My thoughts on #AutismSpeaks10

(Trigger warnings: ableism, eugenics, murder, abuse, torture, ABA, bullying)

Autistic people have been criticising the American non-profit organisation Autism Speaks for years, while they ignore us and actively try to silence us. For people who are unfamiliar with Autism Speaks, here is a summary of what it does wrong:

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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.

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.

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.

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.