*This article was written by an autistic Kooth writer and discusses negative attitudes surrounding autism that may be triggering for some readers.

I’ve been diagnosed as autistic for about four years now, and I’ve had to learn how to respond to lots of different negative comments and attitudes about my autism.

Often those comments don’t come from a bad place, those people just haven’t been educated on autism tonnes, but that doesn’t mean it’s not still frustrating. In this article, we’re going to look at the most common unhelpful things that people might say – I’ll tell you how I’ve responded to those kinds of remarks before and then you can think about how you might want to respond to each one in the best way for you. (If you want to respond, that is – sometimes no response at all might be the best option.)

But you don’t look autistic?

Ah, this old classic. I’ve heard this one many times. People find out that I’m autistic, they frown, and then they hit me with this line. I do understand where this comment comes from. I don’t look like the stereotypical autistic person that they have in mind. But that’s the thing – that is just a stereotype. Sure, lots of autistic people do fit that description but autism is called a spectrum for a reason. There are as many different versions of autism as there are autistic people. You can’t ‘look autistic’, just like other people can’t ‘look allistic’. (Allistic = another word for ‘not-autistic’.) My favourite response to this one is to feign innocence and ask, ‘Oh. What does an autistic person look like, then?’ This usually makes the speaker realise their mistake (or at least realise that you’re not the audience for comments like that).

You’re a person with autism, not an autistic person

This is maybe the one I’ve heard the most. A surprising number of people have tried to correct me when I referred to myself as an autistic person and say that I should call myself a ‘person with autism’ instead.

Every autistic person has a different preference. Some people do prefer to be referred to with person-first language (person with autism) and that’s completely fine and should be respected, but identity-first language (autistic person) has definitely become the more popular option in recent years. It comes down to this: if you have chosen to refer to yourself a certain way (with autism or anything else) then people should respect that.

We say ‘person with…’ for negative things, almost exclusively. You would NEVER say, ‘a cancerous person,’ you would say ‘a person with cancer,’ because cancer is an illness, it is something that a person has, rather than something that they are. Autism, however, is not an illness. It’s a neurotype – a slightly differently structured brain.

I’ve had people try to explain their reasoning to me and say that I shouldn’t say ‘autistic person’ because it’s not something that defines me. But to that, I’ve always said, ‘Why shouldn’t it?’ It’s true that it doesn’t, necessarily – I’m a complete person made up of so many different parts, but that complete person is autistic, and I don’t feel the need to shove that to one side.

It’s up to you how you respond to this. You can either try and explain that you view autism as part of you, and you prefer identity-first language for that reason. Or, you can choose not to engage further and set a very clear boundary. Tell that person that you would appreciate it if they wouldn’t try to ‘correct’ the language you use to refer to yourself. It’s all personal preference, and this is yours.

But you must be a high-functioning autistic person, right?

People previously used labels like high or low functioning to describe different autistic people, but we’re moving away from that language now because people (generally) understand that it’s nowhere near as simple as that. Plus, it’s never nice to refer to anyone as ‘low functioning’. Sure, some people might need more support than others, but that doesn’t mean they don’t have their own unique strengths or that they don’t deserve respect.

I’ve had the above comment a few times, and again, I do understand what they mean – I don’t make sense with the version of autism they have in their head. They’re not trying to be ignorant. But that doesn’t mean it’s not still frustrating.

I’m very lucky. I’m employed, I’m in a long-term relationship, I do lots of fun things. But none of that means I’m not autistic or that I don’t ever struggle with anything. When I’m really overwhelmed I can go non-verbal for stretches of time, I’m not great at regulating my emotions, I get anxious, I struggle a lot with change, and I have lots of different sensory needs. All of these are probably things that the speaker would associate with being ‘low functioning.’ But they don’t see any of those things because they’re only judging me based on the person they’re seeing in that moment (a person who is probably masking too).

If you do want to reply to this, then maybe let them know that we don’t use those labels anymore because we’ve learned that things just aren’t as simple as that. Or, just set that boundary again and get right out of there. ‘I’m not comfortable with this discussion because it feels dismissive of my struggles and also like it doesn’t give other autistic people the credit they deserve, and I’d like to end it here.’ Or simply, ‘I’m not interested in continuing this discussion further.’ You don’t owe anyone conversation or justification of any kind, especially not if it’s having a negative impact on you.

Did your parents vaccinate you?

Vaccines don’t cause autism. We know this. The only reason people believed this is because one scientist, over twenty years ago, published a paper saying that the vaccine against mumps and measles had caused cases of autism. The paper was retracted and the doctor that wrote it had his license taken away for making false claims. But the idea caught on, and some people still think that vaccines can cause autism today.

Conspiracy theories like this almost always come from a place of fear and a need for control. The world is often a scary place, and it’s understandable that sometimes people feel the need to find control wherever they can, even if, unfortunately, it’s in the clinging on to ideas that are just not true.

But what’s also understandable is that you need to disengage from that kind of nonsense. You don’t owe anyone a list of facts (though again, you can give them to them if you want to and don’t think it’ll negatively impact your mental wellbeing). You can choose to shut that conversation straight down. If your parents did vaccinate you then they did it because they care about you and want you to be protected from illness. That has literally nothing to do with your autism. And besides, your medical history is no one’s business but yours.

Oh, I’m sorry.

I’m going to skip straight to the responses to this one. The simplest one:

‘Why? I’m not.’ Or just a tilt of the head and a: ‘What for?’

The beauty of those responses is that they make it very clear how you feel and let them know very simply that you don’t view being autistic as a tragedy and neither should they.

Again, not everyone – or even most people – will have bad intentions when they say things like the above – they probably are just uneducated on autism and don’t realise that their words might have a negative effect on you. But that doesn’t detract from the fact that it can still be really exhausting and taxing on your mental health to have to deal with things like this. Once again, you do not have to respond to anyone if it doesn’t feel safe or appropriate to do so. It’s completely okay for you to switch off to this, ask someone who’s with you to respond on your behalf, and it’s always important to remember to practice self-care and be gentle with yourself. You know who you are, you know the facts, and there are lots of people out there that do understand. And remember to try not to beat yourself up if you reflect and wish you could have responded differently, either if you think of an excellent shutdown when it’s too late, or if you now wish you hadn’t said anything at all. You did the best you could in a difficult situation and you should give yourself credit for that regardless of how it all went down.

Hopefully, this has been helpful, either if you’re an autistic person yourself, or if you care about someone who is and want to understand how best to combat these views.