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.

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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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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.

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.

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.