Why we need to say goodbye to functioning labels

When I was a young girl in primary school I started going to this place on weekends called Byron House. Most of the other people there were boys and they liked to play chess, which wasn’t really my thing. I don’t remember anyone telling me why I was there. I don’t even remember what I did there although I’m fairly certain it didn’t involve playing chess with a bunch of aspiring grand masters! I found out later that Byron House was a program for gifted kids and I one of those. Apparently my IQ score in primary school was very high and my voracious appetite for books, love of writing poetry and interest in topics apparently more mature than my years put me in the gifted group.

Intellect is not a quality I care a lot about. I have enough of it that I can do all the things I need to but it is not the key part of my work. However intellect and giftedness in Autistic people – as well as others I suppose – can become a more curse than blessing at times, particularly when it joins that problematic concept of ‘high’ or ‘low’ functioning.

I have a friend who has two children who are Autistic. The older boy is similar to me in many was – extroverted, quick-witted, can do his school work without to much need for assistance or intervention. This young man has been given the ‘high functioning’ label. His younger brother is more introverted and doesn’t speak much. He has some more noticeably different behaviours which bring him to the attention of staff a school. This young man has been given the ‘low functioning’ label. My friend tells me what usually happens when educators and others meet her children: The older boy has very high – often unrealistically high – expectations placed on him, while his brother’s skills and capability is almost always ignored in favour of low expectations. The older boy gets little or no help even if he really needs it and his brother rarely gets the opportunity for stretching or taking on challenges. This is one of the many issues with the functioning labels applied to Autistic people and the expectations which often surround them.  Applying a functioning label can rob Autistic kids and adults of the opportunities and /or supports they need simply based on assumptions around intellect and ‘functioning.’

High and low functioning Autism are not actual diagnostic criteria within the literature. They are a sort of unofficial – and subjective – addition to the Autism diagnosis. Unfortunately they carry a lot more weight in society than they should. I am often described as ‘high functioning’. This is usually a shorthand for being verbally articulate and able to mix in non-autistic society, to study and work and so forth. If you look at me and my prodigious over-achievement of recent years, I am probably extremely ‘high functioning’ for any human being, Autistic or otherwise! However lives are not static. Twenty years ago I can tell you exactly where I was at this time of day on this date. I was in the management  unit at what was then known as the Metropolitan Women’s Correctional Centre in Melbourne: a privately-run hell where I engaged in all manner of self destructive activities which if I were an Autistic child in  school would have almost certainly have attracted the ‘low functioning’ label. This illustrates that functioning is a matter of time and experience and environment. I know certain people will say ‘but this person doesn’t speak. They can’t work, they are low functioning,’ The statement contains a lot of quite unhelpful, not to mention insulting, assumptions. There are a number of Autistic activists and advocates who do not speak. Their advocacy is no less valuable because their voice comes form an iPad or laptop. The notion that people who don’t speak must of necessity have nothing to say is offensive and just simply wrong. Historically the ability to speak using vocal chords and words has been used to signify intellect and selfhood. This needs to be addressed because it is incorrect and incredibly invalidating for those who use non-speech communication.

Another problem with the functioning label, aside from it being based in quite a narrow notion of ‘function,’ is that is sets out a sort of path for people to take. It predicts what will happen in a person’s life and often this is not helpful at all. I have a friend who is a professional designer and is Autistic. He attended a specialist school for most of his primary years. His parents were told he was ‘low functioning’ and would not cope in mainstream education. Preferences and arguments around types of schooling aside, this person who was given the path for ‘low functioning’ in fact went to university and proved all of those stereotypes and assumptions wrong. This makes me wonder how many other kids and their parens are given the ‘path’ which in fact will result in them not leading the fulfilled life they otherwise could? Functioning labels come with a whole load of assumptions and in my experience assumptions and Autism are a dangerous mix often resulting in people being denied rights and opportunities.

I guess these issues relate to Autistic people being held up against measures based in non-autistic experience and values. They essentially say ‘how normal are you?’ They can either throw people in the deep end minus any support because they are apparently so ‘high functioning’ or they can result in a child and their parent/s having a predominantly pessimistic view about their future. I would like Autistic individuals to be treated on their own merits and experience, Some blanket functioning label based in a limited understanding about Autism not much use for individuals. We really need to stop using these functioning labels as hey cause a lot more harm than good and are essentially meaningless.

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I had to add that my blog was selected as one of the 33 best Autism resources on the internet by The Art of Autism. Cool.

 

Jeanette the hydrangea bush: psychiatric labelling and Autism

I wrote this on social media after seeing my very nice and respectful psychiatrist last week:

Saw my psychiatrist- additional medication prescribed. He also thinks I have bipolar. Meh, another diagnosis….

