The fraught nature of ‘beauty’

There are some unhelpful standards in society, from the impact of that loaded little question ‘so what do you do?’ to someone who is currently unemployed, to people judging the relative merits of potential employees based on how ‘ethnic’ their second name sounds. Along with these, one standard which has always bothered me is the idea of ‘beauty.’

Beauty is one of those binary constructions which exist in relation to its opposite. Beauty is opposite to ’ugly.’ You can find references to this ‘ugly’ all over the place. Assigning the label ‘Ugly’ can be a weapon used by people to  shame and belittle others – often by bullies or trolls. But there is a whole machine of beauty and ugly going on beyond one-on-one bullying.  Every supermarket has its fair share of magazines featuring the apparent standard for beauty. Most often those ascribed with ‘beauty’ are White, under the age of about 35, thin and wealthy. So that’s beauty apparently. Somehow we are encouraged to measure ourselves – and others – against this standard. Too bad if you are any race or ethnicity other than white, older than 35, full-figured, poor and a whole list of other things. Close to the top of that list, if not directly articulated, is the ‘disabled’ label and the ‘weird / different’ label. If you use a wheelchair or cane, have obvious physical differences such as a skin condition or an atypical gait or seem ‘odd’ or uncategorisable you are not in the ‘beautiful’ group.

Sadly all of that beauty stuff is complete bull crap and leads to  a lot of misery for a lot of people. I would like to do a little survey of my experiences of the beauty / ugly construction and how it is used to ‘other’ people.

Judging from photos, as a child and teen I was what would be considered beautiful by the standards discussed above. However I have never seen myself that way. Bullies constantly told me how ‘fugly’ I was all through high school. My apparently deficient appearance was linked to insults around sex. Strangely I was either cast as a ‘filthy whore’ and ‘slag’ or told I was ‘frigid.’  Apparently nobody would want to sleep with  me but everyone would. I guess bullies are good on double stands and illogical insults.

Sone 1995 I have been taking anti-psychotic medication and mood stabilisers for my mental illness. Anyone who has taken these meds will know they almost always result in significant weight gain. I am actually quite a sensible eater – small portions, lots of veggies, not much processed or ‘junk’ food….(and so here I am justifying myself to you  even in this article on appearance. This shame thing is pretty pervasive!) But over the years I have had a lot of attention focussed on my body size more than my attitudes and character. Someone even fat-shamed me in the comments on my TEDx talk! I had someone I barely knew insist that I should do their personal training program and then when I explained the reason for my weight gain, the person proceeded to gaslight me about my mental illness! Fat women over forty don’t tend to get much positive attention. I am lucky though – I have pretty much no body image issues. Fat-shaming me will result in me getting very peeved and calling out the person doing the shaming. It won’t result in me hating myself. I’m fat. That’s how it is. It is nothing to be embarrassed by or feel guilty for. If I didn’t take my meds, being fat would be the least of my worries!! I am healthy and it has been said a few times that I do the work of at least two people.

Scarily body shape acceptance is not the case for many other people. I have friends who have been fat-shamed while they are working very hard on recovering from an eating disorder. Horribly family members often seem to do this shaming. This act of trying to enforce a ‘norm’ of body shape can have disastrous consequences in this situation – fatal sometimes, for apparently eating disorders have the highest mortality rate of all the mental health conditions.

I have friends and colleagues with disability whose appearance / difference has resulted in a range of discrimination. I had a mental health support worker a few years ago whose face looks very different to others’ faces. Going out for coffee with her gave me a perspective I hadn’t seen before on ignorance and poor behaviour in response to a physical difference,  I saw people speaking to her as if she was a three year old child to people physically recoiling. She was a great mental health worker and really cared about me. I didn’t really care what her face looked like. Her face wasn’t helping me get through my mental health difficulties, her character was.

This is the problem or one of the problems – around a standard of ’beauty.’ It is meaningless. My face and body do not say anything at all about me. My mind, my character, my thoughts – those do.

