Welcome to the first in our series of posts highlighting the discussion from our recent “Ask us Anything” event. One of the most prominent themes emerging from our invitation to submit anonymous questions was language: What words to say, what not to say, questions about the medical versus social model of autism, etc.
We turned the question over to our experts, Tonie and Jean-Julien (edited for length and clarity):
Labels of autism
Tonie: In terms of talking about autism, I think we tend to make it more complicated than it is. I often refer to being autistic and having an autistic identity, very similar to having other identities, such as being a woman and being racialized, that it’s very much integrated into who I am as a person. It’s not necessarily a label in that sense. So, when talking about autism, I can give you the perspective of one autistic person, myself. You’ll hear me saying autistic, which I’m referring to as identity-first language, and I’m referencing my identity as an autistic person first.
That tends to be the way many autistic people identify and is generally in consensus with the broader autistic community. But of course, person-first language has a very important place not only in conversations around autism but also in the disability world in general, where person-first language, as in a person with autism or a person with a disability, can have a whole, an important space.
So, when we talk about any of these, they call them labels, experiences, or realities. In this case, it’s important to follow the lead of the autistic person. That would be my guidance. If somebody is referring to themselves as autistic, you can refer to them as autistic. If they’re referring to themselves as a person with autism or someone on the spectrum or something else, we encourage you to follow their lead.
At Auticon, our guidance is to use identity-first language, being autistic.
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Jean-Julien: I think the starting point is indeed to have this autistic label, but the challenge is that each autistic person is unique and does not apply to any other autistic person. So that’s the challenge, but at the same time, the richness this reality brings. I think the idea behind it is to go beyond the label – not to stop at just this notion, perhaps restricted by the understanding. On the contrary, there is an opportunity to take advantage of the opportunity that this affirmation of being an autistic person offers to them and others, find out how they see the world, how they function and how they feel, the challenges they face, and finally, how they can live together better, rather than just being locked into a label that is often misunderstood or little understood.
It’s often said that when you meet an autistic person, we meet one autistic person, that’s what Tonie talked about.
It’s important to remember that every autistic person has a different reality, which makes this term so rich. We realize the richness that autistic people can bring to the social ecosystem.
Medical versus Social Model of Autism
Jean-Julien: Personally, I took a medical approach when I first received my diagnosis, which came late in life. The medical diagnosis did not give me many answers. It raised many questions, and I realized that the social approach is often more interesting—a complement to a medical approach—because it’s in society that we try to function, not just through labels but through relationships.
To have this social approach seems to me a logical next step – full of possibilities and much more motivating for autistic people, too, because they don’t find themselves locked into a diagnosis, especially since a diagnosis for one person doesn’t mean the same for another. So, the social approach is the one that I favour and also resonates with Auticon Canada because our aim is really to include autistic people in a vision and not just in a medical vision that might lock people up a little.
So, it’s also essential to bear in mind that the social model means more opportunities to enable autistic people to find their points of balance, to gain autonomy, to understand the world that is different from the perceptions that most people may not have to be opposed to it or to see right or wrong. Nor can we limit ourselves to labels.
Tonie: Our background and traditional perspectives on autism or other experiences that we now talk about as being neurodivergent often come from the medical model, which is very deficit-focused. So that’s where we’re looking at diagnostic criteria to understand how we can facilitate and support this person’s transition into the social community and help them build skills. But it’s very much focused on the person and the perception that this person has deficits or challenges that require different and unique assistance.
The social model pivots away from that and aligns more with the neurodiversity paradigm, which celebrates every person in the world with a different mind. We each have a different brain, and once we can acknowledge that and celebrate it, we can leverage the strengths that ultimately come out of our incredibly diverse minds. When we talk about neurodiversity, we’re celebrating everyone for their strengths and what they bring to the table, bring to their jobs, their society, and whatever that may be for them.
But where that relates, coming back to the medical and social model is the social model, and the neurodiversity paradigm are really rejecting the deficit-based medical model that focuses so much on fitting people into criteria, fitting people into boxes.
And I, for one, only fit into a few of those boxes. As someone who was diagnosed as an adult, it certainly shifted, I think, how I view, how I view my own identity as being autistic.
I work with autistic people as well as with folks who are not autistic, and I really understand that all of us come from different perspectives, different ways of thinking, and different ways of experiencing. And that’s an incredible value that we all bring.
Being autistic is so much more than just a label. We appreciated Tonie and Jean-Julien sharing their personal experience. In our next article, we’ll explore disclosure and knowing whether someone is autistic.
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