A friend frets on my social media feed. “I feel like I’m probably on the spectrum,” he says. “I see a lot of myself in how people on the spectrum describe themselves, and multiple people– both professionals and random acquaintances– think it’s likely. But I don’t have an official diagnosis! Even if I know that the balance of probability is that I am, I still feel terrible calling myself autistic when it’s not actually confirmed.”
For my own part, I have two strong and conflicting emotions when I see someone struggling with this. The first, because I am a millennial memelord first and foremost, is “big mood.” And the second is always “why?
So, why not inflict the internet with my personal thoughts on the matter? None of you are powerful enough to stop me!
(In case the extremely subtle informality of my tone has escaped your notice, you may have gathered I am not an expert on these matters and these are purely personal observations. I’m not encouraging you to take my thoughts for any more than you judge they’re worth.)
First, let’s get the steaming irony off the table– I really don’t have any right to be acting as though my brain has expanded far beyond my friend’s current anxieties. He is literally me, less than six months ago.
My acceptance of my own autistic self-diagnosis is incredibly recent, and I’m still learning about myself and figuring out what finally letting myself use that label means for me. And back when I was still questioning myself, not at all long ago, I was having the exact same fears that my friend is now.
Well, plus one other fear, specific to my personal situation: I have ADHD, the symptoms of which often overlap with autism; how do I know everything about me that seems like it might be on the spectrum isn’t just my ADHD?
I’ve only moved past those fears through aggressively telling myself that no, there are good reasons to believe in my own judgment on this issue. I need to trust my own knowledge of myself. I shouldn’t be afraid to accept a label that not only fits me and my experiences, but that actually helps me to better understand and explain myself.
At the end of the day, that’s the true point of labels… more on that later.
And really, a lot of the reasons I held off for so long? They just…weren’t very good reasons, at the end of the day. Not compared to the reasons I should have accepted it sooner.
When you break down self-diagnosis of something like autism to its pros and cons, you realize that those feelings of guilt and appropriation and ‘but maybe I don’t really belong here’ are all pretty ridiculous.
But it does take some conscious effort to unpack that sort of thing, so perhaps by walking you through those fears, where they come from, and just how realistic they are (or aren’t), we can set some things to rest.
If you’ve come here wondering whether or not you can or should call yourself autistic, feeling like you need a doctor’s note to justify how you might choose to describe your experiences or what community you belong to, then I’ve been where you are, and I hope I can help you to get to where I currently am.
Because let me tell you, it feels a lot better over here.
Why Are We So Afraid Of Self-Diagnosis, Anyway?, or: Imposter Syndrome and You
Let’s shuffle the first and biggest elephant out of the room right from the start, with a little fact that anyone whose spectrum experiences have overlapped with queer experiences might recognize: usually the people who strongly identify or wish they could belong to a certain group or label have a very good reason for that.
I often hear this brought up in discussions about trans issues, where if you’re– say– a man who really wishes he could be a woman, then usually that means (joyous surprise!) you actually are a woman and you just haven’t reached that personal realization yet. Longing to be a woman simply isn’t an experience cis men generally have; it’s not something they want, and that’s precisely why they’re cis men.
And while I don’t want to draw a direct parallel here between queerness and being on the spectrum (though there’s a whole interesting discussion to be had about intersectionality between them that could be had), the logic at play here is still fairly similar: a neurotypical person is rarely going to have a lot of reasons to believe they’re neurodivergent, or to wish to be recognized as neurodivergent.
Being on the spectrum isn’t such a privileged position (I’ve yet to receive my letter jacket, but I’m watching the mail) that there are swaths of neurotypical people crowding to get in the door. If you believe you’re on the spectrum, if you wish you could describe yourself as on the spectrum… there’s probably a very good reason for that. In fact, there may be dozens or hundreds of reasons for that, which you know better than anyone else.
And that leads neatly into my next point– you may not be an expert on neurodivergence or brain function or psychology, or any branch of head science at all. (Lord knows I’m not! I literally just called it head science.) But you are the world’s foremost and only expert on you and your experiences.