I feel ‘beauty’ can be used as a weapon. It reinforces a whole load of unhelpful thinking around difference, disability, race, culture, socio-economic status, sexuality and gender identity.  These attitudes need to be challenged whenever they come up as they are completely contrary to inclusion and respect of difference.  To me beauty is what is in your mind and your heart. I know that sounds trite but it is correct. What your face and body look like is just that – appearance. This narrow ‘norm’ of appearance and being told continually what we are supposed to look like, how we should eat, what to wear etc etc etc is not good for identity and self-esteem.  For people who do not conform to the accepted ‘norm’ for whatever reason, these standards can be incredibly harmful. I guess the weapon to fight back in this battle is self-respect, loving ourselves and championing difference and diversity. Standing up for ourselves, our friends and strangers who are being victimised and shamed is also a great counter-attack.

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Why we need more than Autism ‘awareness’ … all year ‘round!

“Oh but Jeanette, don’t say you’re Autistic. You could pass for normal”.

“Do you live at home with your mummy?”

“I taught a kid with Autism….’ (proceeds to tell me how they physically pushed said Autistic student’s chin up to force him to make eye contact and thought that was perfectly OK even when challenged)

“That is so ret*rded…..’ (followed by continued use of the R word over several weeks and required repeated explanation of why that word is equivalent to a horrible racial slur)

“Gee Jeanette, isn’t it good how [insert child in family with many Autistic members] is so normal.’

“Wow, you go to work. That was really nice of your employer to employ you. You are really lucky they took you on’

“Gee, your’e Autistic? I didn’t even realise anything was wrong with you.”

“You shouldn’t say you are autistic – I mean, you’re very mild.”

All of these statements have been made to me, either about me or Autistic people generally. They represent varying degrees of insulting assumptions and disrespect.  Each of these comments really upset me but this is certainly far from the full list. Some of these statements have been made by friends. some by relatives and some by acquaintances who wanted to share their ‘understanding’ of Autism with me.

The worrying thing about these statements for me is that they are almost all unintentionally insulting. The people who said most of these things did not realise how difficult they were for me to hear and how invalidating and just plain rude they are. Most of the people saying these things thought they were connecting with me as an Autistic person. I don’t even think they are indicative of people being consciously ableist. Taking the into consideration, I feel these comments indicate we have quite a long way to go to raise understanding and respect around Autism. …

Which brings me to April. The whole focus on Autism ‘awareness’ troubles me. It seems to be a slightly more benign version of the sorts of comments listed above. What is awareness? I am aware of difference – there are many different groups and backgrounds people come from. It doesn’t mean I have any understanding of what people from the groups tend to experience or feel. For example I know there are people living in Mongolia. I am aware of Mongolians.  But if my understanding stops at awareness, that is all I know. If I expand my awareness a little I might discover that in Mongolia, the horse is a very important part of daily life for many people. I might see a photo of a yurt and a photo of someone drinking a fermented mare’s milk drink. Does any of that awareness tell me about what it is like to live in Mongolia? Does it stop me from being prejudiced against Mongolians in the unlikely event that the whim to do so takes me? No, not really. Awareness is not anywhere near understanding.

In terms of Autism, awareness is hardly a useful thing at all by itself. When I was an Autistic child at school, a lot of the bullies were very aware I was different. They used this to torment me. If all I asked for in life was awareness then I’d probably get bullying and some more of those rude comments above rather than anything helpful or inclusive.

Awareness is shallow.It is the top layer of understanding Autistic perspectives. To know and understand someone you need far more than just awareness.You will need things like understanding – knowing how a person thinks and experiences the world.You will want something positive too – we aren’t improving life for Autistics if our awareness and understanding results in dismissiveness, making decisions on behalf  of Autistic people with their input or invalidating us.

After understanding, the next thing you need is respect. We are different to the non-autistic ‘norm’ and that is OK. We often see things in a different way, we have insights and thinking which may be seen as atypical. Respecting that different approach and drawing lessons and value from it, that is a good thing. Then we need inclusion. To be aware, understand and respect is good but including Autistic people and their insights and experience is even deeper. Inclusion means people stop focusing just on the differences between us and instead work together as friends and colleagues.

