Autism:

Short answer: Yes. Gatekeeping has become a normalized part of any community, but often it’s those people who don’t identify with a label who are so concerned with the ‘rules’ about who can and cannot use it. This is a reflection of our need to sort everyone into definitive categories, and the internalized stigma that we associate with words like Autism. When we subconsciously associate a word with a negative image of a person we tend to be resistant to its wide-spread use. However, if we think about Autism as something that needs to be accommodated, then we interpret its function as a demand for that accommodation. Demanding accommodation is something everyone has a right to do. And, if we can acknowledge that Autism can also just be a name for an experience or characteristic, then our reaction becomes less about the rules and more about the story. It’s the difference between trying to understand what a person is asking from us, and just trying to understand a person. 

I’ve identified with the Autistic label now only a few months, and I’m still learning so much about the community. But I’ve picked up on some things about it that, even if they aren’t universally true, are important enough to be affirmed here. Like how most people on the spectrum do consider their Autism to be something of a gift, one that they wouldn’t change about themselves even if they could. And that the people in the ASD community aren’t so concerned with who should or shouldn’t be allowed in: we welcome everyone. Even if you’re just an ally, or a different kind of neuro-divergent, or a neuro-typical with some neuro-divergent traits. Even if you once thought you were Autistic then changed your mind. Your narrative is still valid and you are still welcome. The point of the ASD community isn’t to separate us from everyone else; That would be pretty counter-productive. It’s to create a space that is safe for exploration and expression - particularly the kind that doesn’t meld comfortably with regular neuro-typical society. You don’t have to earn a seat at the table, there are cushions on the floor.. You know, because a lot of neuro-divergents like that kind of thing.

Diagnosis

I have similar conversations with my clients whenever a new label enters our sessions: Autism, Borderline, ADHD, even Anxiety and Depression. These capitalized diagnoses have such an official and permanent feel to them that it’s almost always overwhelming to use them for the first time. But nothing is categorical. As my good friend Maria Fakhouri (MA, RP) says, ‘everything is a spectrum, and we’re all on every spectrum’. These diagnoses are supposed to describe a set of symptoms and give us a language for talking about things that rarely get spoken about. But then shame culture happened, and identity politics happened in response to that. And now words like these can feel like signing a contract before reading the fine print.

But you don’t have to let this language define large parts of you. In fact, I find that the more we use language like this, the less important it feels. You can, of course, allow a word to be highly significant: Right now I probably think about Autism ten times a day, that’s a normal part of getting comfortable with a new language. But, I used to think about anxiety and ADHD like that, too. And now I don’t. My point is, it’s all good. And it’s all up to you. 

The DSM-5 looks for characteristics like: deficits in social communication and social interaction and repetitive patterns of behavior or interests when diagnosing autism. Originally I was going to go into more detail about this, but after spending some time reading through the DSM-5, Zimmerman’s Interview Guide for Evaluating DSM-5 Psychiatric Disorders and Morrison’s DSM-5 Made Easy – the only take away I have is that assessment is in need of an update. These measures are still written from a medical-model perspective (treating mental illness as something that needs to be and can be cured) rather than a one that acknowledges society’s role and neuro-diversity’s benefits. (Psychologist Devon Price has a lot of good things to say about that.) So if you are looking for an assessment then perhaps be prepared for a flawed or out-of-date system. And remember that despite how much authority we give these measurements, they are still far from perfect.

I also want to acknowledge that the process of getting diagnosed can be far from easy. First off, it’s expensive. Often more expensive than people on the spectrum can afford, as being Autistic in a neuro-typical society can impact employment, income, and support resources. Secondly, lots of psychologists and psychometrists are still catching up with recent research and new ways of thinking about Autism, which means there’s a chance the official diagnosis will be disappointing rather than affirming if you really needed it to go a certain way. (I’m a believer that the client always knows best, but this isn’t always an easy thing for people to put into practice.) Diagnoses are also time consuming and vulnerable in a way that might convince you not to pursue one at all. Acknowledging all these issues, it may not make sense to rely completely on this process to tell you how to identify. The beauty of today’s culture is that you can find quizzes and information online (check out Embrace Autism, a fantastic online resource for people on the spectrum) and on social media that now does that majority of the work psychologists used to do. Can these sources be less reliable? Considering how much our concepts of mental illness and disability have been changing lately - sometimes, sometimes not. As long as you’re thinking critically about what you find, and prioritizing yourself, you should be okay.

Stereotyping

One of the reasons why it’s so easy to feel like we shouldn’t be using the Autism label is because we are still distracted by what we think Autism should look like. And therefore, all the ways we don't seem Autistic - even to ourselves. Even when we’re arguing the very opposite with other people. 

Autistic stereotyping has been a thing literally since the invention of the word. As Devon Price outlines in his book Unmasking Autism (which I highly recommend) the initial research which led to the formation of the Autism diagnosis was conducted in a way that purposefully left out women, people of color, and families in the lower classes. That’s why our first thought when we hear Autism is still Sheldon Cooper being anti-social, uber-smart, and obsessed with trains. I can sit and think about all the things that make my Autism obvious to me (my discomfort of social events, my confusion about social scripts, my hyper-analytical, hyper-logical thinking, my determination to do everything a little bit differently than most other people) but there’s still a part of me that can’t help but think about all the Autistic traits I don’t have (a.k.a. Sheldon-Cooper-Syndrome). 

While stereotyping plays an important part psychologically (we need to be able to automatically predict what people are going to do or else we could hardly get through a day without exhausting ourselves trying to come up with, and prepare for, all the possibilities), we each have a responsibility to challenge it when it stops working. And it never did its job well with this. If we trust in stereotyping too much we fail to recognize Autistic experiences when they happen, or force Autistic people into boxes. So not only is it your job to allow yourself to gracefully use the word Autistic if you want or need to, but doing so actually plays a pretty radical part in forcing those around you to evolve, too. That’s the first step of Radical Visibility (if you want to learn more about that, check out this Zine by  Rebirth Garments).

Conclusion

In conclusion: trust your instincts. Don’t put yourself in a box, you can always change your mind later (and anyone who says otherwise doesn’t have your best interests at heart). Consider, first and foremost, what’s going to be the most helpful and validating to you. And if you decide to start using a label simply because it’s the best thing you’ve got at the moment, and not because it feels like a perfect fit, then that’s totally valid, too. It isn’t fair for other people to fault you when you’re just doing your best to understand something complicated and inexpressible. At the end of the day, self-diagnosis is valid, and you’re in charge of telling your own story.