What not to say if someone reveals that they are autistic to you

For decades I have been mindful that so much of what I hear and read about autism and autistic adults appears to me to be misinformed, misplaced, misleading – to the point, at times, to be damaging. It is essential that society understands autism in order to better understand autistic adults, and to reduce risk of the immense harm to them that is occasionally (too often) apparent.

In the three Chapters of the book I have tried to write for an autistic adult audience – the autistic adult is the centre of the narrative, rather than being 'written about' and within the text I aim to deconstruct many of the mythical 'truths' about autism in order for individuals (autistic or not) to work towards a more positive existence for the autistic population.

In this extract from the book, I look at what not to say if someone reveals that they are autistic to you.

You don't look autistic

Ok, now I know that most people would recognize this for the nonsense that it clearly is – well, I'd hope so, anyway – but it's still worth including such is the impact it might have. The very notion that an autistic person can be recognized as autistic by the way they present in some way is bad enough. To be told – often by people who barely know you – that you can't be the very autistic person you are – based on a premise that you must look a certain way that doesn't fit with whatever image this person has in their head can be difficult to digest. After all, what does autism look like? What is autism supposed to look like?

How can there ever be a justifiable notion that autism can be seen in some manner which is what the retort suggests?

But you're nothing like [insert ludicrous term]

By ludicrous term, I mean any term that is included here. Being compared to any other person, whoever they are, is ludicrous. Furthermore, being questioned over your own authenticity as a result of not being similar to another autistic person discredits you as a human being. It is so ridiculous as to almost – but not quite – be laughable. It isn't laughable, though, as it is simply just so offensive – not just on a personal, 'why should I be like …' level, but perhaps more importantly at the accompanying dismay that others still have this level of ignorance over who you actually are.

Everyone is a bit autistic

This is one which I really do hope stems from a sense of caring, but it still stings. If you are someone for whom your autistic identity is an important aspect of who you are – and for some of you it will be the most important aspect of who you are – being told (falsely) that everyone shares that identity to some degree totally trashes your own identity and makes a mockery of your declaration. To some degree it is essentially dehuman- izing. Many individuals I know will refer to comments like this as incredibly patronizing and belittling, devaluing the autistic experience by suggesting that everyone shares it. They don't.

But you don't stim

This is an interesting one because at least it demonstrates that whoever has said it has some understanding of stimming – but they clearly don't have an in depth understanding of stimming, or how dangerous such a throwaway comment can be. Firstly, not all autistic people will stim. Secondly, not all stimming is visible. Thirdly – and, possibly most obviously, how does that person know that you don't stim? Taken in turn it becomes clear just how astonishing comments like these really are. There is no such thing as a behaviour (in this case stimming) that is either exclusive to autistic individuals or universal amongst them. Therefore, any reference to being autistic or not in the context of behaviour essentially becomes redundant. There are also plenty of people who stim mentally rather than physically, in which case it's impossible to see. And, lastly, but possibly the most profoundly extraordinary point – why is it that some people genuinely believe that they have prior knowledge that they can make judgements on? How do they know you don't stim? Are they secretly watching you when you're unaware of it? Obviously (I hope) the answer is 'no' so what gives them the right to simply decide for themselves what they know and what they don't?

You're just saying it for effect

I'm not at all clear on what people mean by this, but it ties to some degree with the comment I often hear in relation to self-identification – that everyone will start declaring that they are autistic. I have yet to hear a convincing argument as to why people would declare they are autistic for some kind of effect, particularly if they are not autistic in the first place. Don't get me wrong – I do hear plenty of arguments, just none that is convincing. The idea that you are saying it to get some kind

of attention is ironic indeed, as much of the attention autistic people do get leads directly to them feeling unsafe. Then there is the idea that you will get some level of favourable treatment by declaring that you are autistic – firstly, just ask any autistic adult as to whether it's easy to get reasonable adjustments made and whether they feel that they benefit from being autistic and see where that gets you; secondly, what genuine reasons are there to make believe that you are autistic? Perhaps there are some out there who go down this route, but surely they are so few and far between as to make it extremely unlikely; thirdly, perhaps if there is an intended effect – for example, to please take being autistic into account and understand the impact it might have on me – it needs to be taken extremely seriously, as opposed to discarded from the outset. Being autistic to most people is extremely important – it should be taken with the importance it deserves, and the individual treated with the respect they deserve, rather than summarily being dismissed out of hand.

Autism is just a label

No – autism is an authentic, important and, for many, critical identity. It is not 'simply' a label. Far too many of you will have been told that there is no point in gaining an autism identifi- cation because it's 'just a label' and 'what difference does it make anyway?' – this is to undermine your very way of autistic being and detracts from just how important an autism identifi- cation can be to you.

Autism is just a social construct

This is just one tiny nudge away from suggesting that autism doesn't exist, which is one of the most gaslighting comments that can exist. To infer that autism doesn't really exist, and that autism only came about when academics and/or clinicians decided to 'invent' it, simply doesn't help when it comes to being autistic. Being autistic may well be one of the defining things about you – not all folk will find their autistic identity particularly important, but when it is important it tends to

be very important indeed – in which case the inference that it (autism) and therefore you (autistic person) are a social construct is manifestly disturbing and insulting. The term autism and all that goes with it are, of course, social constructs – social constructs being ideas (in this case a specific term) that have been accepted by society. But you are not an idea – you are an autistic person! Before autism was explored as a notion autistic people still existed. There is a difference between a social construct and a human being, and don't ever let anyone tell you any different.

