11

"But you don't look autistic" (meaning: "you don't behave like an autistic person") is a sentence that a lot of neurotypical people (NT) say to people on the autistic spectrum (usually just after the autistic person told the NT that they are on the spectrum). However, this sentence can be painful and not nice to hear because it can implicitly convey that: "I don't believe you, you are surely wrong" (and a lot of other hidden meaning).

I know that I have heard some variation of this sentence before and I always tried to argue against the other person:

You are wrong, I have this and that, this is (partially) what allows me to say that I'm on the spectrum.

However, arguing is exhausting and I don't want to do that anymore. I want people to stop questioning me and my doctor diagnosis.

Telling someone that you are on the autistic spectrum can be hard and I would like people who have such a reaction to know that it's hurtful and they shouldn't do that (to me or anyone else).

So, how can I convey that to these people (family, friends, coworkers, etc...) without ruining my relationship with them?


Note and clarifications

  • It usually just come up once, but some people like to "put it on the carpet" again and again

  • I'm expecting the same reaction as if I told someone "I'm a lesbian" or "I'm transgender". And the reaction wouldn't be "But you don't look like one!" but just "Okay, wanna talk about it?"

  • I don't want a conversation. I just want to tell them "you, invalidating what I'm saying, is hurtful, don't do that" and be done with it.

  • To people saying "it's a compliment", to me it's not. I don't see any problem with being on the spectrum so complimenting me for not looking autistic is not something I appreciate (I don't want to debate about that).

  • Since someone asked: if you have a way to tell someone that you are on the spectrum and this doesn't spark a discussion, I'm all for it (it would be a frame-challenge but I wouldn't mind that in this context)


My worst experience with telling people I'm on the spectrum

I told most of my family via a group chat message that I was on the spectrum.

My sister read the message, didn't say anything about it to me (which was nice) but, some time later, she phoned my mom and went on and on about how she didn't trust my diagnosis.

Then my mom phoned me and told me all about what my sister said (not nice) and how she (my mom) didn't trust that I was autistic anymore and that I certainly must "just" have depression.


I also had other people doubting my words/being skeptical but it was in a "nicer" way.

  • 5
    @Noon At this point I'm a little confused about how the topic comes up at all. It's not something you want to talk about, and it doesn't sound like people are asking you if you are autistic. I have some ideas about approaching the conversation but it really depends on how the discussion starts. – DaveG Jan 21 at 19:21
  • 1
    @DaveG "Hey, by the way, I'm on the autism spectrum". Think of it like me doing my "coming out" as a person on the autism spectrum. – Ælis Jan 21 at 19:46
  • 6
    So you just tell people that you are on the autistic spectrum but don't want to start a conversation about it. Like... why do it then? – hopsinat Jan 22 at 9:11
  • 2
    @hopsinat Positively speaking, so that other people make allowances viz. OP regarding normative behavior typically expected in communicating with people. Negatively speaking, to avoid gossip, condemnation and/or undesired attention. As a personal side note, I do quite often find myself saying I am a lesbian so that guys do not expect me to be flirtatious with them or that any flirtations on their part will be a waste of time and effort. – GretchenV Jan 22 at 13:56
  • 1
    What exactly is your goal here? Do you want a way to get people to stop saying a certain phrase? Do you want a way to mention you are autistic in such a way that doesn't spark a discussion? – JAD Jan 30 at 11:18
10

TL;DR: directly jump to part 3, pal!


Disclaimer: I am autistic, I had my diagnosis at the end of 2018.
Now that being said:

Part 1: Autism can be a handicap

I know I'm gonna have some teeth-grinding here, so let me explain.
Autism is not a mental illness, nor it is a mental health issue, although it is called "autism spectrum disorder" in English, and there's a lot of associations that rather focus on the relatives' discomfort of having a child, sibling or parent that is autistic than on the well-being of autistic people.
To prove my point here, let me cite this brilliant article written by Devon Price on Medium about autism and neurotypical people's difficulty to accept autism*:

"A lot of folks want Autism — and, obviously, all Autistic people — eradicated. Autism Speaks describes Autism as an epidemic and a disorder to “cure”. The state of Colorado is considering declaration of an Autism Epidemic Emergency. Our existence is that menacing to people. We are seen as that incapable of living worthwhile lives. Like an addiction, a cancer, or a progressive, deadly disease, Autism is assumed to be a malignant thing that no person could ever want. A lot of parents, doctors, and psychologists would prefer that Autism be screened for during pregnancy, just like Down’s Syndrome, so that parents could systematically remove us from existence."

*note: The emphazed pieces represent two links to "Autism Speaks" news that I did not copied because they're now broken, as the association decided to remove those articles from their website.

This other article from Medium on the possibility of "curing autism with gut bacteria" is a good example of the stigma that remains towards autistic people and the idea that they are sick.

