The Autism Community's Relationship With Diagnostic Criteria

I've been in a bit of a weird place with the autism community recently, especially on TikTok.

Maybe some of it's just my black-and-white thinking, taking everything literally, at face value. Or maybe it's everyone else's black-and-white thinking, not seeing the nuances I see, I don't know.

I keep seeing a lot of TikToks from autistic people, pushing this idea that "you can only be autistic if you meet the diagnostic criteria", which yes, is objectively true, still makes me feel weirdly uneasy. It gives me this weird feeling deep in my gut that makes me feel like I need to argue back against this.

For one, from my perspective, they're fighting against a brick wall. I don't think i've seen many people prancing around on TikTok claiming you don't have to meet the diagnostic criteria to be autistic. Then again, those videos may exist, they're just not coming up on my feed.

But I think the main reason that seeing these arguments makes me uneasy is that somewhere inside me, there is still the spirit of an 18-year-old Robin, just starting their self-diagnosis journey, experiencing near-constant imposter syndrome, questioning everything. And I can feel the pain and self doubt these arguments cause this young Robin still residing in me.

I can't help but feel like these arguments come on very strong, and feel like they push back against anyone who's still working things out, still figuring out how to interpret the diagnostic criteria and compare it to their experience, outside of its most literal interpretation. I just know there are people out there who don't realise that they do fit this diagnostic criteria, because they're taking every section literally, but they still know deep down that they are autistic. And then they see these TikToks, and all the self-doubt and imposter syndrome comes flooding through. If this catches them at the wrong point, I can't help but feel like they could end up jumping ship completely. Giving up entirely on researching autism, accepting their fate that they're not autistic and continuing to suffer. All because they saw one TikTok that was a little too firm with their wording, as an autistic person who takes things literally.

Also, a part of me feels like there's a little leeway to be had here.

A lot of the people who make these arguments seem to hold the DSM up on some pedestal, like it's the holy scripture of the autism world, but that's just exclusionary. Not everyone uses the DSM. Here in the UK, for example, the ICD is more commonly used for autism diagnostics. The ICD is international, so more people will be diagnosed using the ICD classification of autism, than the DSM. And while the two classifications may be similar (obviously, otherwise the definition of autism really would be all muddy and confusing), they may still have differences. So what if someone fits the DSM criteria but not the ICD, or vice versa? Are they autistic or not?

Also, the current DSM is the fifth edition. Many other DSMs came before it, and the definition of Autism is different in each one. More DSMs are to come. So someone that does not fit the diagnostic criteria to a T right now, may fit a future version within the DSM. Someone who fit in the past, might not fit now. Not saying it would be a common experience, but it's possible.

So a lot of these arguments make me slightly uncomfortable with how strongly they come off. I feel like this argument shouldn't even really need to be said, but definitely doesn't need to be said with such anger and tenacity.

It feels like the autism community is changing so much these days. It used to be so inclusive to self-diagnosis and discovery, but now it feels like you're only allowed in this "autism club" if you're either diagnosed, or have done excessive amounts of research to prove you're "worthy". It just feels icky to me. We need to offer some leeway and more kindness and empathy to those still working things out. Some people may be misguided, yes, but we can redirect them with kindness, rather than shouting at them that they're wrong, that they're not autistic and they're "appropriating" our label.

I see a lot of bitterness, maybe in some ways superiority, in the community these days. And I guess it's understandable, we're constantly being used as the butt of the joke by neurotypicals, it can be hard to tell who's genuine and who's not. We get defensive. But from my perspective, I'd rather treat a troll with kindness than shout at and invalidate someone who is genuine. It's worth "looking like an idiot" to avoid the harm.

It also makes me think of this somewhat strange phenomenon that seems to have happened in some spaces like Tumblr, where people claim to be "transautistic", i.e. they're allistic but want to be autistic so they try to "transition" to autistic. It's a strange thing, and I can totally understand how it can be offensive to both transgender and autistic people alike. But...

Again, there's this little lingering voice of an 18-year-old me in there, struggling and confused, who maybe understands a little bit. Sometimes I feel like maybe these people are just misguided. They're people who are actually autistic, but they feel like they aren't because they feel like they don't fit the diagnostic criteria and so they use this label of "transautistic" to try and validate themselves as autistic. Maybe they haven't been able to find the resources that explain the diagnostic criteria in more layman's terms, in a more autism-friendly way, but they still know intrinsically that they are autistic, and then they stumble across this term "transautistic" online, and they feel like that's their best chance at being who they really are. Maybe if someone directed them in the right direction, they'd realise they don't need that strange label anymore.

Or maybe I'm just being naive. I have a tendency to want to see the good in everyone, I suppose.

I guess I just wish everyone could be a bit more accepting and learn to take a step back before they act in anger. Think of the confused, scared autistic who's just starting to discover their whole life has been a lie, that this is the one thing that explains all their struggles over the years, whose life is turning upside down and everythings changing and that change is scary and overwhelming. Approach them with care, explain things in a nuanced way. Direct them to reliable sources. Assure them that it'll all be ok in the end. That soon the change will become the norm and they'll be comfortable again.

That's what I wish I heard back then.