They call me a disease

(Trigger warning: bullying.)

When I was a teenager, before I was diagnosed with depression and Asperger’s, I wrote this poem about what happened when I was little:

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Person-first language and being defined by our disabilities

Like many Autistic adults I have a strong dislike of the use of people-first/person-first language to talk about autism*. This is a way of referring to disabled people where you put the person before the disability and say ‘person with…’ or ‘person who has…’ (eg. people with Down syndrome, person with autism). I find it inappropriate for talking about autism because Autism isn’t something I ‘have’ that’s separate from me, but is a part of me, and the fact that people would want to separate it from me implies that it’s something undesirable. I use identity-first language: I’m Autistic.

When justifying the fact that the National Autistic Society doesn’t use identity-first language despite this being the preference of many Autistic people, an NAS spokesperson said,

Some people do not want to feel that they are ‘defined’ by their disability and prefer to be described as a ‘person with autism’ or someone ‘on the spectrum’.

This made me wonder about what being ‘defined by’ a disability means and how person-first language is supposed to avoid it.

We’re more than our disabilities

Andrew Pulrang wrote that when disabled people say they don’t want to be defined by their disabilities, they mean that they don’t want other people to behave as if their disability is their only important characteristic. He described the ‘frustration and pain’ of being seen as nothing more than a disability and not a whole, complex person. This matters – Pulrang wrote that when abled people see someone as nothing but a disability they assume they know everything important about the disabled person and may avoid talking to them or hiring them.

Pulrang, and another disabled person he quoted, wrote that their disabilities are a part of them, but not all of them, and that they want other people to see their other characteristics, not just their disabilities.

Soon after I was diagnosed with Asperger’s, more than one person explained to me that there is more to me than just Asperger’s because I have many other characteristics as well. I was surprised that they were concerned that I would define myself by my disability, because it seemed very obvious to me that I had traits other than my autistic traits. It also seemed strange that they wanted to remind me about things besides autism while I was still marvelling about how my diagnosis explained almost everything that was different between me and everyone else I knew. (Though I don’t remember getting the ‘disability doesn’t define you’ talk after I was diagnosed with depression.)

I don’t worry much about people defining me by my disabilities. I probably haven’t experienced it because I generally don’t ‘look disabled’; my disabilities aren’t particularly obvious and I often make some effort to hide them.

Language matters

Many people think in words, so it makes sense that the type of language we use can influence the way people think. People who promote person-first language often say that it helps you avoid defining people by their disabilities.

The People First website claims that PFL

eliminates generalizations, assumptions and stereotypes by focusing on the person rather than the disability.

Kathie Snow wrote on her (highly problematic IMHO) Disability is Natural website,

Like gender and ethnicity, disability is one of the many characteristics of being human…Would you want to be known by one trait, like your medical diagnosis?

Katie Nelson wrote,

It’s why you will never hear me say that Alex is autistic. It is not the defining adjective for him. He is an amazing, sweet, kind, loving, interesting, and wonderful person. He also deals with the challenges that come with having autism.

So PFL is supposed to avoid defining people by their disabilities by focusing on the fact the disabled people are individuals.

But I don’t think saying, ‘He’s autistic’ implies that autism is someone’s only characteristic, or something that’s incompatible with being sweet, kind, loving and interesting; English grammar doesn’t work this way. Adjectives (such as ‘autistic’) don’t define nouns (such as ‘person’), they add detail. You can say, ‘a purple vase’ or ‘a tall vase’ without suggesting that its colour or height are its only important characteristics. It might also be expensive, pretty, old, etc. And none of these adjectives detract from the fact that it is a vase.

People are happy to call someone friendly or blue-eyed without worrying that their language defines a person by their friendliness or eye colour. So it’s not the word order that causes an adjective to define a noun. I think people define others by their disabilities because of prejudice, stereotyping and ignorance. So when you insist on PFL to prevent this, you’re not fixing the source of the problem. It would be better to reduce the stigma associated with ‘autistic’. And by treating ‘autistic’ like it’s a rude word, PFL might even contribute to stigma.

