For the autistic ones who don’t like the word autism, or it’s history

It’s worth a mention that identifying as autistic or identifying with your child’s autism diagnosis, doesn’t mean that you have to like the word itself or the framework within which the word is given.

You can identify as autistic and also recognise that the word is steeped in patriarchal capitalism and neuro normativity.

The word autism has been around for 80 years. It was a word coined by Leo Kanner, a man who researched with an incredibly narrow lens - any peer reviews on his research wouldn’t do him any favours, in fact he wouldn’t pass the ethics committee if he was researching these days.

(But I gotta say, research on autism hasn’t gotten much better. Kanner first described autism as a neuro-developmental disorder, and people are still re hashing those same words today, even though we know hands down that it isn’t!).

Leo Kanner also coined the horrific term “refrigerator mothers”, yelling from the rooftops that it was the “cold mothers unable of loving their children properly that were the cause of this thing”. This concept sparked such interested around the world that “refrigerator mothers” was written about in academic journals and became known as the truth, without any evidence other that this guy saying so.

And we are still living in the hangover of the ‘refrigerator mothers’ trope. Helicopter mums, hands off mums, screen mums, lazy mums, highly anxious mums… ew.

The word autism needs a glow up. It was created in a slimy swamp of blame and shame and cherry picked “facts”. Coined by a psychiatrist and held hostage by the medical model that holds dominion over who it thinks is autistic and who isn’t.

It’s no wonder we don’t love it.

This week I’ve spoken to multiple people about autism, people who are starting to identify but don’t really understand what it means, what it is. And I always start these conversations with unpacking the word autism itself and that you don’t have to like or agree with the word to still identify as autistic.

“Think of neurotypes as archetypes” is a suggestion I made this week. “You can be autistic and not like the word or the industry in which the word is held”.

Many people reject the medical model, psychiatry and psychological industry and constructs that aims for us to conform enough to have jobs and pay taxes and stay demure, not make a fuss and certainly not have big emotions in public. And so the word autism doesn’t fit their frameworks or existence.

Yet not only are these people still autistic, they are probably more likely to be autistic because the very fact that they are already resisting neuro-normativity is telling!

So what to do for autistics who don’t like the word? I personally like to think that I use it for my benefit only. I’m autistic, no questions there. But if there was a better word that autism to describe my neuro-biology, I’d take that instead. It would still be the same thing, the word doesn’t matter. I mean, every word was made up by someone somewhere. All words are just made up things that got marketed really well and stuck or got ignored.

And because Kanner got his voice and his word autism heard, and it fits nicely into the colonial constructs we exist within, that one stuck.

I don’t like it, but I’ll still use it for my benefit. I use it so others better understand my nuances and needs, so that my kids get support at school, so that we can access meds that make life more liveable when they’re needed, so that my family understands us, so that we can access funding, so that I can connect more deeply with a community that also uses the same word.

In time, the word autism will get it’s makeover. Probably through influencers who finally realise that their ADHD, empathy, sensitivities and autoimmune issues are more than just ADHD, empathy, sensitivities and autoimmune issues… HA.

They will write about autism because they’re autistic and have a deep need to be seen and heard and will fixate on their content and make sure it represents their truly authentic experience. They will give autism a beautiful spin with words better than I can and aesthetics that will relate to people in a new way, and maybe as more of us relate the nuances will become clearer.

As the people become the educators, the medical model will lose its power, and this is already happening. It’s an exciting time!

So hold tight, recognise autism even if you don’t like word, use the word to benefit you and your family where you can, don’t dwell on the past and know that every person who finally realises they’re autistic gains clarity, a deeper self knowing and a way towards a nuanced and helpful blueprint for their human existence.