"That's literally not in the DSM": The problem with autism self-advocacy

The autism self-advocacy paradox

During the summer of 2020, I was locked away in my studio flat, processing the collective grief over George Floyd's murder and navigating the noise of white people scrambling to prove they weren’t racist. I was tapped into autism Twitter, where the noise was present as well, and that’s where I first encountered the phrase “strong sense of justice.” Swathes of white autistics were quick to claim they couldn’t be racist because they’re autistic and possess a "strong sense of justice." But from the exchanges I’d seen and experienced, I knew that wasn’t true.

This feeling, communicated as an autism fact made me realise that self advocacy is flawed and our creation of community specific terms creates a questionable disconnect from established medical frameworks like the DSM.

@highs.and.losThere's so much value in sharing our lived experience, but it feels important for me to remind folks to ALSO check in with those primary sources !! Being #autistic might mean that you are more likely to adhere to your own morals with rigidity, but having a strong sense of justice IS NOT an indication of autism. (a square is a rectangle but a rectangle is not always a square, you know?) It's possible to be autistic & not have your rigid thinking centered around your morals. Furthermore, autistic folks don't have a common definition of "justice" :) #actuallyautistic #senseofjustice #audhd #nd #asd #dsm #blackandwhitethinking #allornothing #autismawareness

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I’m not separating myself from the culprits, I love to throw around a terms ‘hyperfocus’ and ‘masking’ just like everyone else but there comes a point we have to ask - is this reinterpretation helpful or is your neurospicy brains just looking for validation? (or advocates creators trying to make viral content)

The rise of autistic self advocacy

Finally, autistic people are sharing their own experiences. For years, the only information about autism came from a medical lens, which made it clinical, confusing, and biased. As individuals learn more about themselves and how autism manifests for them, lived experience content captures the shared experiences often overlooked by diagnostic frameworks like the DSM-5. They’re able to create new terms that capture the reality of living as an autistic person in a todays neurotypical world.

But these terms aren’t in the DSM, they describe internal experiences that might not align neatly with medical definitions. Meaning they’re open to interpretation whilst thats actually part of their beauty, its easy to see how that also means the common understanding of them could transform and diverge from its clinical source.

The Disconnect from the DSM

The DSM isn’t perfect, but it’s what we have for now. Its many limitations leave autistic people with a lot of questions, even after diagnosis. There are many shared experiences it doesn’t cover. For example, autistic burnout — it’s not even mentioned in the DSM. So, does that mean it’s not real? From under my weighted blanket, in a dark room with noise-cancelling headphones on after a "normal" day of work, I’m going to say, yeah, it’s real. But despite the fact that burnout seems like a universal autistic experience, from the pressure of trying to survive and meet neurotypical expectations, sharing that with a clinician technically wouldn’t count towards getting a diagnosis.

Introducing: The Autism Self Advocacy Paradox

Saying the DSM isn’t perfect is an understatement, same with the autism assessment questions, they both fail to capture the diversity of the autistic experience. Anyone with a brain could be autistic, yet they still are skewed to identify it in middle class white brains. That’s why so many of us say self-diagnosis is valid right, that at the fact waiting lists are long and going private is so spenny, but the gap between relatable self advocacy terms and the DSM leaves room for misinformation.

So the increase in self advocacy has added a richness to the autistic experience, decoded and recoded the DSM for life today but its introduces the paradox: while self-advocacy strengthens awareness, it can sometimes diverge from medically established diagnostic frameworks like the DSM. This creates a tension between personal narratives and clinical definitions.

Language defining identity

Language is a powerful tool in shaping identity and creating community, something so many isolated autistics crave. After years of being on the outside of society upon realising you’re autistic you start to work your way into a community - learning its language is part of that.

As a black autistics we’re in the minority working our way into, another, white dominated space so the new language has been created for us, not by us. Interpretations of the DSM, for us, are as void of cultural nuance and the handbook itself. So what happens when your version of autistic burnout could never include a messy room or emotional outburst because adhering to societies demands and expectations for POC is deeply ingrained in you? Does that mean you don’t experience autistic burnout, does that mean that you’re not autistic?

Filling the Void

We don’t need to stop sharing our experiences but we do need discernment. Not everything shared online needs to be medical fact - if we didn’t relate to these experiences the terminology wouldn’t be as catchy as it is and the research into them wouldn’t be happening. But what we need more of is, research to validate our experiences, research into how it manifests across intersecting identities and then to integrate these insights into the DSM.

We all want the same thing, a DSM thats truely reflective of what autism is and to be accurately diagnosed. So whilst the DSM doesn’t capture the whole picture of autistic experience we’re left to make it make sense ourselves through self advocacy, and our conclusions may be well intentioned but misleading.

How can we support autistic voices while staying true to accurate, evidence-based understanding?