The final element I see is love. To love someone – or beyond the individual to broader Autistic experiences – you see them as equal – if different – to you. You embrace them and their experience. Love has no us or them, love has no hierarchy  – no paternalism, no judgement. Love sees the essence of a person and values them. I don’t mean all non-autistic people should find an Autistic partner though! My notion of love in this example is beyond the sexual, beyond intimate relationships. Love to me is as simple and as difficult as seeing someone as they are, without judgement. A non-autistic someone – or organisation that someone leads or works for – who has all the elements of Autism awareness, understanding, respect, inclusion and love is very unlikely to make any of the statements at the start of this post.

At this time of year I reflect on the April Autism Awareness Day and Month. One thing I often see is that my Autistic friends and colleagues do not really enjoy April. A lot of the time the ‘awareness’ seems to not really include Autistics themselves and the things we have to share. So this April I will be adding understanding, respect, inclusion  and love to my awareness. If we are going to have a month for building all those things then Autistics will need to be involved in everything which goes on. I hate feeling excluded for something which s meant to be for me and other Autistics.

So happy Autism Awareness, Understanding, Respect, Inclusion and Love month – which is actually every month of the year.

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‘What does THAT mean?’ How not everyone ‘does’non-verbal communication  

When I was about seven I really got into reading. I could tell from the context of the books that other human beings were doing something I hadn’t come across or understood existed. They were communicating information through their body gestures, eyes and facial expressions. A couple of years later my mum came home with a book about body language. My family are all fairly Autie so I don’t think any of us had really paid attention to body language – ours or others’. At the time I had no point of reference for the differences I experienced around non-verbal communication. I just thought it was a skill I hadn’t acquired, like playing cricket or reading French.

When I was diagnosed as Autistic in 1994, at the age of 20 the most confusing part of the assessment was trying to work out a sequence of cartoons in which the characters did not speak. I thought the whole thing was impossible to decipher and that surely nobody else could figure out the story either. I couldn’t imagine how anybody could understand a narrative based on what the characters were doing if you couldn’t read the words they were saying!  When I was diagnosed I was told that non-verbal communication was something which Autistic people often have difficulty with.

I am now 42 and I still struggle to work out what people’s non-verbal communication means. I have an intuitive, empathic sense of people’s feelings which I often experience but it is based in feel and sense rather than looking at their face or body. I can only tell emotions and thoughts from looking at someone if they are actually crying (sad) or yelling (angry). Other than that your guess is as good as mine!

Even now after many years of trying to learn how to ‘do’ non-verbal communication I have limited skills at it. I can’t tell much from someone’s face mid-conversation. I can only really identify facial expressions when watching a movie many times over and linking what is happening in the film to the character’s emotions as expressed on their face. Symbols of emotions such as emojis are tricky too. I can only work out the smiley face, winky face, angry, crying and surprised emojis (so there are lots of smileys on my social media posts!) I am just as happy to have a conversation not looking at the other person although have learned that non-autistic people struggle with this so I look in the general direction of their face – when I remember! In terms of body language, unless someone is leaning right over me or physically assaulting me, I’m never going to figure out what they are expressing.

Like many other Autistics I am resourceful and quite intelligent so I can work out someone’s feelings through listening to what they say and ‘reading between the lines’ and understanding context. In practical terms at this point in my life, I don’t think my inability to understand non-verbal cues makes much difference to my ability to understand other people and where they are coming from.

Difficulty with non-verbal communication is not intentional on the part of the Autistic person. It is part of the wiring of our brains. Some people can learn to recognise different expressions and body language and others can’t. It isn’t necessarily a deficit in and of itself but it can result in some difficulties when communicating with non-autistic people.

There are some issues around not understanding or being able to interpret non-verbal cues. Autistic people can experience at best surprise and at worst outright discrimination due to their difficulties picking up on non-verbal cues.