I expect that prejudice, stereotyping and ignorance mean that members of other marginalised groups experience being defined by a single trait, such as their sexuality, race or religion. But nobody argues that we should use PFL for describing Black people, Muslims or gay people. We don’t say people with blackness/Muslimness/homosexuality. We don’t say,

You will never hear me say that Alex is gay. It is not the defining adjective for him. He is an amazing, sweet, kind, loving, interesting, and wonderful person. He also deals with the challenges that come with having homosexuality.

This contrast with the language of disability seems odd to me. I don’t know why the language of disability is different from the language used to describe any other trait. I think one of the main problems with PFL is that disability is the only aspect of human identity that it’s used for, so it sets disability apart as something strange, not a normal part of the human experience.

Psychologist Nick Haslam argued that when someone is described using a noun, for example, ‘an introvert’ or ‘an Autistic’, this language does imply that this is the characteristic that defines them, because it makes people think the description is a ‘fundamental, unchanging aspect of the person’. When you describe someone using an adjective, for example ‘an introverted person’ or ‘an Autistic person’, people are more likely to see it as just one of that person’s characteristics. So it’s probably a good idea to avoid terms like ‘Autistics’, ‘paraplegics’ and ‘the disabled’.  But I’m not convinced that person-first language is helpful.

*I don’t like PFL, but most disability communities, for example people with learning disabilities (UK)/intellectual disabilities (USA), have a preference for it, so it’s polite and respectful to use PFL when talking about these disabilities.

Not high-functioning

Last week someone told me I was high-functioning. I expect being given a functioning label is something that happens to most Autistic people eventually, but this was the first time it’s happened to me and it came as a shock.

‘I’m not high-functioning,’ I said.

‘You don’t consider yourself high-functioning?’ she said. She knows I have problems with self-esteem; I imagine her waiting to reassure me I was very high-functioning. (Nothing like those other autistics.)

‘I hate that word,’ I said, which she accepted. But later I was angry with myself for implying that I did consider myself high-functioning but just wanted people to use a different word for it.

This is how I consider myself:

I can speak.

I have above average intelligence (as measured by academic performance).

I get more care and support from my parents than do most people my age, but I need less care than many Autistic people do.

I’m not high-functioning. I’m not low-functioning. I will not label myself this way.

Functioning labels are vague, inaccurate and unhelpful.

There are no definitive criteria for deciding whether to label an Autistic ‘high-functioning’ or ‘low-functioning’, but labelling is often based on whether someone can speak (note that lack of speech doesn’t mean lack of communication), or live ‘independently’ (ie as independently as the average abled person), or on IQ (although there doesn’t seem to be an agreed cutoff point between a HF IQ and a LF IQ; and note that IQ testing has an ableist history, and that autists’ language impairments can make IQ scores misleading). But speech, level of independence and IQ don’t all neatly line up: the fact that someone can’t speak doesn’t mean they have a low IQ; the fact that someone has a high IQ doesn’t mean they can live as independently as an abled person, and so on. When you say a person or group of people is HF or LF based on one of  the criteria, you imply that they match the other criteria for that functioning label. This is invalid and promotes stereotyping.

But, as Corina argued, in reality, people who don’t ‘look autistic’ get called HF and people who do look like a stereotypical autistic person get called LF.

Autistic people are so diverse that we don’t fit into neat categories, but this means that just saying someone is autistic doesn’t tell you a huge amount about their abilities and needs. A more productive approach than attaching a functioning label is to treat each Autistic person as an individual, and talk about their individual needs and abilities. This gives much more information than if you just say ‘HF’ or ‘LF’.

Functioning labels also fail to capture how our abilities vary over time and in different contexts.

Functioning labels imply that autism is a bad thing.

To me, if someone or something is ‘functioning’ it means it’s working the way it should do. And the people who get called high-functioning are those who are less obviously autistic or have milder autism-related impairments. Sometimes, ‘high-functioning’ is said like it’s a complement.

So HF people are only a little bit autistic, and they work the way they should, and that’s good.

