I’m still working on the next post in my Autism and Empathy series, so in the meantime, here’s a discussion of some of the words used to talk about autism.
When I tell someone about my autism, I usually say that I am autistic rather than I have autism. For me, being autistic is a big part of who I am, so I like to talk about it in a way that emphasises its importance.
If you are talking about me (and I hope you are) then I would prefer you to say that I am autistic, but I also won’t mind at all if you say that I have autism. I definitely consider both things to be true, but I like the first way of phrasing it more. There are autistic people who feel differently about this, so it might be a good idea to ask if you aren’t sure how someone wants to be referred to.
One thing you should never do is tell people that they should say ‘has autism’ rather than ‘is autistic’ because ‘you shouldn’t define someone by their autism’ (unless you are autistic and are talking about how you want to be referred to). This has become quite a popular thing for well-meaning but ill-informed people to say, and unfortunately some have even started telling autistic people that they shouldn’t refer to themselves as autistic for this reason (life pro-tip: never tell someone how to describe their own identity).
This is rude, offensive and doesn’t make sense.
Firstly, it implies that being autistic is a negative thing – because otherwise why wouldn’t you want to be defined by it? I like being autistic. It has its problems, but overall I feel positively about it. Again, different autistic autistic people will have different feelings. But when you tell someone that they shouldn’t let their autism define them, you are talking about it as though it is a terrible thing that has happened to them, and they may not feel that way (also, if a terrible thing has happened to someone, telling them not to let it define them is unlikely to be a helpful thing to say; it will probably just sound patronising).
Secondly, being autistic is likely to be a large part of a person’s identity. My autism affects my personality, my interests, my emotions, my relationships, my senses and pretty much every aspect of my daily life. So when I think about who I am, being autistic is a big part of the story. There may be some autistic people who don’t really see it as a major part of who they are, but the point is you can’t assume: saying that people shouldn’t be defined by their autism implies that it is only a small part of who they are, and that might not be true.
Finally, it is simply not true that you are ‘defining someone by their autism’ if you refer to them as autistic, because using an adjective to refer to something isn’t the same thing as giving a definition of it. If I say, ‘The cup is blue’ I am not ‘defining the cup by its blueness’, I’m simply stating that it is blue. Adjectives describe things. They might be used in definitions but they aren’t, on their own, definitions. Nobody assumes when they are informed that the cup is blue that they have been told everything there is to know about it. Similarly, when I tell someone that I ‘am autistic’, it should be obvious that I am describing myself, not defining myself.
In summary, different autistic people like to be referred to in different ways and if you aren’t sure how to refer to someone it might be a good idea to ask them. The most important thing is that you don’t tell an autistic person how they should describe themselves, and don’t tell other people that they shouldn’t say ‘autistic person’ (unless of course they are specifically referring to someone who you know prefers to be described as a person with autism).
Asperger syndrome and high-functioning autism are two specific types of autism (there are others). I’m not going to go into the details of the criteria that are used to categorise an autistic person into one of these groups (it’s complicated and they can be a bit inconsistent).
The field of psychiatry (the part of medicine that looks at the mind) has recently replaced all of the different categories with the umbrella term autism spectrum disorder (ASD). This means that anyone who would have been diagnosed with autism, high-functioning autism, Asperger syndrome, or any other type of autism will now be diagnosed as having ASD.
This doesn’t mean that those other categories have ceased to exist, it just means that one particular field has stopped using them. If someone tells you have they have high-functioning autism then that’s what they have.
The psychiatrist who diagnosed me as autistic said that the sub-category that I am in is Asperger syndrome (even though this was not part of my written diagnosis as the term is not medically used any more). I do identify as having Asperger syndrome, but most of the time I prefer to say that I am autistic.
I probably wouldn’t use the term autism spectrum disorder to describe myself, because I don’t really think a spectrum is a good metaphor for autism (in fact I think it contributes to some common misunderstandings of autism, but I’ll save that for a future blog post).
Sometimes people use the terms ‘autist’ or ‘an autistic’ to refer to an autistic person. I quite like these terms and am happy to be referred to using either of them. Especially since ‘autist’ opens up a lot of punning opportunities (‘autist in residence’, ‘the autist formerly known as’).
