Gifted? No. Just my way of communicating

There are many things that I enjoy doing. I am good at some of them and less good at others. There are two things in my life though that I have never learned how to do but which come as easily and swimming does to a large goldfish. These things are writing and public speaking. Obviously as an author and autism advocate they are quite useful skills to excel at.

As a child I struggled to know anything about the people around me, especially children of my own age. Adults were safer. I could understand adults because they gave dear instructions: ‘Jeanette, don’t do that to your brother!’; ‘Jeanette, clean your teeth!’. No subtleties or nuances there. Nobody was trying to confuse me or manipulate or tease me using such horrible things as sarcasm. Children were horrible as far as I was concerned. You never knew if they liked you. Even if they said they liked me one day they were just as likely to hate me the next. As a teenager it was even worse. I was this open, honest Aspie girl in a world or bitchy, fickle teenagers. At least if the boys bullied you they’d be upfront about it – pull Jeanette’s hair, chase Jeanette with a spider, call Jeanette names. There was a strange logic to it in which I had a clear – if not very edifying – role. The girls however, were a totally different story. I still don’t know how teenage (non-Autistic) girls operate and feel anxious in their company.

So what did little honest, open Jeanette do to feel she belonged? I read. And read. And read.  Books were my friends. The characters within them my peer group. The characters in books made sense. The author was usually kind enough to explain their motivations and some kind authors even explained what was going on with such strange and alien things as facial expressions and eye contact. Oh how I loved those authors.

As I grew older and gained an Asperger’s diagnosis I discovered that I did not ‘get’ about 80 or 90 per cent of the message when people spoke to me. I felt cheated. Neurotypical people understood a whole load of information that I was missing. And I could’t learn how it worked, no matter how many times I watched ‘Lord of the Rings’ and focussed on the actors’ facial expressions. Somewhere along the line I wrote a book – My first serious piece of writing ever and it was accepted to be published. ‘You’re gifted’ said people. People told me how clearly I communicated through my writing. I joined the public service. ‘Your emails are fantastic Jeanette’ said a boss. ‘You communicate so clearly. I wish the other graduates were as good as you.’

Some time – and more books – later, I realised that my apparent ‘gift’ of writing was simply my way of being clear through writing so I didn’t need to talk to people face to face and know that I wasn’t communicating the way most people did. My public speaking was the same. If I were to only get 10 per cent of the meaning of conversations, I was going to make sure that everyone understood what I was saying. I have learned over the years to convey meaning through what I write and what I say without the need to eye contact, facial expressions or body language.

So no, I’m not gifted. I’m just Autistic, my childhood friends were authors and I want to communicate with you. Which I suppose is a gift of sorts.

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‘Don’t play with those Catholics!’ – embracing the ‘other’

I read an interesting biography of Scottish Comedian Billy Connolly a few years ago. The author – Billy Connolly’s wife Pamela Stephenson – describes Billy playing with some kids in the street when he was about five years old. The playmates’ mother apparently stuck her head out the window and yelled ‘don”t you play with those Catholics!’, giving the future funny man a fairly stark view of ‘othering’ and prejudice.  People do this so of things with every possible attribute or quality, be it religion, ethnicity, cultural background, gender identity, sexual preference, disability, employment status, social class or even musical taste. We humans tend to form groups and exclude others. We look out at those who are not like us and see them as different, as ‘other’ to us. This exclusion can lead to extreme behaviour in some cases, such as racial vilification, violence or extremism.

As a child I didn’t really know much about these things. Like many children I saw myself as essentially the same as others. My best friend in the first years of primary school was from a Jamaican background. She had beautiful brown skin and amazing curly hair. We both wanted each other’s hair  – apparently my straight blondish locks were as thrilling to my friend as her tight curls were to me. I never had any concept that my best friend was not the same as me in any fundamental way. We both enjoyed drawing and chasing each other around the schoolyard. We had the same accent, lived in the same English village and loved making up games together. Sometimes my classmates – usually the older kids – would call my friend names. They said she was ‘black’. I told them that this was silly. I really had no concept of prejudice based on someone’s physical attributes such as skin colour. To me, my friend was no more ‘other’ than my own family were. She was my friend.

