Interacting Autistically

For the past few years I’ve been seeing a private psychiatrist who has helped me a lot with my anxiety, depression and trauma. I’ve left university now, and been kicked out of the university’s social group for Autistic students, and all the similar groups I can go to are patronising, pathologising and difficult for me to access. Me and the psychiatrist both agree that the main thing contributing to my depression at the moment is my isolation and loneliness.

I’ve given up on achieving the necessary amount of meaningful human interaction at groups for Autistic people, and started looking for groups aimed at neurotypicals. (Of course these groups don’t say they’re specially aimed at NTs, but I think in practice they usually are.) I’ve found a birdwatching group that runs regular talks that have an interval where people chat over cups of tea. At the first one I went to, someone approached me and talked to me because I was new. The room was noisy and distracting, so I forgot to look at her, and I think she misinterpreted it as meaning I didn’t want to talk to her. I find it hard to know what to say in those situations, and in general I’m bad at human interaction and relationships.

My psychiatrist said I should try to learn conversation skills from books – there are social skills books aimed at NTs, as well as at Autistic people. I said I was worried those books would teach me to behave like an NT, and I wanted to interact Autistically, but I couldn’t explain what I meant by that. He said I needed to learn social skills if I was going to make friends and that refusing to do it was like moving to France and refusing to learn French.

I don’t think that analogy is right though. My situation is more like being a native speaker of a language that’s been suppressed, like Welsh or British Sign Language, and growing up being bullied and punished for using your native language. You’re told you have to learn English, the language of the people who mistreated you, if you’re going to have relationships. But you’re incapable of becoming fluent in English – you make a lot of mistakes when you speak it, you can only understand part of what people say to you, and you manage by parroting phrases you’ve learned but don’t fully understand.

I know I need to better understand and use neurotypical communication, but I want people to try to understand my language as well. I also see a difference between passing skills that help me avoid discrimination and smooth over interactions with NTs I don’t want deep relationships with; and social skills that help me have meaningful relationships as an Autistic person. I want to learn both sets of skills.

It’s probably inherent to the field of psychiatry that the aim is to fix people’s brains and bring them closer to being NT. That approach works for my actual brain problems like depression, but not for difficulties caused by being Autistic.

The psychiatrist thinks I’m being stubborn. But I like my stubbornness. I think it’s helped me get through times when everyone else thought they knew what was best for me, even though I understand myself better than anyone.

I think my concept of ‘interacting Autistically’ comes from Jim Sinclair. In their article about how they founded the first Autistic community, Sinclair wrote about Autistic people connecting with each other using the things they’re passionate about, and interacting by stimming together.

This is what I mean by incinerating Autistically:

• Sharing information about things we’re interested in
• Sharing our stims
• Using and accepting atypical body language, and trying to get to know other people’s body language
• Being literal and saying what we mean, and/or communicating through echolalia
• Typing to communicate – online and/or in person

Even though I’m Autistic, not all of these things come naturally to me. And I know most people aren’t going to interact with me like this all the time. But I want to try to learn, and to find people who’ll accept me and my communication style. The problem is  I don’t know how to learn.

 

Note: I don’t know the correct pronouns for Jim Sinclair. I used singular they in this post, but I’ll correct it if I find out the right pronouns.

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

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:

All Cats Have Asperger Syndrome and being an aspie woman

[Image description: the cover of All Cats Have Asperger Syndrome, which features a grey tabby kitten with an open mouth. A sticker indicates that the book was shortlisted by the Children’s Book Council of Australia.]

In conversations about Autistic people and our frequent love of cats, people often mention the book All Cats Have Asperger Syndrome by Kathy Hoopmann. It’s a children’s book that puts information about Asperger’s syndrome next to photos of cats that vaguely relate to the text. This is presumably to bring out the similarities between aspies and cats, like our love of routine, sensitive hearing and avoidance of eye contact. I think it’s a great idea, but I hated it because of the pronouns.

All Cats Have Asperger Syndrome refers to Aspergian people using only masculine pronouns (he/him/his). I’ve read a lot of books that always use masculine pronouns to refer to people whose gender is arbitrary, and I find this sexist and unpleasant, but it’s never put me off completely like it did with All Cats. But in the context of Autism, gender is a big deal for me.

I was twenty when it was first suggested that I might be Aspergian, and at first I thought it was ridiculous, because I was nothing like what I thought Asperger’s was. Then when I started reading about it I realised that Asperger’s would explain a lot of the things I thought were uniquely wrong with me, like my highly sensitive hearing and literal understanding of language. But I also read descriptions that I didn’t relate to at all, like the idea of a ‘little professor’ who is obsessed with computers or public transport and who doesn’t understand pretend games.

As I waited for my NHS Asperger’s assessment I was desperate to know if I had found the explanation for why I felt so different from everyone else, and for the things I had always thought were wrong with me. I built myself up for the day when I’d finally know the answer. The appointment was a few weeks before I was due to start university and I was glad that my diagnosis would come in time for me to get extra support.