Different autistic people use different language to talk about their autism. Many find the spectrum concept helpful and may describe themselves as having autism spectrum disorder. Others might describe themselves as having a specific type of autism (such as high-functioning autism or Asperger syndrome). Some may like the terms ‘autist’ and ‘an autistic’ while others may not. The important thing is to respect the language that an autistic person wants you to use, and if you aren’t sure what that is, ask.
Usually, when someone says the words ‘a bit autistic’, they are being offensive.
Firstly, you can’t be a bit autistic. In fact, you can’t be different amounts of autistic at all. Everyone is either autistic or not autistic. Among those of us who are autistic there is lots of variation in the features of our autism, but this doesn’t make any of us more or less autistic than anyone else.
Secondly, when people say that someone is ‘a bit autistic’, you can pretty much guarantee that what they actually mean is that the person has poor social skills. This is a problem because it reduces autism down to its social aspects and erases all the other features such as sensory differences, special interests, attention to detail and so on. Moreover, it ignores the fact that not all autistic people have poor social skills (something I have written about previously). Overall, this contributes to the widespread idea that the word autism simply means ‘a lack of social skills’.
If you are trying to say that someone has poor social skills there’s no need to bring up autism to do that, you can simply say that they have poor social skills.
A related phrase that sometimes comes up is ‘on the spectrum’. If you are using the phrase ‘on the spectrum’ in the same way that people use ‘a bit autistic’ (i.e. to mean that someone has poor social skills), then, well, see above. If you are using the phrase ‘on the spectrum’ to mean that someone is actually autistic, then, it depends on the context and the way you say it, but it might sound a bit disrespectful (unless of course you know that the autistic person in question like to be described as ‘on the spectrum). In generally, it is probably better to say ‘autistic’ or ‘on the autistic spectrum’.
Also, something that I would really love people to stop saying is ‘we’re all on the spectrum’. We’re really not. Sorry, but if you’re not autistic then you’re not on the autistic spectrum. Please get off our spectrum, thanks.
I don’t think it makes sense to describe people as ‘mildly autistic’ or ‘severely autistic’. This a complex topic that I’d like to write about in more detail in the future, but my main reason is because, as I said above, I don’t think you can be different amounts of autistic. Autism has a whole range of different features which may be present in different autistic people in different ways and to different extents. There is no one feature of autism which can be said to be the defining axis along which autistic people can be sorted.
If by ‘severely autistic’ you mean that an autistic person has a learning disability then I think you should say that.
The concept of ‘mild autism’ is usually applied to people like me who are good at passing as non-autistic. To ‘pass’, in the context of autism, means to have other people assume you are non-autistic (regardless of whether or not this is what you want). Part of the reason that many of us pass is because a lot of people have misconceptions about what autism is and therefore miss it when it is right in front of them. However, it is also a result of the conscious efforts that many of us make to seem ‘less autistic’ by suppressing and modifying our behaviour to conform to the standards expected of us.
Many autistic people, including me, start this process of forcing ourselves into a non-autistic mould long before we know we are autistic, because we want to appear ‘more normal’, make friends and avoid bullying. Even now that I understand that my differences are due to my autism and not something I should hide, it is very difficult to unlearn habits that I have spent years developing. This constant self-monitoring, self-censorship and self-contortion is not only exhausting, but also prevents us from expressing ourselves, which can be emotionally damaging.
The fact that some autistic people are more likely to pass than others does mean that our experiences, and the difficulties we face, are different in some ways, but it doesn’t mean that some of us have ‘milder’ autism than others. Once when I told someone I was autistic their response was that ‘it must be very mild’, because they hadn’t noticed. It seems difficult for people to imagine that they might have missed my autism because a) they know hardly anything about autism, and b) I have spent my entire life practising not seeming autistic. Instead, it is much easier to assume that my autism must have slipped under their radar due to me only being one step above lemon and herb on the Nandos autistic-ness scale.
The idea that those of us who pass are less autistic is related to the idea that neurological conditions should be diagnosed on the basis of the ability to perform roles rather than the actual experience of the person (discussed in my social skills blog post).
Rather than carrying on the unhelpful (and unscientific) exercise of ranking the severity of different autistic experiences, surely we should instead be trying to recognise all of the difficulties faced by different autistic people, and the way that many of these difficulties are created or exacerbated by artificial social conditions that we could change for the better.
Finally, the concept of severity is usually only used to describe things that are unambiguously bad (like hurricanes). So to talk about autism as being mild or severe presupposes that being autistic is a bad thing, which, as I’ve discussed, is not necessarily the case.
