My contribution to Embracing Autism Month – enough (misdirected) ‘awareness’ and moving beyond mere ‘acceptance’… how about we begin to embrace autism?
Thank you, Martin Guinness of Guinness Entertainment, for making this video!
Rough Transcript (by me):
My name is Dawn-joy. I am autistic. I was diagnosed in my early forties – I am fifty now. Living and coping with life in general has been the hugest challenge for me. Being autistic is not in itself a huge challenge, but being autistic and coping with living in a social system, a spatially designed system, that is not innate and often not kind towards innate autistic function, has been the greatest challenge in my life. For example, I suffer from hypersenses, that means I feel, I hear, I sense through touch, hearing, smells, light, images, much more acutely than the average person does. And not only do I sense more acutely, the effects on me can be extremely pleasant, on one hand, but also extremely damaging, painful and even crippling. For example, if the lights are too bright in a room that I enter and I have to stay in it for any amount of time, I develop painful migraines – headaches – I beomce short of breath, nausea even. Some smells that may be ordinary to the general public can induce nausea and unpleasant vomiting.
I think… yes, it is a wide spectrum, and there is a popular saying that if you meet one autistic person, you meet one autistic person. Obviously we share a similar paradigm, not just without the diagnostic manuals – there is more than one, but the DSM is the prevalent one – we do share a common neurological make up, and I think the difference between one person and another is not only our personality but how we are able to cope with living in a non-autistic world. And that varies. I feel, having met many individuals across the spectrum – non-verbal and we communicate via text only, and highly verbal people like myself where we can babble on for hours on our favourite subject – I think what we have in common is the desire for more empathy. Now that is an irony in itself, because there is this myth popularized by the so-called Theory of Mind experiment that purports that autistic cannot grasp (neurotypical) Theory of Mind, and therefore we lack empathy. That caused a furore, and I won’t go into it that, but I think the overarching common theme is that autistic people would like to see more empathy from the non-autistic social dimension for the autistic functionality. We do have empathy, and my research is about an alternative empathy, a parallel embodiment, a different way of being, and because we are differently embodied, we actually have a great deal of empathy, but the channels and the features of our empathic system differ from what is common. Therefore, we have been previously labeled non-empathic, because we deal with empathy in a different way and it manifests differently. So, you’re not looking for the same things, you don’t find it.
Autistic empathy tends towards the connectedness to the elements rather than a verbal-based expression. For example, if I am having a meltdown, I am very sensitive… to the light… I’ve entered your house and I’m your houseguest and your light is giving me a headache, it doesn’t mean so much to me if you came and sat beside me and said, “I am so sorry honey, I’m so sorry about how you feel”… and babble on into my ear about how wonderful empathic you are and then you kiss me and hug me… now, that terrifies me… even though I know you’re trying to be empathic. What would mean a lot to me, would be to observe me – maybe ask me if I am uncomfortable, or not ask me (but just) dim the lights, create an environment that is kind to my senses. That is, if you knew me. Do a little bit of research about who I am – I am very open about who I am. It means a lot when friends that I”ve known for years do a bit of research, read up, and then either talk to me about it or create an environment where I can be comfortable. Don’t invite me to noisy cafes, don’t berate me if I say I can’t come because I can’t face the bus ride. Little things help us to connect with you – many of us are hugely sensitive so we can sense your empathy just by the vibrations that you’re making in our sphere. It sounds crazy – it’s not a spiritual thing but a sensory thing. When the air is being disturbed, many hypersensory people can feel it. So, in the same way, if you’re making a difference in my sensory domain, we can feel it, we can feel your effort. Personally, I find I don’t get signals when I am looking in the eye of the person (with whom) I am talking. Because of my sensory challenges, I tend to want to try and focus on listening to what the person is saying to me – the verbal content of the communication rather than what’s in the eye – and for that, sometimes, I need to look at the mouth, because, if it is a very noisy environment and I am sensorially overloaded, I am trying to concentrate. So, looking in the eye is a distraction and I don’t get anything from it. I don’t get the nuances