I am autism and I have a voice

Trigger warning: ableism

People magazine has published an article on Bob and Suzanne Wright, the founders of Autism Speaks Continue reading

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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’.