In my writing I tend to use the phrase ‘non-autistic people’ to refer to people who are not autistic, because it is very clear and unambiguous. However, there are various other terms that are or have been used to refer to such people, so I want to run through a few of them, starting with one which you definitely shouldn’t use.
Until not that long ago, most academic literature on autism used the word ‘normal’ to refer to people who don’t have autism. Authors tended to say things like, ‘We compared a group of autistic children to a group of normal children and found that…’. Sometimes, rather than ‘normal’ it would be ‘clinically normal’ or ‘normally developing’. The points I’m going to make below apply equally to all of these terms.
To some, it may not seem like there is anything wrong with using the word ‘normal’ in this way. After all, isn’t it true that autistic people are different to the majority of people in a number of significant ways? Surely, then, if you are autistic it is simply a fact that you are not normal.
The problem is that the word ‘normal’ is used to mean a range of different things.
Sometimes, ‘normal’ simply means ‘typical’ or ‘what usually happens’. In other words it means that it is the most common thing. In this sense, to say that something is not normal is to say that it is different to what usually happens.
Often, however, ‘normal’ refers to the way that something should be. For example, people who have bigoted views about certain kinds of relationships often say that those relationships ‘aren’t normal’. When they say this, they aren’t observing that those types of relationships are uncommon, they are saying that they aren’t how relationships should be (which is, of course, nonsense). Presumably, if the type of relationship that the bigot is referring to became so popular that it actually was the most common type of relationship, they still would not consider it normal even though it was typical.
Another meaning of normal, which overlaps with the previous one, is ‘in line with social conventions’. Groups of humans have a tendency to develop conventions of behaviour (also known as ‘norms’), which people are expected to follow. Sometimes these are useful, but a lot of the time they have no purpose other than to make people behave in the same way, and people are often stigmatised, bullied, or socially excluded if they don’t follow them. In this sense, saying that something isn’t normal is saying that it doesn’t conform to convention, and it is usually implied that this is a bad thing.
If a child is messing around and their parent says, ‘don’t do that, it’s not normal’, they probably don’t mean ‘it’s not a very common thing for people to do’. Presumably most parents don’t have a problem in general with their children doing things which are rarely done (e.g. winning a Nobel prize). Instead, they probably mean a mixture of ‘it’s not how people should behave’ and ‘it is unconventional, which means people will think you are weird, which is a bad thing’.
If a word can be interpreted in a lot of different ways, some of which are inaccurate or harmful, then it is often best to avoid using it unless it is very clear from the context what your intended meaning is. Let’s say you looked up a café you were thinking of visiting and you found only one review, which simply said, ‘This café is not normal’. What would you make of it? Do they mean that it is atypical, perhaps in a good way (maybe it has unusually good jacket potatoes)? Or do they mean that it isn’t how a café should be, or that is fails to meet the standards that cafés should comply with? Without further explanation, you can’t tell.
If we are being generous to academic authors who have used the word ‘normal’ to refer to people who aren’t autistic, we could assume they just mean ‘typical’. And as an autistic person, I don’t have a problem with being seen as atypical. For as long as I can remember, it has been pretty obvious to me that most of the people around me seemed to be experiencing the world differently to me and behaving differently to me. In fact, when someone points out my atypicality I am more likely to feel recognised and understood than offended.
The problem is that the authors never specify which meaning(s) of ‘normal’ they intend, so it is always left open to interpretation. And if you pay attention to the word ‘normal’ as it is used in daily life, you will notice that is actually not very often that it is used purely to mean ‘typical’. So the effect of referring to non-autistic people as normal is that it spreads the idea that autistic people are (in all senses) abnormal.
Hopefully, that is enough to convince most people that the word ‘normal’ shouldn’t be used in this way (and I suspect a lot of people reading this already knew that anyway). However, there is one more argument that I could imagine people making, so I want to address it before moving on.
Someone might argue that, while it isn’t a nice thing to say, technically, from a scientific point of view, it is true that people shouldn’t be autistic. Because surely our knowledge of biology tells us that there is a certain way that a human is supposed to develop, and sometimes something goes wrong in this process, which leads to autism. From this it follows that, biologically speaking, people shouldn’t be autistic. Right?
Wrong. The reason this argument is wrong rests on one very simple fact, a fact which tends to get overlooked in a lot of discussions about things which involve the overlap of biology and society. I would like to write this in very large capital letters with flashing lights around them, but I instead I will try to be a bit more normal and just put it in bold. The fact is: science cannot tell us anything about how things should be.