that some people claim to get – oh, they can see that you’re lying or they can see… whatever the nuances are, here I am, I am trying to listen to what you’re saying… verbally… speech… your words… so, I find it very difficult… It is easier to look down at my toes or some other object, and just strain to listen, close my eyes… or look at your mouth and try and lip read together with the sound that I am hearing. Now, I’ve learned to look in the eye as a social gesture, but I’ve had to practice. When I was young, I was told, “Look in the eye, you’re rude if you don’t look at the person in the eye.” So I practiced in the mirror, looking myself in the eye and tried to figure out, “What am I trying to say?” And I still can’t figure that out about the eye – but I’ve learned to train my eye to look in the right direction. It is taxing, because, then, you’re adding an extra barrier. It’s like trying to figure what I’m trying to say while waving a hand in front of me. If you tried that… even an ordinary person would be impaired! So, that’s as far as looking in the eye is concerned… And I feel it is not necessary. But a lot of these behavioral therapies and programmes are now forcing autistic children to look in the eye, to hug… hugging is another sensory aversion – some of us just don’t want to hug the bodies of other humans… but these programmes, to me, are aimed at making us conform so that the non-autistic world will feel better about our existence. I think that should be a serious consideration for every parent… to ask themselves… before you want to put your child in a programme: what are your goals? Is it for you – so you’re more comfortable with your child? Or is it for the good of you child?
And socially… I feel that a lot of the language – the pathology language – blaming us for social impairment … that we are socially awkward, that we are just ‘wrong’ socially… that’s because, firstly, we’re asked to function in a social system that is not our own… and I don’t see the reverse happening where ordinary people are asked to function in a social system that is kind to autistics. For example, you see ‘condemning’ memes on Facebook saying that when you’re at a café, you shouldn’t be looking at your tablet. “Talk! For goodness’ sake! There’s no wifi here!” That one is a very popular meme that I absolutely object to, because some of us just find it easier to ‘talk’ – to communicate – with our tablets. And the internet has been wonderful for us – autistic people – I converse with my friends, I form very close relationships using the written word. I have time to think about what I need to say, I don’t have to battle noisy cafés, cutlery being thrown around, the coffee machine screeching through my head, and trying to shout over everybody’s voice to speak to my friend. I can just sit there, and type into my tablet, or into my phone, or into my computer, and say exactly what I feel I wish to say, without all these challenges. So, the social system is a battle.
There is a misconception that people with Asperger’s or autism do not want to communicate with the rest of the world, we just want to hide in our little holes. I find that… um… I’ve met many people with who would prefer to communicate less than the average non-autistic person, but it doesn’t mean they do not want to communicate at all. And it doesn’t mean that people with autism or Asperger’s do not want to form close friendships. In fact, most of the complaints I’ve heard from young people with Asperer’s (especially among the young people) is that they cannot find close friends. And they’re desperate for close friends. They want to belong and they try all means to find friendships and a lot of times… even in my case … we fall into grave error: either we offend people because we don’t know what to do… it’s a system that is alien to us… or people with Asperger’s become too desperate and we fall prey to bullies and manipulators. That’s happened to me as well, because we so desperately want to conform. After a certain age, the people I meet become very anti-neurotypical – there are people… I mean, I’m not saying everyone, but from my experience, I’ve met young adults who then become very bitter – young adults with Asperger’s – become very bitter and very anti-establishment. And establishment to them means the neurotypical establishment, and yes… maybe these are the ones people observe not wanting to communicate, they just shut themselves in their rooms, never want to come out – maybe a part of them has given up trying. But I do think the majority of us really desire connectedness. Maybe not with two hundred friends, maybe just one person, or two people, because perhaps that’s all the individual can cope with. Because… with every interaction and relationship and connection, there are responsibilities and demands, and perhaps that individual cannot cope with two hundred friends. I have very very few friends, and I treasure them a lot, and I would do anything I can to preserve the relationships with the few friends.