A friend asked if I have schizophrenia (my most commonly-occurring former diagnosis) or bipolar and I wrote this –  Probably an autistic variant of one or other. Hard to fit with non-autistic mental health labels when Autistic experience – and presentation – tends to be different. Like all diagnostic tags the mental illness ones have two purposes – accessing assistance / support and identity. I don’t need a specific identity around mental illness – happy just to identify as a person with mental illness given the overlap between the conditions. And either schizophrenia or bipolar allow me to access the same supports and meds so I don’t mind one way for the other.

I think this is quite interesting, both in terms of my own mental illness journey but also, I would imagine, for others on the Autism spectrum. If you talk to Autistic people who also have a mental illness – and even some who don’t – they will often have similar experiences to mine around diagnosis. The Autistic person with mental  illness seems to present a little differently to the non-autistic person with the same mental health condition. Unfortunately a lot of psychiatrists and other clinicians seem to want to fit the person into the diagnostic label rather than observing the person and finding a ‘label’ that fits them appropriately and allows them to access support and the best interventions to address their mental health issues.

Since 1995 I have had the following mental illness labels:

  • Schizophrenia (and autism)
  • Schizoaffective disorder (and autism)
  • Atypical psychosis (and autism)
  • Psychotic depression (and autism)
  • depression (and autism)
  • bipolar (and autism)
  • Borderline personality disorder (and non-autistic).

You may notice something about this list. All the conditions except one were diagnosed by psychiatrists who had enough understanding of Autism to add it into the mix of my various attributes. The only one label which does not have me as Autistic is the one where my Autism and mental illness symptoms were completely misunderstood. I think this one might warrant a bit of a case study.

In 1996 I became very unwell with psychosis and depression and found myself in the psychiatric hospital near where I lived. I was there for a month and was then discharged, probably a bit earlier than I should have been. I was still very unwell and a few days later was sent to a different psychiatric hospital in the same region. The chief psychiatrist here was almost a parody of the worst side of his profession – he was arrogant, had very little empathy with his staff and had an unusually adversarial approach to people with mental illness. A nurse who trained in this hospital related that this chief psychiatrist thought people self-harmed ‘to get attention,’ despite this rather judgemental piece of reasoning for self-injurious behaviour having been largely discredited, even then in 1996. He was also quite misogynist and almost every woman in the hospital was diagnosed wiht borderline personality disorder. Anyone who has an interest in mental illness will probably be aware of the fraught nature of the borderline diagnosis. It has been described as stemming from the view that women are histrionic and manipulative. All I know is that when I was given this diagnosis all the support and kindness I had previously from mental health clinicians turned into blame. My new diagnosis meant I was seen as being 100 per cent responsible for my decisions. I was told I was being manipulative and a bunch of other nasties, so my aggression – which almost certainly came from paranoia mixed with Autistic meltdown and which I would have given anything to learn how to stop doing – was addressed through legal sanctions rather than medical support. The scary thing – or one of many scary things – around the borderline personality disorder diagnosis is that it is a misdiagnosis frequently given to Autistic women.

Autistic women and our experiences tend to not be very well known in psychiatry, even now. A few of the features of borderline personality disorder are issues with regulating emotions and difficulties with your identity. Autistic women often have alexithymia. Somebody who seems out of touch with their emotions and then has a meltdown in response to emotional / sensory overload probably looks to a clinician like they have emotional disregulation. Similarly, Autistic women and people with borderline personality disorder both tend to have identity challenges. However for Autistic women these are more likely to be related to trying to be accepted by peer groups. To a outsider though, someone becoming a socialist and then  a born again Christian looks more like they have issues with their core identity, than than the probable reason an Autistic woman would do this – they don’t feel accepted so adapt to be accepted by whichever peer group will have them. So while the misdiagnosis of Autistic women with borderline personality disorder is understandable, it is also incredibly unhelpful. Mental health clinicians need a better understanding of Autism to avoid this misdiagnosis occurring.

While I say that  diagnostic labels are either for the  purpose of your own identity and accessing services, this is only the case for the person who has the diagnostic labels. For the rest of the world, those labels can carry a lot of weight. Having an inappropriate psychiatric ‘label’ can lead to a lot of misery and mistreatment.

The right label – or as close as possible to it – is very important for Autistic people and / or people with mental illness generally.