Science can help us to describe the things around us. It can tell us what there is, what it is like, what it does, and even how it works. But science has nothing, literally nothing, to say about the question of what should and shouldn’t happen. No amount of empirical observation can bring you any closer to knowing how things ought to be. That is a purely philosophical question which can’t be answered using scientific methods.
Science does tell us that human development tends to roughly follow a certain trajectory, and that in some people it deviates from this path in a certain set of ways, and this results in the person being what we call autistic. Science does tell us that autism is atypical (it is much less common than not being autistic). You could even use scientific evidence to make arguments about whether the features of autism make people more or less well adapted for their environment (which in biology is usually defined as being more or less likely to reproduce). But none of this will ever tell you anything about whether or not people should be autistic. If you want to make an argument about that, you will have to find something other than science to back it up with.
Fortunately, the word ‘normal’ has now been largely replaced in autism academic literature with the much better word ‘neurotypical’, meaning ‘neurologically typical’. ‘Neuro-‘ means ‘relating to the nervous system’ (which includes the brain), so to say that someone is neurotypical is to say that their brain and the rest of their nervous system functions in the typical way.
This is a big improvement because we are now specifying that we mean ‘typical’ rather than saying ‘normal’ and then leaving it open to interpretation. Also, we are specifying that we mean that the person is typical in terms of their neurology rather than anything else (although it is worth pointing out that autism does affect parts of the body other than the nervous system).
Someone who is not neurotypical (e.g. an autistic person) is described as being ‘neuroatypical’ or ‘neurodivergent’. I like these terms because they recognise that in addition to the typical type of nervous system, there are other types (in other words, the world is ‘neurodiverse’), and they do not imply that people should be a certain way.
Note: sometimes people use the word ‘neurodiverse’ as a synonym for ‘neuroatypical’/’neurodivergent’. This doesn’t make sense to me, because surely the whole idea of diversity is that it is the group that is diverse, not any one person.
Despite the advantages of the term ‘neurotypical’, it is important to note that it is not actually a synonym for ‘non-autistic’. Although it is true that anyone who is neurotypical is not autistic, the term also implies that they are not neurodivergent in any other way. And there is currently a lot of debate about which people should be considered neurodivergent. For example, people with other developmental differences affecting the nervous system, such as ADHD and dyspraxia, are generally considered as being neurodivergent, and people with mental illnesses are sometimes also included. This has led some to point out that ‘neurotypical’ people may not actually be typical at all – they may in fact be in the minority.
I am in favour of this opening up of the concept of neurodivergence, because it recognises all of the different kinds of brains that are out there and doesn’t separate people who may actually gain a lot from talking to each other about our experiences.
But it means that we should probably be careful about using the word ‘neurotypical’ to mean ‘not autistic’. For example, when an author says, ‘We compared a group of autistic children to a group of neurotypical children’, what they probably actually mean is that they compared the autistic children to a group of non-autistic children. They probably don’t actually mean that none of the children in the control group were neurodivergent in any way. (Note that this problem also applies to using the word ‘normal’).
Luckily, there’s a new word on the scene.
The word allistic literally means ‘not autistic’. That’s all there is to it, there’s no ambiguity and no vagueness. In fact, you can find out whether you are allistic right now by taking my simple quiz:
Okay, now count up how many of your answers were ‘Yes’. If you had 1 ‘Yes’ then you are not allistic. If you had 0 then you are allistic.
It really is as simple as that.
I like the term ‘allistic’ because it is clear and specific and is less clunky than ‘non-autistic’.
However, so far I haven’t used ‘allistic’ in my blog posts, because most people are unfamiliar with it and I want my writing to be accessible to as many people as possible. I could add a note at the start of each post that uses the term, but I still feel like it might make it harder for people to follow. Maybe leave a comment and let me know what you think.
There is a lot of language used to describe people who are and aren’t autistic. The important thing is to pay attention to the language that autistic people want you to use, and also to avoid saying things that spread misunderstandings of autism.
I hope this post has been interesting and/or helpful. Let me know if you have any comments or questions, or anything you’d like me to discuss in future posts. I am still working on the next post in my empathy series, but there is quite a bit of reading I want to do for it, so in the meantime I may write some more posts like this that are less research-intensive.