(Autism is an essential part of me. It is not a bad thing.)

‘High-functioning’ is used to deny us support.

Many people (eg. on Square 8) have written about how when Autistic people are seen as high-functioning they are expected manage without support and accommodations, despite being disabled. Failure to do so is blamed on not trying hard enough. When you don’t ‘look autistic’ it can be hard to convince other people of how you struggle. ‘High-functioning’ creates unreasonable expectations.

‘Low-functioning’ is used to deny our abilities.

And Amy Sequenzia wrote that when Autistic people are seen as low-functioning it is often assumed they are incapable of thought or self-expression, and should be pitied, and that when they prove otherwise they are seen as exceptional. This attitude could result in people not being given the chance to show what they are capable of.

Functioning labels are used to silence Autistic people.

When Autistic people complain about what is said about us and done to us they are often told they are ‘too high-functioning’ to know what it’s like to be truly autistic, and therefore they cannot speak for real autistic people. Real autistic people are low-functioning and incapable of communication or even knowing what’s best for themselves, so they need other people – nonautistic parents and ‘experts’ – to speak for them. This is an effective way of shutting Autistic people out of discussions about things that are important for us.

That’s why I hate the term ‘high-functioning’.

Internalised ableism, and how neurodiversity has helped me

I’ve always had low self-esteem. But when I was a teenager it became an intense, burning hatred for myself. I believed there was something terribly wrong with me and I wished I was someone else.

Now I know about autism I can see that a lot of the things I hated about myself were my autistic traits. I was deeply ashamed of how I could barely sustain a conversation with people I didn’t know, of the number of times I’d tried and failed to make a friend, of my awkwardness and the way other people seemed to become awkward around me, of how I couldn’t cope with loud noises. My face and posture didn’t look right, and I hated the sound of my voice. It sounded thick and flat and unclear. It sounded disabled.

I’m not sure of exactly where this internalised ableism came from. I was bullied. I went to some special needs classes and children never said ‘special needs’ without at least a small amount of scorn or pity. When I told people about the things I found difficult they said I needed to have more confidence or to like myself more or to meet more people, and when things didn’t change maybe I thought it was because I hadn’t tried hard enough. Maybe there’s something in my culture, or in human nature, that made me assume that being different meant there was something wrong with me.

Almost immediately after I got my Asperger’s diagnosis I felt some self-hatred lift. These things aren’t my fault, I thought, because I have a condition. The thing that was wrong with me was Asperger’s, which was a lot less bad than the things I’d thought previously.

Neurodiversity is the idea that neurological differences such as the autism spectrum, ADHD and dyslexia are not disorders but a part of natural human variation, and should be accommodated, not cured. Neurological disabilities are associated with strengths as well as weaknesses, but neurodiversity says all types of brain are of value not only because of this but also because they provide different perspectives that would be missing if all brains worked in the same way.

I came across neurodiversity on an Autism forum not long after my diagnosis and generally agreed with it, because I thought it made little sense that the majority neurology was assumed to be the only correct one. But it took me a while to apply this to myself and realise that all brains having value included my brain too.

Agreeing with neurodiversity forced me to accept myself. Autism is a part of me and is inseparable from everything else that makes me who I am. So if autism is ok and should exist then I’m ok and I should exist. Hating my autistic traits began to feel like I was letting other Autistic people down, because Autism is a part of them too. When I thought something bad about my autisticness I remembered this and I corrected myself. And reading people say they’re proud to be Autistic made me able to feel pride in myself in a way that thinking it’s not my fault because I have a condition never can.

I still struggle with my self-esteem, but I’ve made a lot of progress. Hoping I could be cured of autism would be undoing this progress, going back to hating myself and wishing I was someone else.

Having self-esteem as low as mine was extremely painful. This is why the way we talk about autism matters. When people say the way we are is a symptom of a disorder that needs to be cured or beaten, it does us harm. We get this from all angles and it threatens to push the vulnerable amongst us back to how I was as a teenager.

But I’m so happy sometimes that I know I’m Autistic and I have the Autistic community and there are people who value my brain.