Show Notes:

So… you’re ready to be part of the Neurodiversity Affirming movement to support an autistic and neurodivergent child in your world. Awesome, welcome in! The language you use matters. I’m kicking off this podcast series by sharing the language that you need to put in the bin, and the language to use instead.

In today’s episode, we delve into neurodiversity versus neurodivergent, why identity first language is preferred by most autistic people. We discuss getting comfortable with the term ‘autistic’ rather than ‘on the spectrum’ and why ‘high-functioning’ & ‘low-functioning’ terms should be left in the past.

Tune in for these ideas and more!

In this episode, you’ll learn:
● One person with a different type of brain from others is neurodivergent, while a group of people can be neurodiverse
● Being autistic doesn’t have to be limiting or a problem. The problems arise when an autistic person lives in a world that does not support and accommodate their needs
● Why we should drop the D (Disorder) in ASD
● It’s not a compliment to refer to an autistic person as high-functioning – this negates someone’s internal experience and only describes your opinion of how ‘normal’ they appear to you
● Referring to an autistic person as low-functioning indicates low expectations of them, and it’s an awful term.

 

Get the cheatsheet highlighting the terms that you should and shouldn’t use when talking about autism and neurodiversity: https://playlearnchat.ck.page/48f9b202e1

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Links
Podcast Link: https://pod.link/1625478932

Website: www.playlearnchat.com

Instagram: https://www.instagram.com/play.learn.chat

Facebook: https://www.facebook.com/play.learn.chat

 Transcript:

Welcome to the Exploring Neurodiversity Podcast. I’m Adina Levy from Play Learn Chat. I’m a neurodivergent speech therapist. And I’m obsessed with creating a world when neurodiversity is understood, embraced, supported, and celebrated. Join me as we have conversations about autistic, ADHD, neurodivergent experiences, and I share how you can support neurodivergent children in your world.

Let’s all work together to make change where change is needed so that the world can be a more friendly place for neurodivergent people and for everyone.

Today we’re going to talk about the language that we can use to talk about neurodiversity, autism, neurodivergent people. It is so important that we talk about language and we get the words right.

Some of this might be a bit uncomfortable. Some of the time you might need to unlearn some of the language that you might be used to using. You might even need to think about changing wording on your website or your templates, your documents or the way that you talk about your child or a [00:01:00] child in your care.

That can be uncomfortable. It’s okay and perfectly normal to feel a bit uncomfortable about this process of change. Today, I want to share some of the language that is outdated and that we need to put in the bin. And I want you to note, what do you feel a bit of friction around? Where do you think, hang on, but I use that language or I don’t really feel ready to change. I want to challenge you to challenge yourself, and I hope that I’ll be able to help you understand why the language that we use is really, really important. The better that you’re able to adapt and use the language that is inclusive, supportive, and reflects autistic and neurodivergent experience, the more you’re going to be able to support the children in your world and perhaps even yourself.

Let’s kick off with two terms that are really often misunderstood and misused. In fact, even probably a year ago I was getting them muddled up and mixed up, and it’s completely understandable. Let’s talk about the words Neurodiverse and neurodivergent. Neurodiversity talks about the range of different types of brains that [00:02:00] people have.

One person who has a different type of brain to other people is neurodivergent. A group of people who have different types of brains, different ways of thinking, perceiving, experiencing the world. That could be a group of neurodiverse people. One person can’t be Neurodiverse. You can’t have diversity within one person when you are describing that one person.

So when we talk about one person, we’re saying a neurodivergent person. And when we’re talking about a group of people with different brain types, we’re talking about neurodiverse people.

If you think about the term biodiversity, which talks about all the different plants animals and other organisms in the whole world. We’re talking about the diversity of different types. It is part of the normal range of the human existence, the human experience. PS, we all benefit from living with a diverse range of other people, existing amongst diverse people, learning from each other, having different brain types to perceive the world in different ways, to connect with the world in different ways, to have ideas in different ways.

So for starters, diversity is good, and a [00:03:00] benefit to everybody. I feel like at least in English, neurodiversity is a word that sounds really nice. It sounds pleasant. However, I think people might be really reluctant to use the term neurodivergent. Maybe that sound divergent. Maybe there’s something about the sound of the word that feels a bit harsh, something about the word diverge that might be a bit of a concern for people using that word. Now, if we think about divergence, we’re talking about different from the norm, from the average. You could say different from neurotypical or the neuro-majority. So different from the way that most people’s brains are and tick and work. Divergent doesn’t have to come with a negative.

To be divergent is also fine. There’s no judgment about it. It’s not that divergent is wrong. The whole point here we’re talking about is divergent is difference, and difference is okay. So if you feel uncomfortable with using the word neurodivergent for some reason to talk about an individual, I want you to challenge that, practice it, work [00:04:00] on it.

