You and I are not the same (Autism and self-diagnosis)

Hi, my name is Grit. I’m an autistic adult.

I received a provisional diagnosis at around five years old, before a full diagnosis by a professional educational psychologist a year later.

I developed language a little late. I had difficulty expressing myself as a child, which led to violent outbursts (that did not, for the most part, expose myself or others to a real risk of harm). I checked all the developmental milestones for what had been known as Asperger’s Syndrome (which has now potentially been rolled into High Functioning Autism).

I’m told that these days I present as more-or-less neurotypical, if a bit of an arsehole — an appearance I’ve deliberately cultivated. I’m by no means “cured”; autism isn’t a disease or condition that I have, it’s a thing that I am. It’s intrinsic to me in every sense.

Even as an adult I’ve experienced discrimination, and the harsh end of a legal system that allows institutions to define my aspects of diversity as a mental illness and to curtail my freedoms as a result.

I have some harsh truths to lay down. If you claim to be autistic and base this only on a self-diagnosis, then you and are I not the same. Your self-diagnosis is not valid.

I know this is a controversial opinion. On Twitter right now, hashtags like #selfdxisvalid and #selfdxisnotvalid are used regularly. It’s been contentious in the community for long before Twitter even came along; people have felt the need to self-diagnose because of gendered biases in diagnosis, or the temporal implications of being born “too early” to have access to professionals aware of autism as a child.

These are valid criticisms to make, not just of the diagnosis of autism, but of a whole range of conditions. There’s a real problem with the gendered diagnosis and treatment of mental conditions such as PTSD and depression, but also of physical ailments as well. All of us were born too early to benefit fully from some future medical advance or other. We should all fight for broader, more diverse, more inclusive medical and psychological services in the future.

I’m happy to see people consider themselves allies of autistic people. I welcome people to say that they identify with what they believe to be elements of the autistic experience. I encourage people to question and debate “if the diagnosis had been more prevalent when I was younger, would I have been diagnosed?” And, by all means, seek a formal diagnosis as an adult.

But I just want to say this once again:

You and I are not the same.

In no other community defined by a quasi-objective marker would we be having a debate about whether people can self-identify as part of the group. It is not controversial to say that people of solely white, European ancestry are not black. It’s not controversial to say that transwomen lack the experience of ovaries. (This is by no means the same as saying they lack the experience of being women.)

I have never met a person of any description, that upon hearing of aspects of autism — like social anxiety, sensitivity to extremes in sound or noise — didn’t pause for a moment and wonder aloud “Hmm, maybe I’m autistic?”

Very few, if any, of these people turned out to be autistic.

Why do people seek out self-diagnoses? People want to be validated. They want to take their problems, their difficulties, their feelings of anxiety, and externalise them. They want to say “these things aren’t my fault, it’s autism.”

And so people cherry pick. They identify the things in themselves that they think meet the clichés and stereotypes of autism and confirmation bias does the rest. People ignore anything that disagrees with the assumption that they’ve already made. People ignore that autism is not a pattern of behaviours, that it’s a matter of development processes and underlying neural architecture.

I’m not saying that no-one with autism has had to rely on a self-diagnosis; by the same merit, there are doubtless people without autism, misdiagnosed as having it. But with that in mind, it’s very likely that most of the people who only identify as “autistic” without being autistic have the label self-diagnosed.

But as a vulnerable community with a real experience that binds us together, and a very present problem with lack of representation, gate-keeping is a sad thing that we need to enforce in our discourse.

I’ve found before that spaces for autistic people to speak are dominated by adults with self-diagnoses. There’s an obvious reason to assume that when you don’t gate-keep to exclude people without a formal diagnosis that neurtotypical voices will dominate; simply speaking, autistic people often find it more difficult to communicate. It’s pretty much part and parcel of the condition. Neurotypical people don’t necessarily have the same limitations; their voices will often be louder. More articulate.

Whether truly autistic or not, adults with self-diagnoses bring unhelpful attitudes into the space. At a recent talk on autism I went to, a self-diagnosed autistic adult declared that happiness meant intrinsically different things for neurotypical people and autistic people. For the population at large, it meant success and aspiration. For autistic people, it meant freedom from anxiety.

And this is fucking bollocks.

Let’s take this back to the idea of positive and negative liberty; positive liberty is the freedom to direct the course of your own life. Negative liberty is freedom from interference.

Society-at-large is designed around the interests and needs of neurotypical people. Especially for the hegemonic group in society (typically white, straight, able-bodied, neurotypical men), they don’t need to worry about interference from others. Negative liberty isn’t a question; they pursue their positive liberty.

For the rest of us, we can’t begin to pursue or think about our positive liberty until our negative liberty is secured. We can’t chase our dreams when we’re subject to arbitrary interference from others.

It’s not that autistic people don’t aspire to success. It’s that we’re subject to such extreme arbitrary interference from a society that was never designed with our needs in mind that we can’t even begin to think about what success means until we have our personal security sorted.

So what does this have to do with self-diagnosis?

As I said before, people seek self-diagnosis as adults because they’re unhappy. With work, with their personal lives, romantic lives, whatever. They want to justify their unhappiness and say it’s not my fault. It’s this thing that I can’t control, it’s this autism. They reframe their entire lives retrospectively to justify what they perceive as their failures.

So when they dominate the discussion space, they reframe it entirely in terms of this negative liberty. Their personal unhappiness. What they perceive as limitations. They revise the entire discourse of autism and lower the collective expectations of success and aspiration.

Those of us who didn’t seek a diagnosis but have learned of it, lived with it, and accepted it have a different outlook.

I was always made to feel like I’d never have a successful relationship.

My wife and I celebrated our first anniversary of being married this past summer with a friends and family wedding ceremony.

I was always made to feel like I would never be able to do sport or take part in group activity.

I now powerlift on a regular basis and have just started wushu and parkour group classes.

I was always told that I could never get a job where I could feel successful and fulfilled without it being a specifically “autistic-friendly environment”.

I had a well-paid job researching and writing for a supplement in the Sunday Times where I was happy and fulfilled; I left to pursue a further degree.

My community — my people — face enough problems without people coming from outside and burdening us with their own problems that are alien to us.

As a community, we don’t need to navel gaze over being “special snowflakes”; no-one needs to self-congratulate on how “discovering” that they were autistic “freed” them from a “burden of guilt” that they weren’t “social” enough.

We need to talk about how the employment rate for autistic people is devastatingly low.

We need to talk about how the law still arbitrary restricts the freedom of autistic adults.

We need to talk about how it is still legal for some employers, such as the Armed Forces, to discriminate against those with formal diagnoses.

I’m glad to have you as an ally. But you and I are not the same.