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’.

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Learning to stim again

When I was little, when I was alone, I spent a lot of time spinning or bouncing a ball against a wall. This is stimming – repetitive behaviours associated with autism. But in public my stims were less visible, stunted. I stretched my fingers, picked my fingernails, fiddled with my hair and flicked my eyes around. People often commented on this, which I hated, but I couldn’t stop these stims. I think they were the minimum amount of stimming my brain could cope with.

Sometimes, when I was really upset, I’d put my hands on my head and rock. It made me feel like a freak.

Later, when I began reading about the autism spectrum, all these stims, the fact that I couldn’t stay still, made sense. But I thought I was only a low-key stimmer, mainly a fidgeter. The obvious, stereotypically autistic stims were rocking, flapping and spinning. I’d grown out of spinning, I hardly ever rocked, and I never flapped.

But out of curiosity I tried rocking again, and it felt good, even though I thought it made me look like a disturbed child. I started to shed some of my prejudice against being visibly Autistic, and rocking started to feel completely natural. I rock every day now, but I don’t always feel comfortable doing it in public.

tangle

[Image description: my hand holding a ‘Tangle’ toy, a loop made up of pieces of curved, rubber-coated blue, green and white plastic. My thumb and the Tangle are slightly blurred because they’re moving. My wrist is resting on a wooden desk. In the background are some computer cables.]

And I read a forum thread about stim toys and bought a ‘Tangle’ toy. Tangles seem to complement and facilitate the way my hands have always wanted to move, and their textures are relaxing. Today I have a large collection of Tangles and other stim toys. I can hide them under a desk or in a pocket and have a satisfying stim that’s less obvious when I’m in public.

I tried flapping, and the first time it felt awkward. But later I found myself flapping again spontaneously. It’s grown on me. And my natural reaction to intense happiness now is to flap and jump. Birds often make me this happy, and I think of a young bird trying to take off before its wings are fully developed. It’s a wonderfully Autistic way to express happiness.

I think supressing highly visible stims was bad for me. I’m sad that it became so automatic. Stimming helps me relax, and deal with sadness and anxiety so they’re less likely to overwhelm me, and get my brain in order after sensory overload. Sometimes I need to rock to get these benefits. Supressing it meant that for most of my life I was missing out on all this.

Stimming helps me think, and suppressing it into less obvious forms takes up energy and brainpower I could use for something else.

I remember sitting in assembly fidgeting with a toy and a teacher telling me to put it away so I could listen to the assembly. I knew that I would listen better with the stim toy but I was obedient at school so I wrung my hands and picked my nails instead. Mostly, though, I stunted my stimming myself, due to my internalised ableism, self-consciousness and not wanting to stand out and get teased.

But I’ve read about other Autistic children being taught by parents and teachers not to stim, as part of ‘therapy’, having their hands held down, often with the phrase ‘quiet hands’.

I hope that children who have been abused this way will one day be able to learn to stim again, as I have.

Some stims, like head banging and nail picking, are harmful to the stimmer. But, as chaoticidealism wrote, the best way to deal with this is not to just supress the harmful stim but to replace it with another stim that fulfils the same need.

It’s only ableism that stops us seeing non-harmful stims for what they are – natural, beneficial and beautiful.

The difference between shyness and misunderstandings

I’m shy, but I also struggle with the disconnection between my autistic communication style and that of allistic people. I see these as separate issues, but people seem to confuse them. So I thought I’d try to explain how I see things.

Shyness is a personality trait that means I get nervous and uncomfortable when I’m around people I don’t know well and when I’m the centre of attention. Shyness causes me to not always say what I’d like to express.

And I’m Autistic and I often don’t know what to say in some types of social situation. Autistic people tend to say what we mean and we tend to assume that everyone else does too. But in A Field Guide to Earthlings, a book about allistic (nonautistic) behaviour, Ian Ford wrote about the many ways that allistic people don’t say what they mean. He argued that in some situations, such as small talk, the things allistic people say are not even the purpose of the interaction. Instead, while they say things that sound like they mean something, allistic people can have a silent exchange that an Autistic person can completely fail to understand or even notice. This idea seems bizarre to me, but it does explain a lot.

Sometimes allistic people’s interactions are about the things they say. I think this happens at university when I discuss zoology with the lecturers or the other students. The purpose of this type of interaction is to exchange knowledge and opinions on zoology; I understand this. I know how to discuss zoology. I have knowledge and opinions about it that I like to share and I generally understand what other people say about it. But in large groups and when I’m around people I don’t know, sometimes I stay silent when I think of something I could say, or I get nervous and say something wrong, because I’m shy.

But when people make small talk or try to have a friendly chat with me I don’t understand the purpose of the interaction. In the past I thought they were interested in what they were actually talking about, like the weather or what people did at the weekend, and I tried to say interesting things about the topic of the conversation. But we’d usually end up with an awkward silence and I never understood what I’d said wrong. Sometimes I couldn’t think of anything at all to say, so I didn’t say anything.