Now another topic that comes up quite a lot is this idea of identity first language or person first language. What that means: identity first language talks about an identity as an adjective before that noun. So for example, we would say autistic child rather than child with autism. Person first language says child or boy, girl, man, person first, and then with blah blah. Identity first language is preferred by most autistic people. So most autistic people share that they prefer, and I indeed prefer to be labeled as an autistic person.

To me, it is part of my identity. It is part of who I am, and it cannot be separated from who I am. When you use language like ‘child with autism’ or ‘person with autism’, You are sort of suggesting that they could be without autism, that it is like an addition to who they are now. The experience of many autistic people is that being autistic is through every aspect of their life.

It’s not [00:05:00] separate to any part of their life. It also doesn’t have to be a limiting factor or a negative factor. It simply is. There’s a certain pride that comes along with embracing the autistic identity. And if you can support your autistic child to understand who they are and to use that language if they learn to be comfortable and understand what it means, we can start to remove that negative stigma that many people might have unfortunately, around terms like autistic. Being autistic is not wrong, is not problematic. It’s part of the natural range of the ways that people are and exist. There are challenges that come with being autistic. Absolutely. That’s why we’re here in this podcast series and in all of my work and in the work of many other people to find ways of addressing the challenges that autistic and neurodivergent people experience through life. Now, other episodes we’ll go into what some of these challenges are and how we can support them.

However, today I just want to give you this idea, this premise that it is, okay, fine and normal to be autistic, if that is somebody’s experience. The challenges [00:06:00] arise from the interaction between being autistic or being neurodivergent in a world that is built typically for neurotypical people.

Other language that I want you to be thinking about is stopping using ASD, Autism Spectrum Disorder and so on.

Now, these are some of the official medicalised diagnostic terms, autism spectrum disorder is a hugely problematic term because of the D disorder. As we’ve already discussed, autism isn’t wrong, isn’t problematic. We need to throw that word disorder in the bin. Unfortunately, sometimes we need to use that if we are speaking to the medical world, to the diagnostic world, perhaps to NDIS or insurance providers.

However, it is simply not the preferred way of speaking about autism, and it’s not correct. The D doesn’t have to exist in autism. You do not have to experience disorder to be autistic. And in fact, my hope is that all autistic people in the world could experience life as an autistic person without feeling traumatised, without any of those barriers. It’s a [00:07:00] big goal. Another piece of language we want to be cautious about using is the term, on the spectrum. For example, many people say he’s on the spectrum or she’s on the spectrum. I feel like it is a euphemistic way and it feels a bit friendlier so that you don’t have to say the A word ‘autism’.

Remember, there is nothing wrong with autism. Let’s get comfortable with using the term ‘autistic’ rather than on the spectrum to try and avoid saying it. There’s a lot of misinformation about what the spectrum is. I think many people traditionally believed that the spectrum goes from, if you can imagine, I’m pointing sort of to the left and then to the right.

I’ve got an imaginary line in front of me. Many people believed that the spectrum talks about being anywhere from low-functioning to higher functioning, or anywhere from a little bit autistic to a lot autistic. Now we know that that is not correct. It’s really complicated. Surprise, surprise. Humans are complicated.

So what we do know is if you want to talk about a spectrum, you need to be visualising that the spectrum has many factors. Imagine it more like a circle or a spiderweb, where each little [00:08:00] prong out, up across, left, right down is talking about a different type of skill or ability and that each person will have their own constellation of skills and areas that they’re good at, that they’re not so good at, that they have challenges in, that they’re really strong in.

So spectrum, if it applies to autism to humans. It’s really complicated. It is not a linear thing. With that, we need to throw in the bin terms like high-functioning and low-functioning . Now again, they’re very medicalised. Here in Australia. We have terms like level one, level two, level three, ASD. Unfortunately, those are probably going to keep being used for a while, but that’s way too simplistic.

There’s a couple of factors. First of all, somebody might have high support needs in certain areas of their life and not have high support needs in other areas of their life and experience. So just giving a number like ‘autism level one’ is way too simple because it doesn’t capture the full experience of the support that that person needs.

Talking about somebody as ‘high-functioning’ doesn’t give you any insight into that person’s internal world. [00:09:00] high-functioning might feel like a nice thing to say, but it doesn’t help you understand how hard it is potentially for that person that you’ve labeled as high-functioning to be able to exist in their world and to, in inverted commas, look ‘normal-ish’. As we’re learning about what autism can look like in girls, women, non-binary people, and in people who appear to be in inverted commas, ‘high-functioning ‘. We are now seeing more and more people who look like they have a kind of typical life. They may have relationships, they may have kids, they may have a job, they may have a business, they may have a family.

There’s no way of knowing somebody’s internal experience and how hard it is potentially for them to be able to exist in that typical world, to hold all of those things together. So essentially the term high-functioning just talks about, how much you look like something else, how much you look like a neurotypical person.