Even outside the subject of neurodivergence, more and more there’s an emphasis in medical practice that the patient is an expert on themselves. There are numerous stories where doctors who assumed they knew better ignored a patient’s input, their knowledge of themselves and their situation, and it led to incredible harm.
Obviously a doctor’s knowledge and experience should be respected, but frankly, we all know that already. ‘Doctors know a lot of important things and are experts in their field’ does not exactly need a public awareness billboard campaign. The message that isn’t put out there enough is that you also need to respect your own knowledge and experience.
You know things about yourself that you may never even be able to communicate effectively to a doctor, or that someone outside your head isn’t going to be able to understand. Your input and conclusions on the subject of your neurotype are not things to be lightly discarded; they have weight. Recognize your own credibility.
This is exceptionally hard to do, because those of us on the spectrum (and those who suspect they’re on the spectrum but aren’t yet sure) have often been taught to doubt our own judgment.
We’re far too used to the experience of other people seeing the world completely differently from the way we do. Often we’re directly told that what we’ve done, said, perceived, etc, is completely different in meaning than what we thought it was, or what we intended it to be. After a lifetime of being confronted with the realization that our perceptions are only an interpretation of reality, we can’t really trust our perceptions as factual anymore.
What we think is one thing could turn out to be another– or, at least, could turn out to have multiple meanings, and not just the one obvious meaning we thought it had.
In trying to accommodate for our awareness that there are at least two very different interpretations of subjective reality – the neurotypical one we’re not familiar with, and the neurodivergent one that we are – we learn to doubt that anything we know can have one solid, absolute truth.
And that’s not actually a bad way to be! So much of the world is genuinely subjective; keeping in mind that there are multiple points of view when looking at anything can be view-broadening in some amazing ways. But I do feel like it puts us at an inherent disadvantage when it comes to trusting our own judgment, especially about ourselves. You may need to actually coach yourself to believe yourself. I know I do.
But it’s a critical skill to learn. Faith in yourself and your perceptions are important to have for your own self-esteem, but more than that– it’s impossible to stand up for yourself and your experiences if you doubt yourself too much.
You’ll end up treating other people and their experiences as though they trump your credibility at all times, and that’s just not true. It’s one thing to keep an open mind; it’s another to assume that you’re probably wrong by default. (Another issue I struggle with.)
So, we’ve concluded that you have good reason (or reasons, plural) to think you’re neurodivergent, and that it’s important to trust yourself and your own knowledge…even if it’s hard to do so. But if those arguments for permitting yourself to self-diagnose aren’t enough, then I’ve got one more to add to the pile– self-diagnosis is an important tool that should be more normalized for the neurodivergent community as a whole.
Some people simply cannot get official diagnoses, no matter how much they may want or need them, and that hardly means they should be excluded from the neurodivergent community. Gatekeepers are a foul part of just about any community you care to name.
The response to someone seeking support, Solidarity, and understanding in a community should rarely be to check their credentials at the door. Those resources aren’t so finite that we need guards at the gate. Even if we did, who could possibly be an impartial judge as to who belongs and who doesn’t? Even medical professionals can’t always come to a consensus on whether or not a person is on the spectrum.
Someone who is only probably autistic isn’t snatching resources straight from the mouth of someone clinically diagnosed with Asperger’s, just by calling themselves autistic or involving themselves with the community.
I am not harming anyone by allowing myself to use the autistic label without an official diagnosis– and neither, dear reader, will you.
We should all want people to have access to labels that will make their lives easier or more understandable, by helping to explain their experiences and find communities and support for the issues they face. And the more self-diagnosis is an acceptable form of gaining access to those resources, the more people can be helped by them.
Our communities will become bigger, more diverse, and gain more attention and understanding. Even from those outside, there will be more attention because there will be more of us, and we’ll be more visible all across the spectrum. That is not– that cannot-– be a bad thing.
[To be continued in The Diagnosis Debate, Part 2, COMING SOON]