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.
Dr. Devon Price
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.
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
A communal definition of Autistic ways of being
Requiring diagnosis was counter to trans liberation and acceptance.
Dr. Devon Price
The exact same is true of Autism.
Self-Identification
Self-identification offers advantages in that it could constitute a key step towards autistic (and also more generally neurodivergent) liberation, by transferring power into the hands of autistic people themselves
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
Self-identification is the most obvious alternative to a clinical diagnosis, and one of which many autistic people are now availing themselves (Lewis, 2016; Overton et al., 2023). Increasingly, research studies are inclusive of self-identified autistic people and when sensitivity analyses are performed, significant differences between those with and without a formal diagnosis have not been found (e.g. Cooper et al., 2017; Garau et al., 2023).
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
Many undiagnosed adults resort to self-diagnosis. The purpose of this descriptive phenomenology was to explore the experience of realizing a self-diagnosis of ASD among 37 individuals who were not formally diagnosed. Results revealed five themes: feeling “othered,” managing self doubt, sense of belonging, understanding myself, and questioning the need for formal diagnosis.
Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults – Archives of Psychiatric Nursing
A test for identifying Autistic ways of being by Autists for Autists
Instead of a diagnosis, the following test tends to deliver very reliable results. It does not cost any money, it only takes some time. For anyone who relates to the communal description of Autistic ways of being below, this investment of time may be the most valuable investment imaginable:
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
Pursuing Formal Diagnosis, or Not
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:
Unmasking Autism: Discovering the New Faces of Neurodiversity
- Do you have health insurance that covers Autism assessments?
- Can you find an Autism assessment specialist in your area who has a proven track record of working successfully with Autistic adults?
- What do you hope to get out of a formal diagnosis?
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.
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.
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
Autistic ways of being, trauma, and diagnosis | Autistic Collaboration
- to question the value of official diagnosis,
- to consider the value of Autistic peer support networks,
- and to focus on what can be achieved by co-creating healthy Autistic communities.
Diagnosis and the Pathology Paradigm
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
The Costs and Benefits of a Formal Autism Diagnosis
Diagnosis then can play a role in constructing identity and facilitating access to community and services – though not equally for everyone – while reinforcing pathology and risking diminishment.
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
In summary then, receiving an autism diagnosis can act as a permission slip, for belonging in the autistic community, for relief from judgement (by self and others), and for access to tailored services and workplace adjustments. However, an autism diagnosis is a double-edged sword and may also come with costs (Ruiz Calzada et al., 2012). For example, autistic people diagnosed in adulthood have reported their experience of being diminished in others’ eyes, especially in the workplace (Romualdez et al., 2021). Such negative experiences may be exacerbated if the thing that drove them to seek a diagnosis was some sort of crisis: mental ill-health or burnout. As a result, many autistic people choose not to disclose their identity at work, fearing negative effects (not without reason) and thus missing out on some of the potential practical benefits (Thompson-Hodgetts et al., 2020). Most strikingly, recent research reports that one-third of autistic doctors had disclosed to no one at all at work (Shaw et al., 2023). Another example of a diagnosis having the precise opposite of the desired effect occurs in mental health services which require a primary or solitary psychiatric diagnosis such that an autism diagnosis becomes an exclusion criterion for access.
Another disadvantage, not of diagnosis itself but of the hegemony of diagnosis, is that we know access is unequal. Inequities based on race, ethnicity, culture, gender, wealth, and socioeconomic class abound in the research literature (Daniels & Mandell, 2014; Duvekot et al., 2017; Hosozawa et al., 2020; Kelly et al., 2019; Ratto et al., 2016; Thomas et al., 2012). Comparisons between nations show that diagnostic rates vary widely, indicating global inequities in diagnosis as well (Samms-Vaughan et al., 2017; Zeidan et al., 2022). As a result, requiring a diagnosis as a pre-requisite for support exacerbates and reinforces existing inequalities. Even when a diagnosis is achieved, both parents of autistic children and autistic adults report an exhausting process, stretched over a long period of time and incorporating a series of gruelling steps (de Broize et al., 2022; Huang et al., 2020). Speaking from personal experience for a moment, our process of seeking a diagnosis with our daughter when she was very young involved completing a series of questionnaires and clinical interviews in which I felt compelled to emphasise only her most difficult moments, and in which there were no room to celebrate her personality or achievements, for fear of losing access to that official validation of our experiences. Analysis suggests this experience is not unique (O’Reilly, 2021).
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
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.
Unmasking Autism: Discovering the New Faces of Neurodiversity
Autistic people report increases in self-understanding and self-acceptance following diagnosis (Lilley et al., 2022; Powell & Acker, 2016).
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
Diagnosis and Community
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
Going online in the mid 90s was a game changer for me and for many other autistic people. Those of us who had a diagnosis at that time, whether it be Autism or Asperger’s syndrome, suddenly realized that we weren’t alone as we had felt, but there were thousands of others like us online, talking to each other and sharing our experiences.
We met up in chat rooms run by AOL or on IRC (the old Internet Relay Chat), or we set up websites talking about our experiences back on Geocities and similar kind of situations.
The moment somebody realises that they might be autistic is an epiphany. It’s a life-changing moment. They’ve gone through their whole lives feeling like an outsider, that they don’t understand the way the world works or why people make the decisions they do. They don’t make sense to them, and then they stumble across an online community of people who think like they do, they identify with how we see the world, they identify with the differences in our senses, in how we approach problems and how we express ourselves. They may have experienced meltdowns or shutdowns themselves. They may have been constantly pushed to the margins and told that they were weirdos, freaks, they didn’t fit in, that they were imagining things or even misdiagnosed with countless mental illnesses that the treatments they were given for actually made them worse.
I would hate to think that those self-identified people were scared away from reaching out and finding that sense of community, of support, of camaraderie because of the activities of the people I’ve been talking about. They need to feel part of something just as I did when I discovered that community back in the 90s.
There’s lots of reasons why omebody might have, at this point in time, identified as being autistic who wishes to have a diagnosis but either can’t afford it, is on a waiting list or simply can’t risk it.
As a community of like-minded people sharing the same struggles, the same ways of thinking and of approaching problems, what kind of monsters would we be to exclude those who just realised they may be one of us, from gaining the same sense of support and community that we benefit from?
What kind of cruelty would we have to express to stand like nightclub bouncers at the gates of our communities saying “No you can’t come in you don’t have a ticket.”
It would be inhuman to close the gates on those people who are self-identified.
Autism Self Diagnosis & Gatekeeping… Autism & Society: – YouTube
Invalidation
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.
I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder: A Memoir
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
…it remains an epistemic injustice at the heart of autism diagnosis, that to be autistic and thriving is conceptually impossible (Chapman & Carel, 2022).
What’s in a name? The costs and benefits of a formal autism diagnosis – Sue Fletcher-Watson, 2023
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