But the psychiatrist decided that although I met most of the criteria for Asperger’s, she thought my intense interests in cats and fiction were normal, so I didn’t meet the narrow interest criterion. She said she couldn’t tell whether I had Asperger’s or not, and that I’d need to have another assessment with someone else. But she didn’t know how long I’d have to wait or even whether the assessment would be funded. I was distraught.

But I was lucky. My parents found a psychologist who specialised in diagnosing Aspergian girls and women, and paid for me to have a private assessment just before I started university.

Around that time I learned that the Aspergian traits of girls and women often appear different from those of boys and men, and that the way most nonautistic people understand and write about Asperger’s is based on how it appears in boys only. It’s not just me this affects; so many Autistic women have stories of missing a diagnosis in childhood, of having to fight to get one, of having multiple misdiagnoses.

Eventually I found a list of Aspergian traits specific to women and felt so relieved to learn that other people like me existed and to see our existence recognised. I learned that although the special interests of Autistic boys tend to be focused on things other people see as weird, Autistic girls often have unusually intense interests in topics other girls find interesting– things like animals and literature.

It was painful growing up not knowing there was anyone else like me, and believing there was something terribly wrong with me. And it was painful going through a failed assessment, to get my hopes up and share personal information with a stranger so I could get an answer that never came. I knew these experiences were likely related to my gender. My mum bought me All Cats Have Asperger Syndrome right after I got my diagnosis, when the pain was still raw. So I couldn’t bear to see another example of Autistic women being ignored and left out.

Fragile mind

(Trigger warning: mention of self-harm)

I started university three years ago with mental health problems and various psychological issues that made life difficult. I had extremely low self-esteem and I was convinced that every piece of work I produced was terrible. I was frightened of authority figures, including the tutors, and being on the campus made me anxious. I decided that given my social difficulties in the past it was best to avoid the other students as much as possible.

Glimpses of unseen autism

Looking through some family photos I found one of me as a little girl, smiling as I created two lines of plastic animals. Lining up toys is one of those famous signs of autism, but I doubt my parents knew that. The ways I’m autistic are subtle and easy to dismiss, but I’ve realised that the signs were always there for me, even if nobody recognised them.

At school, when I was ten, I wanted to do my project on cheetahs but the teacher told me I should do it on the Botanical Gardens because I went there most weekends. Whenever our task was to write about what we did at the weekend I would wrote about going to the Botanics for a few hours to feed the squirrels. I didn’t write that in the rest of my free time I was reading about cheetahs and other cats, pretending to be a cat, and sitting by the radiator to watch my own cat. These things were unremarkable and not worth mentioning. I’d been doing them every day for as long as I could remember.

Another thing I’d always done was spinning. I became an expert at pushing with the balls of my feet to spin on my heels as fast as I could go. I’d hold out my arms to feel the tugging at my fingertips, or pull my arms across my chest against the force pulling them outwards. When I wasn’t spinning my hands never stopped moving. I squeezed my fingers, rolled up the edge of my t-shirt, and fiddled with my hair till it got tangled so often my mum told the hairdresser to cut my hair short like a boy’s to make me break the habit. But I also picked at my fingers, my lips, and the rest of my face.

I slept badly most of the time and none of the advice I was given helped much. In the evening the radio and my parents’ voices kept me awake and I was woken early in the morning by the sound of the central heating coming on. The sound of my brother bouncing a ball in the garden messed with my brain in ways I didn’t understand, but my parents said it was doing no harm. In the school playground it sounded like every child was screaming.

I was scared of the children and terrified of the teachers and did everything I could to avoid making them angry. But at home my frustration and anxiety surfaced. I acted out and melted down. The psychologist said I was fine, and put me on a reward system that fixed my behaviour but did nothing for my emotions.

I always had friends at school but nobody else saw the teasing. But being teased was better than being alone and risking worse bullying or other children’s pity. I was desperate to make other friends but I couldn’t manage it. When I could bring myself to admit this I was told it was due to my low self-esteem. My best friends were my cats.

I was shy. ‘She’s very shy’ was the explanation for every failed attempt at social interaction.

Home and school made a predictable routine that I was rarely forced out of.

I did my best to be a normal girl so people would like me and so they wouldn’t see the ways I was different from everyone I knew.

Normal girls from my background went away to university, but once I was there I couldn’t pretend any more. I couldn’t cope with bars and clubs, or understand other students’ social interactions, and without my family or school friends I was more alone than I’d ever been. The noise in my flat gave me panic attacks and depression took away the energy I used to act normal and compensate for everything that assaulted my senses.

I had to drop out, but a year later the GP treating my depression noticed my autisticness. Once I’d got over my disbelief I realised, this explains everything.

I’ve felt sad and angry that I wasn’t diagnosed as a child and had no support and no understanding of who I was. But I wonder now if support at that time would have meant being made to appear even more normal and my understanding would have been that I was disordered. Now I’m an adult I can choose not to accept these things.

But it’s comforting to look back and understand my life in the light of autism, and to see that autism has always been a part of me, because it feels like I know who I really am.

This is my post for Autistics Speaking Day 2014.

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:

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.

The end of a special interest

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.