Non-autistic people are the majority in terms of neurology. I will note that being non-autistic does not guarantee privilege or the ability to live well in the world. There are non-autistic homeless people. Non-autistic people can have mental illness or belong to another group which experiences disadvantage. But as he neurological majority, most non-autistic people do not question that their form of communication is the ‘correct’ one. They may be unaware that a large section of society interprets communication differently. So when faced with an Autistic person they can think we are very odd indeed. If your reality does not include knowledge of different ways of doing things, it is probably going to be hard to understand or respect their different approach.

Another issue for Autistic people is that we can feel our not understanding face expressions and body language is a fault or failing. I have certainly felt that in the past. It isn’t a failing at all. It is a difference. It is he result of part of how my brain is wired. It is a ‘failing’ in the same way my brown hair or the size of my feet is.  As Autistic people we can be criticised for things we can’t change which can make us feel self-conscious and that our reality is ‘wrong’. Many Autistic people try to look and act like non-autistic people in order to be accepted which can be really damaging to self-worth and a sense of identity. Different is OK. Issues do not really arise due directly to someone being different. The issues tend to arise when others either do not understand or actively discriminate based on that difference.

One good thing about being Autistic is that we can help others to understand diversity through talking about our own experiences.  By opening somebody’s mind to the idea that not everyone interprets non-verbal communication they way they do can open the doors to other understanding and inclusion.

I used to find my difficulties with understanding all those physical gestures and facial contortions which non-autistic people communicate meaning through quite disabling. However, like many Autistic people, I have developed effective strategies which means I can usually have some idea of what the person means. I have no idea what my now body language and face might be saying so I try hard to use clear verbal communication while talking to people. While my being able to use my ‘do what works’ skills to manage difficulties, it is also useful to build understanding in the wider world that not everyone ‘gets’ non-verbal communication so assuming they can will be unhelpful.

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Thoughts on privilege

I am socially privileged – a white, middle class, home-owning, Internet-shopping, credit card-toting person wth a university education. I struggle with reconciling my privilege with my work in Autism advocacy. I guess this post is my attempt at unpacking some issues related to concepts of privilege in my experience.

I wasn’t always privileged which puts me in quite an interesting position. In fact over the past 15 or so years I have gone from being disadvantaged across a number of domains – ex-prisoner, long-term unemployed, poorly managed mental illness, ableism and discrimination around autism, homelessness etc. Most people don’t move from that place to where I am now in terms of social perceptions, but I did.

I should just note that we are all human. We are all born, then we live and then we die. That’s it. Having power or money or influence does not excuse you from any of those three activities. Nobody is more important or better or more deserving of respect than anyone else. We are born naked and helpless, from the most disenfranchised person to the most powerful. Social standing and privilege are not a given or an absolute. They are a construction, entirely devised by people. A wealthy person is essentially no better, no more deserving and no more wise than a poor person. There are reasons why we have our different statuses but none of these are ‘real’.

The dichotomy of my own privileged status can result in interesting thoughts – I will find myself criticising someone for their middle class attitudes only to remember I share a lot of that person’s experience. Or I find myself trying unsuccessfully to convince disenfranchised people about my own ‘credentials’ around disadvantage. There is another complexity around this for me as well: While at this point in time I am privileged in terms of employment, ethnic background, income and social standing, I am also an Autistic woman who has a significant mental illness. When I am in the psych ward I can assure you I experience invalidation and disempowerment regardless of how much I earn or how many awards I have won! My privilege goes out the window as I become disempowered through social perceptions around mental illness and through that, people who are mentally ill.

