In the first blog of this series from our recent “Ask us Anything” event, we discussed questions we received about language: What words to say, what not to say, questions about the medical versus social model of autism, etc.
The next major theme is based on questions we received about disclosure. Things like “How do I know if someone is autistic?” and “What do I say when someone tells me they are autistic.” Tonie and Jean-Julien shared some of their personal insights and advice:
Observe bias and stereotypes
Jean-Julien: When I was diagnosed, nobody believed it was true because they said you don’t look like you’re autistic, you look people in the eye, you talk, you’re functional, etc. It really made me realize how difficult it was for many autistic people to express what their autistic reality could be. It’s also through the variety of expressions coming from autistic people that we come to understand that a singular autistic person is unique, but we really need to break down a lot of bias by television and cinema. Unfortunately, we find many images that are just an illustration of what an autistic person can be and a generalization of what an autistic person is.
The idea is really to talk about it, to ask questions without judging, which is very difficult in 2024 to express an opinion without making a judgment. The benefit is that it encourages listening, and it’s a change because we often want to propose answers, we want to move towards a solution, and we immediately want to move towards a solution. You’re not sick when you’re autistic. It’s just a way of perceiving the world that’s perhaps a little less standard than most of the world around us. Having these conversations is an opportunity.
Personally, I always try to put a humorous spin on it by describing an autistic person. Often, people are taken aback because they really don’t know how an autistic person is, or their vision of autistic people is minimal.
So, I see it as an opportunity for an autistic person to express his or her reality, which may be different from that of another autistic person and so these complementary messages will help more autistic people to express their holistic reality in society.
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Tonie: Well, to be direct, you don’t know if someone’s autistic unless they tell you. Jean-Julien and I are two autistic who are incredibly different, and everything we do is incredibly different, even though both of us are autistic. We really can’t make assumptions.
When somebody does tell you they’re autistic, how do you respond? How do you react?
That tends to be something that can make people quite anxious and uncomfortable, especially in an employment setting. I was diagnosed about a year and a half ago, and I can say it can be complicated sharing your reality with even people in your personal life. So it’s a complicated experience that every person who’s thinking about whether I should share or whether I shouldn’t share is really going through a personal risk assessment.
They are assessing if they can be open, where they can and can’t be open and in an employment setting, that comes down to relationships that you have in your workplace. We talk a lot about psychological safety: Does someone feel safe enough to tell a manager, a colleague “Hey, I’m autistic.”
What not to say
Tonie: I can tell you a couple of things that may not be the correct or best thing to say and have certainly been said to me:
- “But you don’t look autistic.” I’m still unpacking what that means because I’m not sure what it means to look autistic but I can take some guesses.
- “Oh, I’m so sorry.” Truthfully, it was a celebration for me to be able to understand my experience, why my brain worked the way it did, and why I experienced the world the way I did. Although this response may be well-intentioned, it’s not necessarily supportive.
- “You’re so brave.” We typically wouldn’t say something like this to somebody else sharing parts of their identity. For example, if I say, ” Hi, I’m South Asian,” I don’t think the response would be, you’re so brave, or I’m so sorry.
How would you respond if somebody shared something else like that with you – another part of their identity? As Jean-Julien said, asking questions to understand is incredibly important. When we’re responding to someone sharing something quite personal and something that likely involved the risk assessment, think about that perspective and also think about it as an opportunity to really get to know someone better and understand how you can improve your own relationship and with that person.
How do you know if someone is autistic? You don’t, and you won’t unless someone tells you or you’re making assumptions, which you should probably avoid.
In our next article, Jean-Julien and Tonie will explain masking and the challenges masking can present for autistic people, especially in the workplace.
In the meantime, you can watch the full webinar on-demand here.
Are you interested in learning more about how your organization can embrace and support neurodivergent talent? Contact us and we will happily share how our hiring, coaching, and training services can help.