I’ve had lots of people tell me I need to relax around people and come out of my shell, or like myself more or be myself more, and the implication seems to be that when I do these things I’ll just know what to say. But this hardly ever helps. When I try to get over my shyness I end up with the same result.

When I tried to follow advice for dealing with shyness it really upset me when I seemed to fail again and again, and in the end I stopped trying.

I think this is because the problem is not shyness but that there is some fundamental difference in the way me and other people perceive our interactions. I focus on words and fail to notice or reciprocate what the allistic person is really trying to do.

More recently I’ve come to understand that words are often not their intended focus. And I think I’ve learned to imitate some of what allistic people do when they chat. Now when someone says, ‘How are you?’ I don’t try to answer the question but say, ‘Fine thanks, how are you?’ This seems effective when starting a conversation. And when someone asks me another question I answer it then ask them the same question back. I didn’t do this much before because I usually wasn’t interested in the answer. I this is a good method for asking appropriate questions, which is something I’ve been told I should do, but I’ve had a lot of trouble thinking of them.

This imitation of allistic communication seems to work for short conversations, but I worry that people would see through it if I kept it up for too long. I still only barely understand some aspects of allistic behaviour.

 

Edit: I should have probably made clear that not every Autistic person communicates like I do.

Disabled not disordered: autism and the social model

I’ve often come across Autistic people who say, ‘I don’t see it as a disability.’

And then there are people who say they suffer from autism because they can’t get a job or they’ve been bullied.

In both cases I think the same thing: haven’t they heard of the social model? I don’t think enough people have.

The social model of disability is a way of thinking about disability in which disability results not from an individual’s neurological, physical or mental characteristics but from barriers created by society. The social model distinguishes between impairment, which is when someone has an unusually low ability to do something, and disability, which is when someone is prevented from full participation in society on the basis of an impairment. Society is built to accommodate the needs of the majority and not the needs of people with minority brains, bodies and minds. This is the way I use and understand the word ‘disability’.

In contrast, in the medical model of disability, all the problems a disabled person faces are a result of their impairment. Disability is often used synonymously with impairment or disorder.

An example is when a wheelchair user who can’t walk is unable to enter a public building that has stairs and no ramp. According to the social model, not being able to walk is an impairment, but the problem, the reason they can’t get in the building, is because they are disabled by a lack of wheelchair access. The solution is to make the building accessible. In the medical model, they can’t get in the building because of their mobility impairment and the solution is to do research to find a cure for it.

Autistic people are disabled. Many of us have an impaired ability to process sensory information, and we’re disabled by environments that cause sensory overload. We’re disabled by the way it’s socially acceptable to wear strong perfume that makes us feel ill but it’s not acceptable to cope with stress by rocking. We’re disabled when people don’t say what they mean and we don’t understand them. We’re also disabled when we are able to understand others’ language or function in a noisy environment but it costs us more energy than it costs allistic people. We can end up exhausted.

I don’t think autism should be called a disorder, because to me disorder means an illness or something that’s wrong. Autism isn’t an illness or something wrong with us, it’s the things that Autistic people share, and those things are part of who we are. It’s associated with impairments, and with struggles, but even impairments and struggles don’t make something a disorder. When my cat died my grief was painful and debilitating, but we don’t call grief a disorder because it’s considered normal and reasonable and acceptable. Autism should be considered normal and reasonable and acceptable. (The problems autism causes for me aren’t nearly as bad as losing a loved one.)

And Autism should exist because if it didn’t, Autistic people would not exist. All people should have the right to exist.

Opponents of neurodiversity sometimes describe is as the idea that autism is ‘just a brain difference’. I don’t know if many neurodiversity supporters actually think this, but I think it’s clear that autism isn’t just a difference. Autistic people have impairments, such as in language and sensory processing. We also share things that don’t impair us but are just different, such as stims that don’t harm us, how we don’t make eye contact, and our ways of communicating. We share things we’re good at, like attention to detail, and things that make us happy, like our special interests. But, significantly, we’re disabled.

The social model means that although Autistic people have a harder time than allistic people, and although we suffer, much of this isn’t a direct result of being Autistic, but is caused by external forces. It means the way to make life better for us is not to cure us or train us to act like we’re not autistic but to change the way society treats us.

When I found out about the social model I felt empowered because it means that many of the things I struggle with don’t originate from within me.

The Autistic people who say they’re not disabled frustrate me because they sound like they’re denying the existence of all the social barriers that make life difficult for Autistic people.

And it frustrates me when people blame autism for problems that are not caused by autism. The people who want to eliminate us could use this to justify their stance that autism causes suffering so it would be better if autism, and therefore Autistic people, didn’t exist.

My black cat makes me feel lucky

Today (17th August) is Black Cat Appreciation Day. Black cats are underappreciated – they are less likely than cats of other colours to be adopted from American shelters.