Well, growing up undiagnosed… there were pros and cons … I didn’t have a label that spelt “Autism” or “Asperger’s” but I was an odd kid, so I had other labels. “Eccentric,” “weirdo,” some siblings felt that I was lazy, because I underperformed in school and there some activities that I could not cope with that I just didn’t want to participate in. So, the challenges of not having a diagnosis… was being told that I was wrong, that I was deviant… Having a meltdown in public, was labeled a tantrum. Even now, parents think that an autistic meltdown in a two year old is a tantrum. There is a huge difference, because in a tantruming child, the child wants something: “I want that ice cream if you don’t give it to me, I’m going to scream the house down!” You give the child the ice cream, the child stops. But in a sensory meltdown, the child is in a lot of pain. And if you are in a lot of pain and you can’t express it – an autistic child doesn’t understand why there is a lot of pain, the lights are too bright (I know that now, but I didn’t know that when I was two) … My mother used to take me to a wet market where they were killing chickens in boiling water, the smell was so overwhelming I’d have a meltdown. But then I was accused of tantruming because it’s embarrassing behaviour – adults are embarrassed – and so, I was punished. Severely. In a meltdown, the child is in pain, and so, once triggered, you cannot mitigate apart from taking the child or the person away from the trigger and into a safe, clement space, and then allowing the person to revive and recover naturally. There’s nothing you can do, you can’t offer ice cream, you can’t offer pocket money, you can’t offer anything, because the person is suffering. So, until the pain goes away, you have a meltdown in your hands. The only thing you can do is to remove the triggers. I grew up being accused of being bad-tempered, being anti-social, you know, a plethora of things. I couldn’t ‘behave’ in class because the classrooms were too triggering… the environment… the fans were loud, the kids were loud, the desks were screeching… so I was labeled the naughty child – I can’t tell you how many times I’ve been sent out of class and stood in the corridor…
I have been accused so many times of inappropriate behaviour. And a major one is that I “say things without thinking.” Now, actually, I say things after a lot of thought. But, it still comes out inappropriate to the neurotypical social system because … these thoughts are too honest. A major hurdle I had as a child with neurotypical social interaction is lying. So, we’re brought up… everybody tells you, you mustn’t lie, you must tell the truth in all circumstances… so then, what happens, mother brings along a friend who’s dressed in the newest clothes, and she asks you, “So honey, isn’t aunty pretty?” What do you do? Tell the truth – “No, I don’t like her dress, I think she’s ugly” – or do you say, “Oh, aunty you’re so beautiful!” Now, a neurotypical sister of mine, she mastered that art, so she was the favourite. Me, I’d just either say no, or just look away… I don’t want to look at you… the red hurts my eyes… or something like that. So, that is inappropriate, rebellious, whatever… As an adult, inappropriate behaviour would be, again, to tell the truth. “I’m sorry I don’t like your drawing, it’s ugly.” Or, “I don’t like your new girlfriend, I think she’s manipulative and I think she’s a bitch.” OK, that has lost me some friends. “I don’t like your new boyfriend, he’s a creep.” So, I’ve learned to mitigate that because I’ve learned that neurotypical people don’t like the bald truth. If the friend is very important to me, I’ve learned that you have to dress the truth a bit, in, like, fluffy clothing and then try and present it… and maybe… it’s like these little truffle chocolates, you know, you have to present it in a sweet way so that the person would bite into it and hopefully get the message embedded inside. That is a huge social hurdle, and something that I’m always conscious of. And not asking questions that are ‘inappropriate’ – like, too private or too direct – it is a constant challenge for me. Even now.
You know, I don’t demand to be the Royal Hermit in the Cave, although that was one of my ambitions when I was seven, I wanted to live in a cave and then I discovered they don’t have flushing toilets in a cave. So… I am social being, many autistics are social people, we just socialize differently and we appreciate it if you recognise the differences and discuss it with us. Sometimes, it is also very individual. Even non-autistic people relate with friends in a very individual way. Like, you may relate with one friend in this way and another in this way, so the same applies to us. So… I relate with Lucy differently, I relate to one friend and another… they’re all different… and I think if my friends can make an individual effort to find a comfortable space for our interaction, then to me, that is an expression of empathy.