I don’t need fixing, thanks

In my understanding, Autism is a neurological difference, a divergent way of viewing and experiencing the world. Autistic people are Autistic for their whole life. It is an integral part of us. Autism is viewed by different people in a variety of ways, from something deficient and in need of ‘fixing’ to a strong and inclusive identity.

I am an Autistic woman. I do a lot of responsible, high level, apparently impressive things. I work full-time in a professional role in Government administration. I write books about Autism and other things which people read from time to time. I have represented as a self-advocate in all manner of forums. I have bunch of awards for leadership and community service and lots of other cool stuff. I am an Autistic woman. I have a long list of things which make me different and unusual to many people. This does not stop me from doing all the various things I do.

As other Autistic people often do, I stim, I have passionate interests which I am absorbed in and which could be described as obsessions. I have meltdowns, I can get very anxious and worry and catastrophise at times. I have eaten the same evening meal at home since 2013 (fried rice with veggies and egg – I know you might ask. And it’s yummy and has gained the term ‘Jeanette fried rice’ with some of my regular visitors). I never make eye contact and instead look at the forehead just above the eyes. I have no understanding of human body language or facial expressions. Unless you are visibly crying or say ‘I am upset’ I can’t pick it from just looking at you. My cat is the most important person in my life. I talk loudly and sometimes miss the thread of the conversation. I wear all sorts of things which people say are funny. And I don’t mind any of this. It is me. I have achieved all of my various exciting things as this quirky person.

So this is why I am sad when people try to ‘fix’ me or to ‘fix’ any other Autistic person. In my mind, if things related to your Autism causing harm or danger to you or others then they need to be addressed but if the only issue is that you don’t look or act like the other non-autistic humans, then I feel the lesson should be about others learning to value and accept you as you are rather than nit-pick about meaningless differences.

Take the making eye contact issue. So many Autistic kids are told to look people in the eyes. Almost all my Autistic friends have described what this feels like. It is different for everyone but it tends to be a really unpleasant and intense thing. One friend talks about making eye contact as being like to laser prongs boring into her eyes, physically painful and overwhelming. Another said it is like laying her soul bare. For me, eye contact feels like I can see into the person’s very essence and being. I feel trapped and lost. I very rarely make eye contact by accident and avert my gaze as soon as I can.

I met a non-autistic former teacher once who proudly told me she had taught a  boy on the Autism spectrum who was about 11 years old. She said he would look at his feet when speaking to her so she described physically putting her finger under his chin and literally ‘lifting his gaze.’ I was tempted to do this to the former teacher to see how she enjoyed a physical invasion of her space. I didn’t because I’m very nice but I was really upset to think of this happening to some young boy.  This sort of thinking around eye contact, particularly with children on the spectrum, is sadly very prevalent. The thought is that eye contact is some kind of basic means of communication and if you aren’t doing it, you are communicating ‘wrong’. This is untrue. Eye contact is not universal. Many cultures – including some Indigenous Australian cultures – see eye contact as invasive and aggressive so avert their gaze out of respect.

This example comes down to the very basic notion of respect and understanding. Autistic people – and particularly children – are being forced to do something largely unnecessary and which is often incredibly unpleasant for them because their ‘different’ is viewed by many as making them ‘less’ .

Some ‘treatments’ for Autism involve modifying apparently ‘problem’ behaviour. This often includes things like stimming. If you are unsure what stimming is, it is described as ‘self-stimulating behaviour’. It is often a self-soothing technique and is different for each person. Some people – like me – have a lot of sensory seeking stims. Looking at shiny paper or colourful art – or as most people who know me would know, colourful jewellery, shoes, clothes and wigs. My other stims are physical ones – I wiggle my fingers when excited and clap my hands once or twice when nervous. When I am about to get up on stage for a presentation I often tap my hands on my thighs a few times to get ‘in the zone.’ None of these things are hurting anyone but they are helping me to process emotions. Some  ‘therapies’ for Autistic children try to get them to stop stimming. I am actually not 100% sure why this is but I imagine it is because the behaviour looks odd. Some people might argue that stimming or looking visibly different is a cause of bullying. Oh dear. I think we need to go back to our human 101 class and understand the somebody ‘looking weird’ is not actually doing any harm. If a bully targets them, that is the responsibility of the bully, and presumably those who helped show him or her that different and weird deserve abuse. And stimming for autistic people is often a very effective de-stressing and de-escalation strategy, helping them manage life better and avoid meltdowns. To take that away from someone and tell them it is wrong and they need to stop doing it, is pretty cruel and unhelpful really.

We would be so much better off to try to make the world more understanding and respectful of difference rather than taking away people’s strategies and making them look at someone in the eye. Teaching Autistic people to be ‘less autistic’ is incredibly unhelpful and mean and invalidating to the autistic person. They will always be Autistic. It would be some much better to teach them to respect and love themselves rather than berating them for stimming and other ‘odd’ behaviours.