Unlike me at this point in time, many people on the Autism spectrum are socially and financially disadvantaged. The employment participation rate for autistic people in Australia is a little under 36 per cent. Think about that and then think about how ‘employment participation’ is defined in the statistics: Employment participation means working for one hour or more per week and /  or actively seeking work. As such, that 36 per cent participation rate includes unemployed or underemployed people. Autistic full-time employees like me are a smaller percentage within a small percentage. A job is the passport for a future but many Autistic people – despite having the necessary skills and attitudes – cannot find work. A range of issues feed into and result from this. In practical terms it can mean things like living in supported / crisis / insecure housing, having no choice in healthcare services or not being able to afford school supplies or clothes for your kids. It often means people are unable to acquire a timely Autism diagnosis for themselves or their children. Not having an accurate diagnosis means people are unable to access available supports and can also impact negatively identity. Unemployment and poverty are two of many disadvantages facing those on the Autism spectrum.

There is another measure of disadvantage which is known as intersectionality. Hopefully this example will help explain the concept of intersectionality if you haven’t encountered it before: I was checking my social media on the way home a while back and saw a complaint from a white, male admin for an Autistic-run group in the USA. He was complaining that ‘feminists’ criticised him because he had eleven other white, male admins on his group and no women or people from other ethnic or cultural backgrounds. This fellow commented that ‘Autism has no gender.’ I was furious and raced home to write a blog post on why Autism has a gender and a class and an ethnicity etc. Intersectionality means that disadvantages tend to compound other disadvantages and make life just that much more difficult. The experience of an Autistic woman who is a refugee is likely to involve disadvantage and prejudice based on more than her Autism alone. My American acquaintance was seeing the world through the lens of his male and white privilege and felt attacked by the ‘feminist’ because presumably he didn’t understand that he had privilege.

This brings me to what I see as the crux of the privilege issue. Privilege is often something a person is born with. It wasn’t intentional and they didn’t choose it. It becomes an issue only when the privileged person fails to understand others’ experiences who do not share their privilege or where they do not understand that they are privileged at all.  I tend to think it is more complicated than the equation privileged = bad, disadvantaged  = good. It is what you choose to do with your privilege and how you approach it which counts I think. Privilege in the form of influence can actually be a useful thing for an advocate to have, as people making decisions are more likely to listen to an advocate who shares some of their experience. While that is quite a distasteful thing for me to think in terms of my own advocacy, I know from experience it is true.I guess it is just an extension of doing what works to achieve an objective.

For me I think I can accept being privileged in some areas as long as I never, ever lose touch with how most people experience life. As long as part of my memory is still being powerless and disadvantaged, as long as part of me knows what it is like to not buy necessary medication because it costs too much, or to live in horrendous housing conditions but to be unable to move out because private rental is too much. As long as I remember bullying and abuse and times when I had no agency in any decisions about my life, I should (hopefully) be OK. Hard things to reconcile but it is always worth assessing and reflecting on where one fits in the world and how to work towards making the world a better place.

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This apple and its lovely tree – thoughts on my mum

The image which accompanies this post is of my mum and I on Tuesday night at the Australian Capital Territory Woman of the Year awards. I was a finalist due to all those positive things I do as part of the Autistic community these days. I think this image is my all-time favourite family photo. It is spontaneous and, despite my difficulties reading facial expressions, I can tell it shows a mum and daughter who love each other very much.  And we do. A photo is a snapshot of time – a moment frozen for eternity. My studies in Fine Art in a distant lifetime focussed on this potentially morbid aspect to photography so it is something I often reflect on in the age of selfies and people capturing seemingly every vaguely significant moment of their lives.

The photo of my mum and I is telling as it is a moment of time at one end of a difficult road. Twenty years ago there would not be such a photo, and not thirty years ago either. Even the photos of my mum holding a little baby me show a young woman looking excited at the prospect of the life of the little daughter in her arms and me showing a scowl beyond my years. Almost as if my little self impossibly had access to some inkling of the trouble she would know in life.

These days I am an overachieving role model, an example of the kinds of things parents might like their Autistic kids to accomplish as adults. My mum was delighted to share the awards night with me on Tuesday but her parental pride has a more difficult  origin,  for my teen years and twenties were hell for all my family.  I made poor choices over and over, I was incredibly self-destructive. At times I lost contact with my parents for months and they thought I might have died. Even as a young teenager I was quite broken and family life was less than pleasant. For a while in my teen years my Autistic passionate interest was nuclear war, followed closely afterwards by communism – no ‘My Little Pony’ or passionate internist in art for me! I was quite a brilliant but very unhappy person.