My parting  thought will be a reflection on a conversation I had in hospital a few years back, with a psychiatric nurse. The nurse told me about the psychiatrist in the USA who wrote the very first Diagnostic and Statistical Manual of Mental Health Disorders, back when being gay was in there as a mental illness, among other things that really didn’t belong.  The author of the first DSM was also a botanist. The reason he wrote the DSM – the manual including  all the mental illnesses – was that he thought it would be nice if human beings with mental illnesses could be categorised in a similar way to plants and trees. So the very nature of psychiatric diagnosis is essentially the result of a doctor who essentially thought I was the same sort of thing as a monkey puzzle tree, or a hydrangea bush. Psychiatric diagnosis  is  essentially a best guess based on an observation. The labels  – while they can be very useful when applied  competently – are just a way of grouping together individuals with similar experience. There are still around 7 billion individual human brains out there, all of them different. Make use of your labels and put them to good effect but remember that the fact you are you is probably the most important bit.

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No empathy or no information? Autism and empathy

It is just after 7 pm on Autism Day (the United Nations one on 2 April). I have attended two events today, one a Yellow ladybugs art event for girls and teens on the Autism spectrum and their parents / grandparents / carers and the other a panel of clinicians which I chaired. I was very glad to be included in the panel discussion but it was quite challenging. I was the only Autistic voice on the panel and some of the clinicians held views I disagree with and / or find unhelpful. I am giving myself a metaphorical pat on the back for this one as I feel my chairing was positive and professional and I asserted the Neurodiversity / different not less / nothing about us without us sort of perspective quite well.

After the event I spoke to several of the audience members – many of whom were buying my books. One of the staff from Marymead who organised the event drove me home and I got talking to her and one of the clinicians, a psychologist just as I was leaving. We were talking about Autism and empathy (‘groan!’ I hear from lots of the readers). But the discussion was good as, among other things, I had a bit of an epiphany.

The thought I had has almost certainly occurred to someone other than me in the past. In fact I think Dr Wenn Lawson has a similar take but from a professional perspective.  Wenn is one of my role models and an amazing advocate for Autistic people the world over so I hope I don’t step on his toes in any way. I am not a clinician, I have no medical or psychology training but this was my thought on empathy which I certainly hadn’t understood before but which I think is worth sharing with all of you in blog reader land.

Autistic people are frequently told we don’t have empathy but most often we do. I think the issue is often one of receiving information. Imagine that Autistic people tend to struggle with decoding facial expressions and body language but non-autistic people generally do not. Imagine a non-autistic person sees their mum and she is scared or sad or happy but she shows those things only via her unspoken language – through her eyes, facial expression and body language. The non-autistic person would see their mother and probably understand she is experiencing whichever emotion and respond accordingly. Now replace the non-autistic person with their Autistic sister or brother. The Autistic person most likely does not see or understand the non-verbal cues. When they don’t respond in the way a non-autistic person would, they are told they lack empathy (insert ABA here presumably). But I don’t think this view is necessarily correct. The Autistic  person lacks the ability to pick up on non-verbal cues and KNOW their mother is experiencing an emotion. If their mother says to them ‘I am really sad because of…’ and they understand the verbal description they will probably respond with empathy and caring in their way.

So Autistic people are being painted as lacking empathy because they don’t respond to something they probably cannot see, understand or even be aware of – body language and facial expressions. I have heard a few clinicians and other professionals who work with Autistic people comment that they ‘lack empathy’ but they are also ‘very thoughtful.’ This is an apparent contradiction but I imagine the Autistic person in question may be thoughtful most or all of  the time, it’s just they are unaware of what the person they are with is feeling unless it is stated. It is like someone saying an instruction in Italian to someone who doesn’t speak Italian – they are not being thoughtless, they just don’t understand the communication.

Given that Autistic people often have alexithymia (emotion blindness) they may not understand when someone says they are experiencing sadness or anger  – or particularly more subtle emotions. This can once again result in the label of lacking empathy but is essentially resulting from gaps in the information that the Autistic person needs to understand what the other person is feeling.

I often talk about my own experience of cognitive empathy. That is, I can’t somehow emotionally pick up on what others are feeling but if they tell me or I have experienced a similar thing, I have a lot of caring and empathy. I think a lot of other Autistic people are similar to this. I made a conscious decision to be more caring and engaged wiht people when I was younger so I spent many years working out what different situations did to people’s emotional states and what worked best in response to that. In fact when I have taken EQ tests, my EQ (Emotional Intelligence Quotient) is off the scale. I think this is because I put my mind to building my emotional connectedness, so even though I have no idea what someone’s facial expressions are telling me and can’t feel many emotions myself, I have built a parallel set of emotional intelligence based almost entirely on thinking rather than feeling. As I often say in my talks ‘do what works!’

It is a bit much to accuse Autistic people of being cold-hearted and lacking in care if the information everyone else uses to build their own empathy is not available to us. Cognitive empathy is just as valid as the more typical emotional empathy. There is also intuitive or hyper-empathy which some Autistic people experience and which means they can pick up on feelings in people without seeing or speaking to them. Once again this tends to be misunderstood or dismissed.

Yup, as I so often end my blog posts, we are most certainly different not less.

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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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