Hey It's Tay with Mom on the Spectrum and today I'm here to talk about the phrase "But
you don't look autistic!"
First of all I just don't like this phrase.
As an autistic person whenever I hear it, it's just frustrating!
When I started sharing my diagnosis with people and would hear that, I just didn't feel good
inside.
I feel like it's an invalidation of an autistic person's experience.
One symbol that I think works really well to describe autism is an iceberg.
You might be able to see some evidence of autism on the surface, maybe if it's like
obvious stimming or really obvious social awkwardness, but a lot of the time, and for
females on the spectrum, we learn social cues and social rules so that we don't appear socially
awkward.
And that's a whole lot of work that's done under the surface that you don't see.
I would say in my experience autism is much more of an internal way of experiencing the
world.
To me, it feels very present every second of every day.
To you, interacting with me, it probably won't.
I think one of the reasons is I received my diagnosis at age 31, so I had three decades
of experience trying to cover up some of my awkward social habits, and I created covert
ways to stim so that other people wouldn't know that I was doing it.
Whenever someone says, "but you don't look autistic" what does an autistic person even
look like?
And don't answer that because whatever follows is probably gonna be a stereotype or a generalization,
which we're learning, is not usually helpful.
When someone says, "you don't look autistic" it feels like an invalidation of their experience.
Because autism feels very real to the person that is autistic.I guess another way to look
at it would be with cars.
You don't really know what type of engine the car has until you look under the hood.
And you can see so much more about the car than when you're looking at it from outside.
I also feel like this question puts the onus on the autistic person to inform the non-autistic
person about autism.
The brunt of informing someone else about autism, I feel like should not rest on the
person with autism.
So if you are a loved one of someone who has autism, please take responsibility to do your
own research.
I think that it would be great to ask your autistic loved one if they have any resources
that have been helpful to them and start there.
But then, in this day and age it's extremely easy to find more resources related to what
you want to learn about autism.
So rather than say, "but you don't look autistic" you can ask questions.
You can say "Wow, tell me more about this."
If someone is telling you that they're autistic, it most likely means that they trust you in
some form or fashion, so I would encourage you to return the favor by asking questions
about what the experience has been like for them.
And if your'e tempted to say, "but you don't look autistic" maybe you could say something
like "Wow, I guess there's a lot about autism that I didn't know.
What are some things that have stuck out to you in your experience?"
Anything like that.
I can say as someone on the spectrum, being autistic is a lot of work.
It's constant processing, constant integrating information in a form that's socially acceptable.
It's constantly managing my mind and still being present with the people around me.
So it feels like a job every single day.
If someone is sharing with you that they're autistic, they want to be SEEN by you.
They do not want you to tell them that it's maybe not as bad as they think it is.
All that is saying is that the challenges that the autistic person faces are probably
not as bad as they think they are.
Which for me, being on the spectrum means a lot of overthinking.
By hearing that it's not as bad as I think it is, that makes me feel like I'm overthinking
even more.
Autistic people who share this news with you, they want to be seen by you, they don't want
to be questioned.
They want to be validated.
And if you don't know how to validate them, ask questions.
I had to get on my soap box for a little bit this morning because I just can't deal with
that phrase right now.
We have to do better in the mental health community of being accepting of talking about
mental health issues and diagnoses.
But I also want to say, if you have said this, it doesn't make you a bad person, it doesn't
mean you're cruel or mean or hateful or judgmental.
It just means that there's learning to do.
We all have learning to do.
So if you have used this phrase, I would encourage you, maybe if it feels right, to reach back
out to the autistic person or people in your life.
Ask them questions, ask if there's anything you can do to support them at this time, and
I want to encourage you to become an advocate, because living with autism is very challenging,
and I think it would be really really great if the burden of informing other people was
not resting solely on the autistic community, but also their loved ones.
That would make such a difference.
Let me know in the comments how you feel about this phrase, if someone has used it with you
before and how it makes you feel.
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