I gained my autism diagnoses as an adult. This meant that I went right through school with no diagnosis. I was unaware I had an Autistic peer group and I felt very alone. But I’m not talking so much about me in this post – just setting the scene via my difficult experiences and pain. This post is about my mum and, through her example, some of the experiences shared by many Autistic parents.

My mum gained her Autism diagnosis just a few years ago as an older adult. Autistic parents up until very recently have been an almost invisible group. In my own advocacy career, when most professionals used to mention ‘parents,’ the assumption was that those parents were non-autistic and their kids were Autistic. In recent years I have met a large number of parents – and particularly mums –  who have sought an Autism assessment for themselves after their child or children were diagnosed. They have seen themselves and their own childhood in relation to their own children’s Autistic experience and have wondered if they too belong within that group which their children also inhabit.

When I was about five I went to a therapist because I was aggressive at school. As I remember it I struggled with change and the unpredictability of the other kids and responded by hitting out as I didn’t know what else to do. As I understand it (which may be wrong – I was five after all!), the therapist suggested to my mum that maybe I was some sort of atypical autistic person. I don’t think that this was investigated any further. I don’t quite know the reasoning but having read about attitudes around Autism in the 1970s, the prevailing view from clinicians was that Autism was caused by cold-hearted ‘refrigerator mothers’. I can only imagine my mum wanted to steer clear of that! I feel that we were quirky family but a largely happy one when I was little, but my parents’ unconventional parenting was viewed dimly by those judgemental types who think it’s OK to give unhelpful and unsolicited advice to people.

But there was not much reason to judge my parents. They did some things well, others not so well and did the best they could – like a great many other parents. When I was a troubled teenager I remember talking to my mum almost every day while she was ironing. (My mum loves ironing things – or at least she does it a lot. I assume she enjoys it). No topic was barred. I could say or ask anything of my mum and she would respond with a loving, respectful, truthful answer. She was there for me even into the darkest places, when I was a prisoner both in the physical and emotional sense. She never let go of me and she never stopped loving me, even when it must have been very difficult. Her love has always been this tangible thing, like another character in our shared story.

As I have changed my life over the past 17 years and gone from desperate to fulfilled, she has been there. When I was unwell with significant mental illness between 2010 and 2013  she came and saved me and made sure I got care when I needed it.

In conventional terms my mum is odd. We had no Santa Claus, Easter Bunny or Tooth Fairy at our house but we had a fierce and strong love. My mum did a lot of things  which people might think are odd – we used the same piece of glad wrap on our lunches all week because of my mum’s respect for the environment and if I was sad as a kid she would read to me from the Book of Revelation in the Bible – but she was just the best mum ever and we were quirky and different together and we still are.

I attended a conference a while back and a very young, fresh-faced PhD student presented her findings on Autistic parenting. She concluded that Autistic parents of Autistic kids are often absolutely amazing parents because they understand their child better than most and can advocate for them from a position of knowledge and understanding. I stood up and made a comment at the end of the talk. I said I have an Autistic mum and she is the best parent I could ever hope for. That my mum and I share a unique and amazing bond. Everyone clapped and I just mentally sent all that applause to my mum.

Some Autistic women’s self-advocacy organisations which are  doing great work include:

Yellow Ladybugs – http://yellowladybugs.com.au

The Sisterhood Society – http://www.thesisterhoodsocietyaustralia.com

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Do you see what I see? Navigating the non-autistic world

Most people experience the world through a bunch of different ways of ‘seeing.’ They see subtle facial expressions and nuances in a person’s body language. They see the hidden meaning within a conversation. When they see faces of people they have met before they register that person’s face as a unique set of features. When they reflect on their inner world they can feel and articulate different emotions. They are aware of when there is some kind of pain or physical discomfort. They know if they are sick and when they are sick they can usually pinpoint which part of the or body the unpleasant feeling or pain is in.

