based treatments for Autism in adults. Most therapists are not trained to work with Autistic adults, and many of them harbor very shallow, outdated understandings of what the neurotype is. Even those who do specialize in Autism are usually trained primarily in working with Autistic kids, “helping” them to behave in a more agreeable, passive fashion. Here in Chicago, I’m aware of just one therapist who is competent in treating Autistic adults who mask, and the only reason I know they’re competent is that other Autistic people have vouched for them to me. I do know several mental health providers in other cities who have confessed to me privately that they are Autistic, and love working with fellow Autistic patients. However, each of them has told me they cannot openly identify as Autistic professionally. There’s too great a risk that their colleagues would view them as incompetent or unprofessional if they were open about their neurodivergence.

Of course, even the idea of pursuing a treatment “for” Autism is predicated on the idea we are broken or sick. This is an idea the neurodiversity movement completely rejects. There is no medication for Autism, no cure for it, and no way of changing one’s neurotype. As a community, most Autistics oppose attempts to “fix” us. There are some modifications that can be made to existing therapeutic methods, to make them a better fit for Autistic adults, but unless a provider takes the time to self-educate, they may be unaware such modified treatments exist. For the most part, learning you’re Autistic is a journey of self-acceptance, community building, and growing self-advocacy, and you might not need or want a diagnosis to go down that path.

For all the reasons outlined above, I firmly support Autistic self-determination. I prefer the terms self-determination or self-realization to self-diagnosis, because I believe it’s more sensible to view Autistic identity through a social lens than a strictly medical one.[75] Diagnosis is a gatekeeping process, and it slams its heavy bars in the face of anyone who is too poor, too busy, too Black, too feminine, too queer, and too gender nonconforming, among others. The Autistics who lack access to fair diagnoses need solidarity and justice the most desperately out of all of us, and we can’t just shut them out.

Unmasking Autism: Discovering the New Faces of Neurodiversity

Living in our global industrialised society is traumatising, especially for hypersensitive Autistic people, and this has increasingly been the case since the earliest days of industrialisation, even before the term “autism” entered the vocabulary of the medical profession. 

Adults seeking a diagnosis of autism are often looking for an explanation of their lived experience, which often includes highly traumatic experiences, in many cases starting in childhood. Parents seeking a diagnosis for their child are typically driven by the fear that their child won’t be able to “succeed” in the competitive world of so-called educationjobs, careers, and social status

A global multi billion dollar autism industry has been built on the backs of Autistic people and is critically dependent on the ongoing traumatisation of Autistic people. This is glaringly obvious in terms of the perpetuation of traumatising behaviourismthat is sold as a “treatment for autism” to the parents of Autistic children, but it is not always quite as obvious in relation to the “treatment” of Autistic adults.

Discrimination against Autistic people is comparable to the level of discrimination against LGBTQIA+ people 50 years ago. The pathologisation of Autistic ways of beinghas led to what some critical researchers refer to as the Autism Industrial Complex

In this discriminatory cultural environment, many services from the autism industry must be considered unethical, and obtaining a diagnosis can be an invitation for potential abuse and exploitation, as illustrated in the account of adult diagnostic experience in Australia below. Even the most well meaning diagnostician will produce “offical” documentation that is coded in pathologising language.

Trigger warning: if you are currently keen on obtaining an official diagnosis of autism, the account of abuse and diagnostic trauma below may prompt you to rethink, and draw your attention to the Communal Definition of Autistic Ways of Being

Regardless of diagnostic status, the account below should prompt all Autistic people 

  1. to question the value of official diagnosis, 
  2. to consider the value of Autistic peer support networks
  3. and to focus on what can be achieved by co-creating healthy Autistic communities.
Autistic ways of being, trauma, and diagnosis | Autistic Collaboration

Where I saw the first irrefutable proof of myself, though, so many others saw a referendum.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir

I spent twenty-seven years trying to convince people that I was normal enough to accept, or at least leave alone, and no one ever fully bought it. When I finally knew why that experiment was such an ongoing failure, though, few believed that either. I was using it as an excuse. I was exaggerating. I was faking. I was not as autistic as someone else someone knew and was, therefore, not really autistic.

These comparisons only ever go in one direction. No one has ever said to me, “Temple Grandin is a successful scientist, writer and public speaker, and you have the career of a mildly plucky freelancer half your age. You can’t possibly be autistic.” I suspect that this is because no one is genuinely trying to weigh what they know about me against a set of diagnostic criteria, or fit me into their greater understanding of autistics in the world. What people are really doing when they’re trying to determine if I’m really autistic is figuring out if I make them uncomfortable or sad enough to count. If I show any coping skills, any empathy, any likability, any fun essentially any humanity–I complicate the narrative too much and usually end up ignored.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir

This separation between real autistics and people who are “just quirky,” “just awkward” or “almost too high functioning to count” is a mental dance that non-autistics have to do whenever they’re confronted with a 3-D autistic human being in the flesh. Otherwise everything they’ve ever thought, everything they’ve ever been told about us, starts to seem a little monstrous.

I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir

Most of us are haunted by the sense there’s something “wrong” or “missing” in our lives—that we’re sacrificing far more of ourselves than other people in order to get by and receiving far less in return.

Unmasking Autism: Discovering the New Faces of Neurodiversity

Further reading,

Published by Ryan Boren

#ActuallyAutistic retired technologist turned wannabe-sociologist. Equity literate education, respectfully connected parenting, passion-based learning, indie ed-tech, neurodiversity, social model of disability, design for real life, inclusion, open web, open source. he/they