When I got older, I found myself becoming the other, for while primary school had been relatively benign, at high school I learned that apparently I was different. People picked on me, teased me for everything I did and said and was and bullied me. I was the least popular kid in the school. I wondered what was different about me. I couldn’t pick it out. I didn’t hate the kids who hated me. Surely I was just like all the other kids, but no. I was told that I was a swot, nerd, weirdo, and worse. I was teased for sexual things which I didn’t even understand. I didn’t know how anyone could tell that I was a ‘slut’ when I had never had sex. Life as the other was not very fun.

Years after the hardship of school, I discovered that I had Asperger syndrome. The reason I had been seen as ‘other’ at high school was almost certainly related to this. Being Autistic was amazing. I had an identity. There were people like me. Suddenly I was in a group that made sense. One thing troubled me about my new identity though and that was that some people ‘othered’ non-Autistic people. Not in a bullying or aggressive way but most certainly in terms of ‘us and them’. These people talked about ‘neurotypicals’ – people without a diagnosis of Autism. At first I thought this was great but then I started to wonder. For ‘neurotypical’ just means non-Autstic. That is, lacking in just one quality or attribute. The idea that neurtotypicals were a privileged group, as some people implied, seemed very foolish. I mean, one can not have Autism but have schizophrenia, or be homeless or unemployed. The main difference between them and me is that hey don’t share one single attribute – that of Autism. Certainly Autism is a fairly significant part of who I am but I would prefer to focus one what I share with others rather than what makes us different.

I prefer to see our similarities and what we share rather than the things which ‘other’ us from other people. It’s all very well to own one’s identity with a sort of fierce pride – thats fine and I understand it and do it myself from time to time. But I don’t want to exclude people because they are different or minimise their experience. Young children as much less likely to ‘other’ one another I find. Those differences that adults often fixate on are unimportant. Kids can teach us a lot in this regard. And people who have different attributes to us can broaden our horizons and open up new worlds of knowledge and experience. We’re all people – let’s ignore otherness for a while and listen to different viewpoints.

I spoke at a conference last year and one of the keynotes was an awesome fellow called Patrick Schwartz. Patrick talked about working with people with different conditions and disabilities. Instead of saying ‘Michael is Autistic’ or ‘Trey has cerebral palsy’ he would say ‘Michael has as an attribute Autism’ and ‘Trey has as an attribute cerebral palsy’. Maybe we can look at others like that and see things which make them different from us as simply attributes. Works for me

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We’re all essentially the same and just a little bit different

A beginner’s guide to changing the world: Making it matter!

These days I find myself giving a lot of conference presentations. It’s always a little nerve-wracking and exhilarating when I am about to take the stage. To steady myself, I utter the mantra ‘OK, let’s do it. Let’s go and change the world!’ I should qualify this by saying that my audience is more often measured in numbers closer to 100 than 1000. I have never ‘gone viral’ anywhere and my TEDx presentation from 2013 has a modest 2500 or so views on YouTube. But the important point about changing the world is that often quality is better than quantity.

I was not always an incrementally world-changing, conference-presenting, Autistic overachiever. Twenty years ago I was a homeless criminal druggie messed up person who most people would have judged as being on a short path to an early death and shameful memory, loved only by my family (and probably only a few of them). Obviously something happened to change my life. Actually it was a few somethings. I found myself a recently-free woman in February 2000. I had decided that a new millennium should equal a new life – the only time I have ever made anything approximating a new year’s resolution. I decided I wanted to be ‘ordinary’ – the get an education, a job, a mortgage and a suit. But more importantly I decided to put back some good in place of the thoughtless and impulsive acts, the pain I had inflicted on those close to me and on the wider society. This was quite a challenge. I didn’t really know how to be ‘good.’ So I went back to my Sunday School theology from so many years ago. I understood the idea of ‘do unto others what you would have them do to you’. That seemed a good basis for ethics and morality. So if I was doubtful as to whether something was ethical, I would run i through the ‘do unto others’ test. If I wouldn’t want another person to do that to me, I didn’t do it. Surely this was something of a tenuous link to ethics but it worked for me. I didn’t know good and evil at first. I had little connection to other humans but this rather logical approach to ethics really did work.

