Being human together. Showing up for what matters.


Autism Acceptance Month 2021: Being an Ally – and where well intentioned people go wrong

I read a news article recently. It wasn’t too different from many I’ve seen over recent years. It was a good news story. A four year old girl with autism had been found and returned to her parents.

A four-year-old girl “with autism.”

I wondered, did she pop it in her backpack and carry it along with her? Did she look around at the big wide world and think “oh, today I’ll take my autism out for a bit of a spin.”

Why is it important to tell me this part of her identity? What should I infer? Is it more or less important that she was found with her autism? Golly, I’m glad she didn’t lose it in her adventure.

A four-year-old girl had autism, but lost it in the desert. Devastated parents offer reward for its return.”

I’d offer that reward.

Why does it not say “A person with girliness, childhood, and autism has been found...”

She’s allowed to BE gendered. She’s allowed to BE four. Why can she not BE autistic?

Which part of her is not autistic, I wonder. Is it only her left brain, the right ventricles of her heart and maybe a little bit of her liver? I look at my gin and tonic and I think: Where does the gin stop and the tonic begin? At some point they became one, and the combination is delightful – why on earth would I want to distinguish the two? “Tonic with gin / gin with tonic“.

When I choose to declare parts of my identity, I am not a person with womanness. I’m a woman (and cisgendered at that). I’m not a person with qualifications in clinical psychology, I’m a clinical psychologist. The things I have are backaches, headaches, colds, blisters, thoughts, feelings, children and the dog.

I am not a person without autism.

Many of the autistic people who sit on my couch carry shame. They hold their identity like a closely guarded secret. Because they have been told by the world that they have autism, and to have it is a problem.

Just for the record, obviously it isn’t.

“Ableism in discrimination and social prejudice against people with disabilities and/or people who are perceived to be disabled. Ablesim characterizes people who are defined by their disabilities as inferior to the non-disabled.” Wikipedia

I can sit in a busy park or coffee shop and over hear:

  • the hushed, pitying tones of mothers discussing their friend raising “the child with autism.”
  • the well-meaning friend who says, “yes, but you wouldn’t even know your child’s autistic – they’re doing so well.”
  • the anti-vaxxers who think (even though, repeat after me, there is NO LINK between vaccines and autism) that it is better for a child to get a life threatening illness than to be autistic. What. the Actual. F……

#NoNotAllOfYou #SomeOfYou #CouldBeYou

I hear it and I fume.

Obviously the autistic population hear it too. All the Time.

The people who sit on my couch hear in the classroom the jokes about other kids “being SO autistic“. They come to see me to unpack the roller coaster of being delighted to see autism represented in a TV show, only to discover it’s been included as the gimmick, the tragic back story, the joke, the inspiration porn.

If you’ve ever said something like “Oh, you’d never guess you/they have/has autism,” I have no doubt you were (in a non-intentionally ablest way) trying to be supportive and kind. You’re a good person. I know this, because you’re taking the time to read this post. You’re compassionate, warm, thoughtful, and are probably feeling deeply sad that you have, without any intention at all, hurt someone, and contributed to the shaming and silencing of autistic people and their families.

Maybe next time, try “My awareness of autism is limited and you don’t fit my narrow stereotype. I’m so excited to know this about you.”

Like any population, autistic people are not a homogeneous collective. Autistic speaker and author Chris Bonnello surveyed 11,000 people regarding (among many things) how they describe themselves. Just over half of the respondents said they only use “autistic person“, 11% preferred “person with autism” and around a quarter were happy to use either. If you’re not sure what words to use – just ask how the person would like to identify. If it’s a young child, ask their parents. Accept that this may change with time. Read his whole article – the analysis of the data is fascinating and telling.

I seek to be an ally. But I do not need to speak for autistic people, they are quite capable of speaking for themselves. If you are interested in a broader awareness of autism, and how to be a good ally, start by reading and sharing the autistic-authored blog and books below. Search “Actually Autistic” on Facebook and find some great articles to read and pages to follow. You’ll be so glad you did.

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