You must only be very mild

This goes back to the whole notion of grading of autism which is discussed in section 2.1; however, the gaslighting component of this is that others saying that you must only be mild are totally undermining the negative experiences that you might have, not as a result of being autistic per se, but being autistic within an environment that doesn't suit your needs. It might be that the impact of autism within a non-autism-friendly environment can be extremely severe – one only has to read the statistics regarding poor life outcomes, suicide, and mental health issues to realize that the impact of a mismatch between you and the environment can be extreme. Thus, if others essentially dismiss your experiences as only mild, it can be a proverbial kick in the teeth at the very least. Being brushed off as if your traumas are to be discounted as barely negligible can, ironically enough, just make those very experiences even worse. While we are on the subject, I am frequently astonished as to how people come to these conclusions anyway. How does anyone know what anyone else is experiencing without some level of communication? Why would anyone make assumptions about your experience without engaging with you? However, even though people making these sorts of assumptions is bad, what is even worse is when individuals open up to explain that things are not in the slightest bit mild and they are still in a position whereby they feel others are either not listening to them or not taking them seriously. That is when the realms of gaslighting become even more dangerous.

There are other comments that might be made, not necessarily specific to disclosure, that I would include under the gaslighting banner. The following are just some of those examples:

You won't be able to do/achieve xxx if you're autistic

Why would being autistic prohibit you from doing anything – other than continue to be autistic? This notion that being autistic somehow automatically tells anyone anything at all – aside from the fact that you are autistic – makes absolutely no sense. To put it more plainly, being autistic means that you are autistic. It cannot definitively mean that your pathway is subse- quently somehow determined in some way. Being told that being autistic means that you shouldn't expect to be able to work, or have a relationship, or be a success – or whatever – is discriminatory and plain wrong.

You shouldn't worry about that

If you have concerns, worries, anxieties over something and make the (sometimes considerable) effort to open up to a trusted person that you are struggling, only to be told that you shouldn't worry, can be devastating. I suspect and hope that what the person really means is that they wish it wasn't so stressful, but the reality is that they have told you in no uncertain terms that you are the one in the wrong for worrying in the first place. The message is that you shouldn't worry – as if you are in the wrong to do so. This doesn't help you one iota – it is, in fact, a triple whammy: it certainly doesn't detract from you being worried, it means you no longer have the confidence in that person for future support, and it puts you in such a vulnerable position without getting the support that you are seeking. If anything, it just makes the whole situation worse. And it's not true – you absolutely are right to be worried; by definition, if something worries you, then it is a perfectly valid concern, irrespective of whether you are the only person in existence who has ever had, and ever will have, those concerns. They are very real to you, and to have them dismissed without thought can be seriously problematic.

Well, everyone finds that difficult

This is similar in nature to the above – only this time, it's not that you are on your own with the concerns and therefore dismissed, but your difficulties are diluted by the response being that you are just one among many, that everyone finds the same thing difficult to some degree, therefore it's not worth taking your difficulty into account. Unfortunately, people often don't seem to realize that there are scales of difficulty – suggesting that everyone finds, for example, meeting new people 'difficult' is to massively simplify the situation. One person's 'difficulty' could be mild discomfort that lasts all of three minutes, whereas your 'difficulty' could be crippling anxiety that lasts three months and has an ongoing impact on your mental wellbeing. Is it fair, then, to group those experiences together? I suggest not.

Ok, I might have said that, but you know what I meant

So often, when you raise an issue with someone, the immediate response is denial – 'I didn't say that' is one way of denying, but 'I didn't mean that' and 'you must have known what I meant' are also examples of where the narrative moves into gaslighting territory. Being told one thing originally, and then there being some level of positioning you as the one who is in the wrong for believing it, is simply to blame you for someone's actions without taking any responsibility. If you had understood what the person actually meant (as opposed to what they said) then presumably there wouldn't be an issue. The very fact that there is an issue demonstrates that you weren't in mind-reading mode and 'simply' accepted what had been said as the truth. This, yet again, leaves you in an extremely vulnerable position – not only do you have to shoulder the blame for somehow getting it wrong, you are also left in a situation in which you can no longer fully trust the other person, for fear of repeating the apparent mistake.

You don't really mean/feel/experience that

You don't really mean that.

You can't really feel like that.

That wasn't really how it went.

These are all examples of very clear gaslighting that question your reality. Saying something with meaning only to be told that you don't really mean it; explaining how you feel only to be told that it's not a valid feeling; trying to get others to understand how you've experienced something to be told that you are in the wrong – whatever the intention, these all bear the risk of forcing you to question your reality. It's tough enough having to hear these things even if you are confident that you are in the right – but for those of you who lack that confidence you might even question whether you are, in fact, in the wrong. Ongoing exposure to such responses can lead to your sense of self eroding away, until you no longer have a sense of identity that you can rely on.

You didn't used to behave like this (unmasking)

All the examples that have been given thus far have the potential for far-reaching, negative consequences. Perhaps one of the most difficult examples of gaslighting to face up to, though, is when you have gone through your journey of discovery as an autistic adult, learned about who you really are, realized that much – if not all – of your life has been hiding under a mask, and making the decision to unmask – to become your true, authentic, autistic self … only to find that those around you refuse to believe that you are finally being true to yourself, and demonstrate that they 'believed' more in how you used to be, rather than how you are now. So many of you will have to suffer from comments such as 'you didn't used to be like this', 'you're only being like this because of your label', 'that's not who you really are', 'why can't you behave like you used to' – and so on. Having the bravery to unmask can take a huge emotional effort – to have that effort disregarded and dismissed as though you are pretending to be someone else (when, ironically, it is the reverse that is the case) can be devastating.

What Works for Autistic Adults is published by Sheldon Press.