In medieval Europe, cats, and especially black cats, became associated with evil and witchcraft, and many were killed as a result. These beliefs spread to North America. This is probably the reason they are now seen as bad luck in America and most of Europe, which is a possible explanation for their poor adoption chances. In Britain, black cats are traditionally seen as good luck, but in Britain too they are unpopular with adopters. Black cats are also seen as good luck in Japan.

Other people have argued that black cats are unpopular because they are plain-looking, or because they don’t look good in photos.

A few months ago my family adopted a black cat who I’ll refer to as D. His fur is beautiful and fascinating to me. In low light it looks pure black and shines silver, but in the sunlight parts of it light up golden brown. And sometimes you can see faint tabby stripes along his sides. His fur isn’t plain once you get to know it.

IMG_4057[Image description: The head and shoulders of D, a black cat with yellow eyes, seen from the side. He is gazing upwards and is lit by dappled sunlight. His fur shines with a mixture of silver and gold, with stripes visible around his neck. He’s wearing a silver collar.]

It’s hard to see where D is in the dark. This is the only disadvantage of his colour, and he wears a reflective collar with a bell, which helps a bit. In photos of him, pale things in the background tend to be overexposed, but I see this as a challenge to my photography skills rather than a problem. I think I’ve taken lots of nice photos of him with my compact digital camera.

D is one of the gentlest cats I’ve ever met. I used to think having a cat meant getting scratched occasionally, but he hasn’t scratched me once. I even let him use my hands as pretend prey, because he’s gentle when he catches and bites them. He’s very sweet towards me. When I open my bedroom door each morning he’s usually there waiting for me, and he gives my hands a good rub. When I touch him while he’s washing he’ll give my hand a little lick too.

IMG_3116[Image description: D lying on a brown blanket with one front leg stretched forwards. His yellow eyes are open wide.]

 He’s also incredibly cooperative for a cat. When we put flea treatment on him he just sits there and puts up with it. He loves being outside, but when it’s time to come inside in the evening he rarely protests.

But he’s an explorer too. He’s always sniffing things outside, and prowling around his territory, and sticking his head into dusty corners of the house. He loves to climb the apple tree in the garden. He was wobbly at first but now he’s confident and agile up there and has been exploring higher up in the branches. But he still gets into precarious-looking situations sometimes. (Luckily the tree’s not too high – he’s fallen from it before and landed on his paws with no problem and we could rescue him with a stepladder if he got stuck.)

IMG_4081[Image description: D in a tree in summer. Most of his body is supported by various small branches and one front leg is reaching towards a thicker, almost-vertical branch. His expression is alert and slightly worried.]

I don’t believe the colour of his fur affects anything other than his appearance and his visibility. But things have got better for me since we adopted D. Having him around helped with the sadness and loneliness I felt after our previous cat died. Stroking him or playing with him cheers me up when my mood is low. I feel very lucky that we were looking for a cat at the same time as he was looking for a home, and I’m really glad we weren’t put off by his blackness.

IMG_3412[Image description: D lying on a lawn with his eyes shut, gripping a blue toy fish in his front paws and contentedly biting its tail.]

Beyond wrong planet

For as long as I remember before I learned I was autistic, I’ve felt that I didn’t belong. Other humans were strange, unpredictable and often intimidating. I rarely made connections with them the way they always seemed to make with each other. I could tell I was different. I thought there was nowhere in the world where I fitted in.

After my diagnosis, the idea that I was born on the wrong planet came as a relief to me because it captured this feeling, that had hung over me my whole life but I’d never been able to fully express. And the wrong planet metaphor says I’m not a wrong person – it’s not that there is something wrong with me but that I don’t fit well with the rest of society.

The wrong planet metaphor is popular in books, websites and blogs, and I assume that this is because other people relate to this feeling too. But Autistic Bitch From Hell pointed out that when a minority group is seen as not fully human it makes it easier for people to justify prejudice and discrimination against them. When we publicly describe ourselves as being born on the wrong planet we’re probably unintentionally supporting other people’s attempts to dehumanise us and helping ableist attitudes to persist.

The wrong planet feeling lessened as I learned there were other people like me and when I met them online and in person. This makes me think that the wrong planet feeling is not simply something inherent to autism but is at least partly due to being in the minority. It makes me think it can be overcome.

It’s not surprising we feel like aliens when we’re surrounded by people who think differently from us, when we might not even be aware that people like us exist, and when people like us are not realistically represented in the media.

I’ve felt isolated by my mental illness as well. Like people with mental illness, Autistic people are disabled. This means that we live in a society that has not been designed to cater for our needs and our ways of being. That’s bound add to the feeling that we were born in the wrong place.

I think we should move beyond wrong planet, and treat it not as a truth about ourselves to be accepted but as something we should try to change. We can introduce Autistic children to each other so they know they’re not alone, we can teach people the truth about Autism, we can challenge disablement, and we should tell the world that Autistic people have as much right to Earth as anyone else.

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.