Asexual, aromantic, Autistic

Pretty much the only way I resemble the stereotypes about autism is that I’m asexual. This means I don’t experience sexual attraction. I’m also aromantic, which means I don’t experience romantic attraction either. Sexual and romantic attraction are distinct, though I don’t understand the difference between them. I don’t see myself ever having a sexual or romantic relationship, only close friendships, and that’s fine.

Asexual people are diverse. Some of us do experience romantic attraction, with different romantic orientations such as biromantic or heteroromantic, and have romantic relationships, often with sexual people. Some asexual people have sex with their romantic partners, for example for the benefit of their partners, or in order to have children. Other asexual people, like me, are repulsed by sex.

(For more information on asexuality, try the Asexual Visibility and Education Network.)

There is a small amount of evidence that Autistic people are more likely to be asexual than nonautistic people are, although the methods used in these studies are problematic. The possibility of some kind of link between autism and asexuality is fascinating to me, but studies that connect the two can pathologise both. (The summary of this paper seems to imply that asexuality, and also bisexuality and tomboyism, are either testosterone-related medical conditions or abnormalities, and contains the phrase ‘increased male risk to developing autism’.)

(Speaking of stereotypes and pathologising, I have a psychiatrist’s letter that claims my ‘lack of interest in the same things as [my] peers including any sexual relations’ is suggestive of Asperger’s.)

Double disavowal

Most Autistic people do experience sexual attraction, so I can see why sexual Autistic people would want to distance themselves from the stereotypes and emphasise their sexuality. When Lindsey Nebeker asked Autistic self-advocates about myths about Autism and sexuality, many people talked about the myth that we don’t have sexual relationships, and one person said the greatest myth is that we are all asexual (then ignorantly cited the fact that many Autistic people have children as evidence of their sexuality). David Preyde wrote of this myth,

This pernicious myth is making us even more isolated, and making it even harder to find whatever form of human connection we might be looking for.

My people are being cockblocked.

It needs to stop.

But sometimes it feels a bit like they want to distance themselves from me, too.

It’s not just Autistic people who are assumed to all be asexual, but disabled people in general. And this has led to many disabled people disavowing asexuality as they claim that all disabled people are in fact sexual, just like everyone else.

And at the same time, the asexual community disavows disability. Asexuality is often seen as evidence of a disorder, and in countering this, many asexual people emphasise the fact that there is nothing wrong with them.

Asexual people who deny a link between autism and asexuality often pathologise autism at the same time. For example, Lara Landis wrote on Asexual News,

A higher incidence of Asexuality among people with Asperger’s Syndrome is to be expected, An inability to perform relationships is listed as a symptom of for the conditions, according to Medscape.com. An inability to form relationships applies to all relationships, not just sexual ones.

The continued pathologization of Asexuality is not a tenable position.

And a comment on the article complained about too many people coming out as Autistic on an asexuality forum, making the asexuals look bad.

I’m asexual too but these people want nothing to do with me.

This double disavowal creates a horrible situation for people who are both asexual and disabled.

Shared experiences

Autistic and asexual people share many experiences. Each group is thought to make up about 1% of the population, and being a minority leads to us feeling we don’t fit in. Many people’s reactions to learning that they are Autistic or asexual are similar: this explains why I feel so different from everyone else.

Both groups are pathologised and seen to be in need of curing. Both groups are poorly represented in the media. Both identities are inherent to who we are, and influence our relationships.

And the experiences of both the asexual and the Autistic communities are disbelieved and invalidated. I’ve been told that everyone experiences sexual attraction, and even the names of the people I fancy. I’ve been told that everyone in the room noticed the nonverbal communication I didn’t notice, and that sounds that hurt me are harmless.

Autistic people and asexual people have a lot in common, so it’s very sad when members of one group try to disassociate themselves from members of the other.

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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.

The end of a special interest

IMG_2333

Common moorhens: two adults, a juvenile and a chick. [Image description: four common moorhens in a pond. The two adult birds have slate-grey undersides and heads, olive-brown backs, yellow legs with long toes and no webbing, white streaks along their flanks, white undertail feathers, yellow beak tips, and red beaks and forehead patches. The juvenile is slightly smaller than the adults and has a brown body with white flank streaks and undertail feathers. The chick is about a third of the size of an adult and has fluffy black feathers, a red beak, a pinkish-red featherless patch on the top of its head, and blue skin around its eyes.]

For the last two and a half years my special interest has been the common moorhen. Several of them live in the parks near my house and during the past two summers I spent most of my free time sitting by their ponds, watching them raise their chicks. And I read about their behaviour, particularly their breeding behaviour. I wanted to know everything about them. I felt a little thrill of excitement whenever I heard one of their kyurrk calls or whenever something moorhen-related turned up unexpectedly, like in a university lecture. I have just lived through the Years of the Moorhen, when I was a Moorhen Person.

In the DSM (the official American classification of psychiatric conditions*) we have ‘highly restricted, fixated interests that are abnormal in intensity or focus’. So they think special interests are when Autistic people are interested in weird things, or so interested in normal things that it becomes weird. In this context, perhaps, ‘special’ is a euphemism. I like the term special interest though, because interests like moorhens do feel special to me. They feel like a big part of who I am and are one of the most important things in my life. They’re one of the best things about being Autistic. My special interests mark out the phases of my life, because they determine who I was at each time.

But now my special interest in moorhens is ending. For a while they’ve been getting less exiting, and now I’ve started to feel like there are more important things than going to see them. And this makes me feel lost. I don’t know who I am or what I’m supposed to do with myself. I know another special interest will come along but I don’t know when and I’m stuck waiting. I’ve had bursts of excitement about my blog and other Autism blogs and the Loud Hands project, but I don’t know if any of this will stay.

Special interests usually sneak up on me. They tend to start like an everyday interest, with me thinking about something I’ve had a passing interest in before, and starting to learn about it. Then at some point the topic becomes intensely exiting and significant. After that they gradually decline in intensity, until they fizzle out. The process usually takes between a few months and a few years.

I’ll miss going to see the moorhens, and there is so much about them I don’t understand. People have told me I can still watch them and read about them, but I know that realistically I’ll use my time and energy for other things. I feel like I have to grieve a bit about them.

*Autism isn’t a psychiatric condition, but for some reason it’s included in the DSM anyway.

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’.

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.