We’ll definitely have other episodes where we talk about the idea of masking and appearing to look different than how you are. It’s a huge one to unpack, so I won’t go into depth here, but let’s just [00:10:00] leave it there for now knowing that it is not helpful to anyone really to be called high-functioning.

If you think that you’re giving somebody a compliment by talking about them as high-functioning , pause and think perhaps you’re undermining their ability to get help for the support that they need, to actually function in their world in a truly accepted, happy, and supported way. On the flip side, low-functioning is another super problematic term.

One assumption that a lot of autistic people experience, especially if they’re non-speaking, is that speech is correlated with intelligence. That is not true. Let’s just put that idea in the bin as well. Many people have language, have cognition, have cognitive abilities that are well beyond what they are able to speak with mouth words.

A low-functioning person just tells somebody we have low expectations of you, we’re not expecting you to do anything. It’s an incredibly awful term actually. I don’t really know what it describes. And in a way, similar to high-functioning, nobody is so unidimensional that we are [00:11:00] all low-functioning or all high-functioning .

There’ll be aspects of a person’s life that they are good at and aspects that they need support in. And it is going to be a mixed bag. There’s a term that is super important, which is presuming competence when it comes to anyone, and especially disabled people, neurodivergent people, especially the children that you support.

You want to presume competence. That means you assume that somebody can and will be able to do something. At some point with the right support, we do not want to be jumping to conclusions that limit somebody’s ability to achieve, to do a skill, to learn a skill.

Have you ever said something like, "he’s showing all these red flags for autism?" Whoops. What do red flags tell us? Red flags tell us. Alert. Alert, there’s a problem. Let’s just remind ourselves that autism is not a problem. Neurodiversity is not a problem. Problems come from specific challenges in life that might be exacerbated by living in a world that is not ideal for your neurotype.

If we talk about red flags, [00:12:00] we’re talking about a disaster that is coming up soon. An impending doom a huge problem. We need to be erasing that from our vocabulary. One of the best ways I can suggest that you shift that is to think about the language of traits. It’s quite a neutral term and it is perfectly fine to talk about the traits that somebody is showing.

Somebody might show autistic traits or traits of autism. And here you’re just describing what you see. No judgment, but you’re describing who somebody is, how they present, how they experience the world. And it may connect up with what an autistic person might experience and see and feel.

So the last piece of language that I want to share with you is the term verbal and non-verbal. It’s not the best description to talk about somebody who can speak with mouth words. As you’ll notice I’m using the word speech and speaking, and mouth words. I’m describing the physical production of speech, using the mouth. Preferred terms are speaking and non-speaking person, you might even use something like "a sometimes speaking person" rather than [00:13:00] verbal or non-verbal. Verbal simply talks about words, and we know that people who use AAC can have the concept of words and language. People who use a device to communicate, people who use sign language, people who write and read for communication.

There are many other ways that people have the language representation in their brain and are able to understand and produce language. So when we’re talking about somebody being non-verbal, we’re actually saying they don’t have language, they don’t have words. That’s actually not what we’re talking about here.

So please try to shift your language. This can be really tricky to shift your language to talk about speaking and non-speaking, or perhaps situationally speaking for somebody who varies in the way that they speak, you might get a bit descriptive depending on the situation, like " she can use some speech and she’s also very comfortable using her AAC device to communicate.

We’ve covered a lot here today. We’ve talked about the language of neurodiversity, neurodivergent. We’ve talked about autistic and using autistic as identity first language as the preferred [00:14:00] way for the autistic community. We’ve talked about what the spectrum is. We’ve talked about low-functioning and high-functioning, and how we want to put those terms in the bin.

We’ve talked about what red flags indicate and that we don’t want to be waving red flags around autism. We might in fact wave a rainbow flag because it can be pretty cool, colorful, bright, and sparkly to be autistic if you live in a supportive world, if you’re feeling well supported in your environment. We’ve also talked about the language of nonverbal and verbal, not being the best descriptors for speech or mouth words. I’d love to hear from you which one particular language shift you need to make this week. And have a real think, how are you going to remind yourself to make that shift?

Can you talk to a partner, to a friend, to a colleague, and tell them your intention? Explain about the language shift. Let them know about this podcast and share the episode with them and discuss together how you’re going to work on changing your language so that you are part of the neurodiversity affirming movement.

You are supporting your child or the children in your care, the children that [00:15:00] you support through affirming language, that starts to shape their experience and expectation of what it is to be autistic or neurodivergent.

I’ve got a cheat sheet on my website to help you with this language, you’ll find the link in the show notes.

Thank you so much for sharing this audio space and time with me, and thank you for being open to learning and unlearning and truly listening to the neurodivergent experience and perspective. If you found this episode helpful, please share it with a friend and join me on Instagram and Facebook. I’m @play.learn.chat

that’s Play.Learn.Chat, you’ll find all the links that we discussed in the show notes. Have a beautiful day.