I can’t really do any of these things. Autistic people have our own ways of ‘seeing’ which tend to differ form the non-autistic ones, but we usually spend a lot of time with non-autistic people and we can feel our different vision is somehow wrong. It isn’t wrong, and it is vital to keep our pride in who we are and respect for our divergent identity. However, I have found that navigating he non-autistic world often requires some understanding of their kinds of vision.

Over the years I have improved very slightly at these things but those forms of ‘seeing’ are mostly beyond my knowledge.  Many of my Autistic friends share this difficulty in seeing things like emotions and facial expressions and faces. One of the most difficult things is that non-autistic people often have no clue that anyone in the world doesn’t see things like they do.

If I look at my life, I have done quite well in my chosen areas of work and socialising than one might imagine was possible. But this is a learned experience. When I was younger I was completely baffled by the world. I saw a different picture to that of others around me. On some level I was aware of this. As a child I worked out that there was meaning in eyes and facial expression by deducing it from descriptions in novels.

I struggle with things which many would take for granted. A practical and rather yicky example of this is that I didn’t work out until I was in my teens what the sensation just prior to vomiting felt like. I apologise to may dad’s car/s. In fact my mum tells me that if I said I didn’t feel well as a child it meant it was probably something serious as I could never work out what feeling unwell felt like.

In my twenties my inability to see my emotions led to some very dangerous places. I was traumatised by various events when I was twenty-one so self medicated with drugs. When I was sober I had no control over what came into my mind but I knew exactly what being stoned felt like so I associated being stoned wiht ‘safe’ feelings. Drug use combined with anxiety about my impending eviction and homelessness meant that I developed a mental illness that I still have 22 years later. But had you asked me how I felt the day before I went to hospital to gain my schizophrenia diagnosis I would probably have said I felt OK. I was completely unaware I was unwell.

Looking at my issues with seeing various things others seem to find glaringly obvious it surprises me that I managed to function in society at all. I find it hard to unpack a journey over time, to understand how I used one skill to scaffold another and move into a more fulfilled and pleasant place. I know that I did because I am in a different world to my teenage and twenty-something self. I know a lot of other autistic people who share some or all of my difficulties in ‘seeing’ what is apparently obvious to others and are living the sorts of lives they want to.

It can definitely be done because it has been done many, many times over. There is that school of thought that suggests Autism is of necessity a deficit and that Autistic people will never manage to do, well, all the stuff that a lot of my Autistic friends do!

I am deliberately using the motif of seeing in this post. The reason for this is that if a person has a vision impairment they will use means other than seeing to navigate their way through the world. There is a ‘deficit’ which is compensated through strategies other than seeing visually. I can’t speak for everyone here but in my case I have also used my own means and ways to navigate a world much of which I can’t ‘see’.

I think each of us probably uses a slightly different set of strategies to navigate the non-autistic world. My straggles have changed over time as my life has changed. The main approaches I use now are:

  • to be upfront about my Autism, This means people aren’t seeing an inexplicably strange non-autistic person. It adds to their knowledge of me and gives them the opportunity to ask me questions if they are unsure of what I do or say. Knowledge is power – and sometimes that knowledge might just be that I struggle with certain sounds or smells.
  • I am very fortunate to have quite an incisive intellect. I can deduce what is happening through context, even if i don’t ‘see’ it. This is particularly evident when I don’t recognise a face or in being able to find out what emotions a person is feeling and why.
  • I am kind. This is not just a random attribute. I choose my character in about 2001 as I didn’t like who I was back then. Being kind and generous was a choice. One benefit of this is that people tend to be more ready to listen and understand an odd but kind person.
  • I trust the judgement of others when I know my own judgment might be off. Sometimes this involves some discussion.
  • I love and value myself as I am. Just because I don’t ‘see’ everything going on around and within me, I am still a person who aims to be generous and helpful who is quite good at writing and lots of people say my words have helped them.

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