I’m going to finish off with a bit more of my experience on this topic. In recent years I have been told to ‘learn to manage your emotions’ (in response to me using strategies to de-escalate what was looking like a massive meltdown in a setting where meltdowns would have been very damaging to my reputation). I have been told that ‘you shouldn’t say you are Autistic. You could pass for normal,’ and that old chestnut ‘You shouldn’t talk about Autism. You are very mild.’ So basically if I do the social chameleon thing and try to look more neurotypical I get dismissed and gaslighted and if I show just a little of my challenges with overload I am seen as unstable. Thankfully most people in my life at the moment understand all the things discussed in this post. But there are still kids and adults suffering just because they are meant to ‘be less Autistic’.

And you know what? Nobody can ‘be less autistic’ or ‘be more Autistic.’ We are who we are and that is OK.

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6 thoughts on “I don’t need fixing, thanks

  1. Thank you. As a neurotypical parent of an autistic son, these name the words I want to say. People keep acting like the feel ‘sorry’ for us or concerned with our hardship. Yes, parenting an autistic child is brainstretching for me because I have to try to understand a way of thinking different than my own. Yes, there are many difficulties in helping him learn to read the social cues he needs and function in a world that is not designed for him and is prejudiced against change. But he has so many other strengths other children don’t have and parenting any child is hard. If he were nonverbal, I would find that more stressful because I would worry a lot about how he could communicate his needs. Anyway, I hate the trend to “cure” autism. Your delineation of ‘harm’ is great – if a person has symptoms that cause them or others harm, we should try to treat that or teach coping mechanisms to avoid it. Otherwise leave it alone.

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    1. Lisa, your child is so fortunate to have you. I am an autistic woman with one confirmed autistic son and another suspected autistic son. I cannot imagine having a neurotypical child. I doubt I could cope, so I think it is marvellous you are reaching out to grasp the rich world of your child.

      My mother doesn’t accept too readily that I am autistic. She wants her masking, ‘good girl’ back. She failed to notice/care/realise I was dying under the effort of being a ‘nice’ girl. Your child won’t have to deal with that, and I thank you for accepting your child as he is. I imgaine it is tough at times, but I can assure you that your child is grateful for your efforts. 💖

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  2. Hi Jeanette
    I think we use “autism” to mean different things.
    As I understand it, “autism” or “autism spectrum disorder” is described in a manual of disorders. The term describes observable behaviour, thought to be due to neurological differences, that is dysfunction for the person in their environment.
    I am not aware that the term is formally applied to people with different of unusual neurology. I understand the term “neurodivergent” has been coined to describe that group, though I am not aware of any formal recognition of the term.
    Many in my family are neurodivergent, and proudly so. I regard myself as neurodivergent; and have done so from an early age … though I didn’t have a word for it until recently. My neurodivergence is a very powerful asset for me: it shaped my career and my life generally.
    My son is also neurodivergent and he is also quite autistic. He needs a lot of support to function in mainstream and supported settings. Sometimes his behaviour and understanding need to be “fixed” if he wants to continue accessing those environments.
    BTW, he tells us very clearly “I want to be good”. He was never taught to say that or anything like it, it is what he wants.
    It is my understanding that “autism” is disordered behaviour, probably associated with or resulting from a form of neurodivergence. There are several strategies for addressing ASD. They include:
    * adjusting settings where disordered behaviour emerges (which includes getting communities to accept and embrace more divergent behaviour – this approach stops a behaviour from being disordered/dysfunctional)
    * avoiding particular settings, parts of settings or antecedents where disordered/dysfunctional behaviour is likely if it is reasonable to do so
    * teaching appropriate behaviour to replace disordered/dysfunctional behaviour (that is, “fixing” some autistic behaviour)
    Note that we all expect neurotypicals to fix their disordered/dysfunctional behaviour.
    So, I think that some disordered/dysfunctional behaviour can and should be “fixed”. I don’t think all of my behaviour is part of me … I change my attitude to things/people and make choices about how I behave (this may be easier for me than it is for some other people).
    I think we should think very carefully about choosing to “fix” behaviour, and recognise that “fixed” behaviour is functional, not necessarily “normal” behaviour. Other approaches to specific behaviour are often better – such as acceptance and avoidance.
    I think some people learn functional behaviour and how to manage and their negative aspects and adapt to their neurodivergence … they live independent and fully functional lives, so they should lose the ASD label. I have friends like this.
    We may not agree on what the term “autism” means. I expect we agree there is no need to fix behaviour when another approach is more effective. And that replacement behaviour should be functional, it does not need to be “normal”.

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    1. Thanks Bob,

      I actually agree wth you, I think you may have missed the point of my post a little I was not saying every behaviour an autistic person – or any human being for that matter – does need to be addressed if it is problematic. What I was saying was that if a beaviout is just ‘odd’ or unusual it doesn’t need fixing but needs understanding around diversity. I would have thought that is fairly clear from what I wrote

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