Autism is not a disease. No matter what some people may say about it, it's not. Just embrace this. So what makes it become a handicap, then? It is that in many countries around the world, autistic people specificities are not taken into account into how the society works.
An example: many autistic people have higher sensitivity to sounds, sights and smells. I myself am very sensitive to light and sounds. Now picture me going to the grocery store: I have to face the bright neons, the speakers continuously shouting commercials and music, people yelling at each other about which tomato sauce to buy or to not make a scene in front of everyone because "Daddy doesn't want to buy you this candy". Grocery shopping can be exhausting for many autistic people. And this is where the handicap may exist: for autistic people to evolve in a society that is not well-suited for their needs and specificities.

In Atypical, a series picturing daily scenes of a high school autistic boy, there's a scene in which his girlfriend is trying to convince the school to organize a Silent Prom. The idea is to play the music into headphones for whoever wants to enjoy the music and let those who would rather not listen to it enjoy the party without it. This is a brilliant example of accommodation to improve the inclusion of autistic people in the society. The thing is, the school and students parents strongly disapprove the idea, for "it won't be the same as a real prom for our kids who are not autistic".

The conclusion here is: autism is nothing of a disease, although the term "Autism Spectrum Disorder" is confusing. But autism can be a handicap, in the cases where the public spaces, jobs and workplaces, and society in general are thought to meet neurotypical needs and specificities only.


Part 2: The specificities of being autistic in France

For people living in France (OP and I are from the same country), they are two types of diagnosis: most of the time, a healthcare practician diagnoses autism (a psychologist, a psychiatrist or a physician, although this is quite rare), then a specialized centre called "Centre for Autistic Resources" (CAR) has to study your case and validate the diagnosis, so that you can be officially (i.e., by the country and your employer) recognized as autistic. Now, although the healthcare diagnosis is reliable and acknowledges that you have been recognized as autistic by specialists of autism, this is not enough to be recognized as an autistic person in many situations. For instance, in France you need to have that proof from the CAR that you're autistic to benefit from working accommodation, like a different job timetable, a possibility to isolate yourself, or even the right to wear headphones while at the office to reduce the surrounding noise (some French companies forbid to their employees to wear headphones at work).

The issue with that double diagnosis is that, upon the few people that are a bit aware of autism, most of them do not believe you until you get that proof from the CAR. And it takes no less than three years to even get an appointment at one of those centers. So most of the time, you get a diagnosis from a healthcare practician, "yay, congrats, you're autistic", but you don't get any help to improve your inclusion into society. In Europe, in 2014, 76% to 90% of autistic people were unemployed (English reference here). I cannot find the numbers for France but last time I saw them, it was above 90%. In France, many autistic people are even forced to exile themselves in more clement countries, like Belgium.
All of this to say:

it's difficult being autistic in France, as there is a real stigma against autism and most people know almost nothing about it.


Part 3: How to answer to people who do not believe you

Regarding all the information given above, it sounds obvious that you want to be careful on how to talk about your autism to people, whether you're close to them or not.

The next time someone tells you "but you don't look autistic!", I suggest you answer something along the lines of:

That's funny you know, there's a saying in the autistic community: "if you met someone autistic, you just met one person with autism". There's as many forms of autism as autistic people. My specificities are unique, some of them may be visible, some may be not.

This is a friendly reminder that the manifestation of your autism may not be as obvious as they would think, and it implies that you do not want to have to justify yourself. I think that at least in the first place, it's important to remain neutral in your tone and not convey they hurt you because as many answers already suggested, I believe that most of the time, when people say "I can't believe you're autistic" they don't mean harm, they just have very little knowledge of autism. If they insist, you can invite them to learn about it:

As I said, autistic people are all different. If you want to know more about it, there's a lot of articles and websites depicting some of the most common specificities. [I could send you some of them, if you want].

This reinforces the fact that you don't want to explain makes you an autistic person. By then, they should have understand that you don't want to talk about it. Add the last sentence if you feel that you're close enough to your interlocutor and that they may be interested about it.


Part 4: Keeping up

Now some advice from a gal who came out in front of all her colleagues in the middle of a fight on whether we should rearrange our offices to build an open space:

  • Keep in mind that most of the time, the people asking do not mean harm. They just don't know a lot about autism. It will help people answering their questions. If you feel overwhelmed by their questions, invite them to learn more about autism online. Give them a few links if you feel that they would definitely read what you send them.
  • Don't feel bad for who you are. You're not more or less, you're just different.
  • Get closer to people on the spectrum, join online discussion groups, share your tips and troubles with them. It will also make you feel understood and loved for who you are.
  • A tricky one: do not come out when unnecessary, yet do not try to hide your autism. "What the heck are you saying, Ava?" I'm saying that the word "autism" comes with a lot of prejudices. I think that the issue people have is not with the way you are or behave. It's with the word "autism" itself. It's exhausting having to justify yourself about your diagnosis. But it's also exhausting trying to hide who you are and how you behave. Before discovering that I'm autistic, I've been labeled as "weird". I was the weird girl, the kind, generous, funny, but weird girl. If you're fine with that label, I think it's better than to be thought of as "the person who tries to come up with a """disease""" just because she's weird". It may be a coward move (not disclosing your autism), I agree, and I don't know about you, but I don't have the strength to advocate for autism awareness to everyone I know. Instead, I anonymously write post blogs about autism.

