Tuesday, 3 March 2015

How ‘Person First Language Works in the Real World

Curtain rises to reveal a faintly but evenly lit, empty stage.

Autistic Man walks slowly on stage pulling a box by a rope.

Several coloured spotlights focus on the box, and follow it across the stage.

On the box is written "Autism".

Autistic Man stops and glances at the box but continues to hold the rope.

He turns to the audience.

He pauses for a few seconds, and speaks.


Pretty much everyone in contact with the autistic community will be familiar with person first language. We say “a person with autism” rather than “autistic” because this puts the person first. That sounds like a good idea. In fact, it does three things.

First, it introduces  the word “person”, to remind us we’re dealing with a person. Next, it puts “person” before “autism”, showing that the person comes first – there’s the ‘person first’ bit. Lastly, it puts “with” between the person and autism – “person with autism” shows that autism does not define the person. That seems to be a pretty good example of how to use language in a positive way.

Score. Woop. High five.

Unfortunately, that's not necessarily true.

Let’s look at that ‘person first’ phrase again, and put it in a simple sentence: "I am a person with autism." There are two things that are apparent. First we see that autism is something separate from the person. This allows autism to be a noun - it exists in this phrase as a separate thing.

Let’s compare the equivalent sentence: "I'm autistic." There is no separation of the person from their autistic characteristics. The focus is placed on a descriptive word. This difference has huge consequences.

When we use the word ‘autism’ our language allows us to discuss it in the same way as other nouns. It gains a identity as a separate thing, and can be described – and is often described – independently of the autistic person or autistic community. Possibly the best examples of this are a range of comments regularly heard from parents of autistic children in particular, but also sometimes from autistics themselves. Here are some examples:

        “She doesn't hate her child, but she does hate his autism."
        “I hate autism!” 
        “I hope they find a cure for autism.” 
        "Autism is a huge burden on my family.” 
        “Take that, autism!” 
        “My son struggles with his autism.”

What characterises all of these is that they treat autism as something separate and distinct from the person. The first example, copied and pasted directly from a recent online discussion, makes that separation very much explicit. That is only possible in a context where autism is allowed, in the collective mindset, to have an existence independent of the autistic person. Think about that for a minute. We know autism can’t exist as some separate ‘thing’ lurking in a cave or forest somewhere. However, we continually hear it spoken of almost like a separate being.

Now, a lot could be said about how the human mind deals with challenges, with the unknown, with fears, and how this ties in to the way the language of autism is used. That is a subject which I will return to another time. For now, I’d like to focus on a consideration of the role phrases like ‘person with autism’ play in creating a language environment in which the above quotes seem reasonable.

When we insist on the phrase ‘person with autism’ we not only close the door to other opinions and pass judgement on those who hold them, we directly facilitate the very thing this terminology is said to prevent. By separating the person from autism, we allow autism to be discussed without reference to the person, as above. That helps create an unrealistic intellectual environment with unfortunate consequences.

The most glaring examples are therapies that seek to treat autism as a disease, and studies that address aspects of the autistic experience as if autism were an object in a laboratory, facilitating the drive for dead-end and even harmful therapies and studies.

When 'autism' is considered to be separate from the person, rather than part of them, ideas about healing, curing, or recovering make sense - grammatically at least. That, however, directly enables discussions about healing, curing or recovering people from autism: the language make it possible. More importantly, not using that language makes such discussions difficult or impossible.

And that matters.

Perhaps the way to come at this is to look at a few simple examples. Now and again we hear people talk about someone who ‘had their autism healed’or was 'cured of autism', a phrase that suggests an injury such as a broken leg. A useful technique is to try swapping the key word and seeing can we make the sentence or phrase make sense still, so let’s put that into a sentence:

        Louise said her daughter was cured of autism

Using 'autistic' we are forced into one of two alternatives:

        Louise said her autistic daughter was cured


        Louise said her daughter was cured of her autistic characteristics

The first leaves us wondering what she was cured of - some infection perhaps? The second is more explicit, but it prompts its own questions. In both cases, however, the audience is prompted to inquire, which in turn forces the speaker to explain, and to then justify.

Let's take that last example as it drags 'characteristics' into the picture. That's an interesting word. It enables us to use the same sentence construction as the original sentence, swapping 'autism' for 'autistic characteristics', and allowing us make direct comparisons. We could swap out 'characteristics' for other words: attributes, nature, traits, features, aspects. They all provoke the same kind of response: "Characteristics? You don't 'cure' characteristics."

When someone says "I prefer to say I am autistic" it is a decision taken in a context where we are told 'person with autism' is better, and given decent arguments as to why that is so. By choosing 'autistic' the person is not just making a choice, they are going against the received wisom. There has to be a reason for that. When pressed, most people will eventually say something like "It feels right." I suggest that, in a community noted for a preoccupation with language, the above discussion explains the kind of reasoning - albeit subconscious - behind that feeling.

The flip-side of this: when a person talks about autistic characteristics or autistic traits or someone's autistic nature, they are denied the ability to even consider ideas like fixing, curing or recovering.

Instead, even when we are talking about characteristics which present difficulties, the appropriate words are 'mitigate', 'alleviate', 'circumvent', 'overcome'. Even 'modify', a word often used in relation to behaviours, is inapplicable. The characteristics are unchangeable; any issues they present require workarounds, tools or practice, not fixes.

Suddenly the whole environment within which therapies and studies are operating has changed. Now, the person with poor motor skills requires different tools or techniques to achieve a given goal - it is the environment which changes, not the person. That switch of focus is immensely significant.

It places those poor motor skills in the same place as myopia or left-handedness - a difference which, in itself, is not 'bad' but which may require additional or different tools to help that person perform the same task as someone with 'normal' vision or a right-handed preference - glasses or a left-handed can opener, for example.

One interesting consequence is that attention switches from dealing with a single, monolithic thing called autism, and begins to look at the actual separate characteristics of the individual, and to do so in a non-judgemental way, alongside all their other individual characteristics. With that comes respect from society, and dignity for the person, and these are the foundation stones of equality.

So, what of all that expensive research? Without a single target called autism much of it starts to look a little absurd, much like studies into the genetic causes of a taste for spicy food, analysis of newborn eye movements to detect early signs of sporting ability, or development of a pharmaceutical cure for awkward dance moves.

Actually, that last one would be good.

All this arises as a result of a simple change in how we use language.

With this, we are empowered, we presume a right to respect, and we wear our dignity and equality for all to see. More, we disempower those who constrain us, limit our horizons, deny us, disrespect us.

And that, my friends, is why I am autistic, and not a person with autism.


Autistic Man glances at the box and drops the rope.

With a quiet pop sound the box collapses.

The spotlights go out.

A golden glow brightens from stage right.

Autistic Man bows slightly, turns and exits towards the light.