You're doing a great job so, keep going!

27

I think what you are taking as somewhat rude and insulting, is generally not meant that way. It is definitely a misguided thing to say, however. I am NT myself, more or less, and I agree with your opinion that it's invalidating and rude, but I believe that people usually say that another person doesn't "look" autistic because they don't know how to respond to discovering that they are on the spectrum. (The need to say SOMETHING even when you have nothing productive to say is a very common foible of NT people, I think.)

It's likely that people you are casually talking to don't actually think you are lying or wrong. In this case, "You don't look autistic" means very much the same as "I am surprised to learn that you are autistic," with a touch of "you don't fit what I imagine an autistic person is like". It can come from a pretty prejudiced mindset, or just from a thoughtless "I need to respond with something" kind of place.

You probably can't stop people from responding to you with this phrase, but you have some good options that allow you to respond without being rude, while letting them know that their assumptions are inappropriate and not appreciated. I don't think you need to justify yourself by talking about your diagnoses unless that is what you really want to do. That topic is fairly personal, and others aren't 'owed' that level of detail about your life.

Something like, "Autistic people look very much the same as anyone else" or "Autistic people don't all present the same way" is informative and just a bit dismissive of their assumptions, without being actually rude. If you want to take it up a notch, "I guess you don't know many autistic people, then" is just a bit more confrontational.

16

First, understand that interpreting their answer as "I don't think you're autistic, I don't believe you, you need to convince me" is not a helpful interpretation. You don't need to prove anything or convince anyone even if they were asking you to, and they're generally not asking you to.

They think it's a compliment. I've been told "you don't look like you have a PhD" and quite a few other things I don't look like. Generally it's said with a big smile, like being what you are is an insult but you somehow manage to appear that you don't qualify for the insult. In many cases people go on to list the negative stereotypes they have about what I am, and expect me to stand there smiling and thank them. You have two choices: you can accept their "compliment" in the way they intended, and leave their prejudices unchallenged, or you can educate them. Of course there's a bit of a spectrum, and you can choose from a variety of responses. Consider:

  • thanks! I've worked hard on that
  • thanks, I guess.
  • actually, this is what autistic looks like (cf Gloria Steinem and 40)
  • I'd love to hear why you think that
  • that's not a compliment, you know
  • oh please do tell me more about my condition and how awful it usually makes people like me look [angry glare]

None of these particularly invite a conversation. All but the first are likely to lessen the chances of the person doing it again. The last one is quite argumentative. To be clear, it is not actually inviting more stereotypes from the other person; it is sarcastically pointing out how insanely rude their "compliment" is. I would expect it to elicit a reply of an embarrassed "sorry" or just silence while someone deals with their worldview shifting,

10

Being autistic myself, I take it as a compliment, as I have literally put in decades of work trying to make my affect match my feelings, maintain eye contact, and not walk with a stiff gait.

I have also worked closely with my daughter to help ensure that she doesn't look autistic either.

If someone says this to me, I see it as an opportunity to educate the person, explain to them that not everyone fits the mold, and more importantly, to give hope to people who have autistic family members or friends with autism and show them that there is plenty of room for improvement, and that help is out there.

Remember, people are going to say odd things when they are unfamiliar with something, and while there has been some increased exposure to autism, very few people understand it.

It's not insulting at all, IMO.

What you can say to family and friends is to thank them, but explain to them that we don't all fit into a nice neat package. Don't take it as an insult, but as an opportunity

6

I find that when people say things that are insensitive or rude without meaning to, a good way to get them to question the assumptions that lead them to say the thing is to ask: "How so?".

This will force them to think and try to express their prejudices, and most of the time well-meaning people will understand how stupid those assumptions were when they try to explain themselves. I hear people start with a justification and then not complete the sentence, as they realise how silly their idea was.

If they dig themselves deeper, by reinforcing that they think all autistic people do 'X', then you can respond with a simple "well, now you know that's not true" and then change the topic. Starting a long argument is, as you have noticed, pointless. You can't make people see reason if they don't want to, but at least you might have planted a seed that eventually makes them realise how silly their prejudices are.

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