So that was my first conscious effort to change the world for the better. As time went on I achieved more things than any single person should be allowed to. One of those achievements was to write an autobiography. At the time the book was released, people told me that it would help other people and make the world better for Autistic people involved in drugs and crime but this was meaningless to me. All I cared about was that I was an author and that little fact changed how I saw myself. I was still rather selfish and self-focussed.

Years went by and life changed. I don;t know where the connectedness came from but almost as if by magic I started to care for others. All that making myself ‘do unto others…’ now made sense to me in a moral way, much as others described that they felt. I wanted to help people. I wanted to change the world.It suddenly mattered that my book was helping people. I wanted to change the world. At first I thought I needed to have a huge audience. However, after observing my friendships I soon realised that the important thing is not to reach a lot of people, it is to reach people.

These days I spend a good proportion of my time trying to make the world better. I don’t know if I’ve somehow ‘cancelled out’ the negative acts of my past – I don’t really think that’s how it works. Whatever the reality, I feel that my past experiences have given me a huge drive and imperative to help others to avoid the kinds of disasters I found myself in when I was younger.

When I tell myself to change the world at conferences, it is a little tongue in cheek, but there is a lot of truth to it too. Life in the past twenty years has somehow become less about me serving myself and more about me helping others. And I love it. It’s almost addictive. I figure the main test we need to pass in life is to leave the world a little bit better when we depart than how it was when we enter. So lets’s do this thing. Let’s go and change the world!

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Me changing the world, just a little bit

Do you like me? Why nobody will be universally popular and why that’s OK

Most of you may know this, but I’m an Autistic lady with a mental illness. I have had a lot of people over the years be rude, abusive, bullying or just plain exclude me. As a young woman I was very insecure and wanted to live in a world where everyone liked me. Of course that is impossible but I certainly tried. I was the world’s most adept people pleaser and I learned to get on everyone’s ‘right side’. By the time I was in my thirties people did like me but often because I’d done everything within my power to get them to like me. I hated confrontation and I hated the idea that people might reject me. I was known for being thoughtful – but this was mainly due to the fact that, in true Autie style, I learned and memorised everybody’s likes and dislikes and put this knowledge into practice. I would remember how everyone took their tea or coffee, I would remember if someone mentioned what kind of music they liked and then play the music they liked when they came over. I was known as a very nice person but this was not a true reflection of my feelings or character – I was just trying to be popular.

Then I did something slightly foolish: I wrote my autobiography. This book set out some of my views, my likes and dislikes. It also very gradually and incrementally put me into the Autism world spotlight. People started to care what I thought. They would share my statuses on Facebook. People asked for my opinion. What on earth was I to do? What if my new friends disagreed with my opinion? What if I offended them? This is an ongoing issue as I am so geared up to be appropriate and do and say what will please others, I sometimes struggle to even know what I think.

Something happened today which prompted this post. I was on social media, as I often am, and I clicked on a link to a quite well-knwon Autism page. I was informed in no uncertain terms that I was ‘permanently banned’ from this page. I honestly could not imagine what I might have done to warrant such a severe sanction in Facebook land. I was also initially very upset. I felt rejected. I wondered what I might have done to offend whoever ran this page. I was fairly certain I hand’t argued with anyone from the page or said anything offensive. A number of my very lovely Facebook family responded when I posted about my disappointment to be excluded from the page. One of these people – a very wise and accomplished author and advocate whose opinions I value very much – suggested that it really didn’t matter what those people thought. I felt that this was good advice, not just for this situation but for life. This promoted these thoughts:

  • You can’t be liked by everyone. That is perfectly OK. I don’t like everyone so it makes sense that not everyone will like me.
  • I know that my own issues make me more prone to wanting to be liked by everyone but I can overcome this.
  • Rather than focusing on the people who don’t like me, I should instead be grateful and appreciate the friends I do have.
  • If people reject me it may be saying more about them than it is about me.
  • The other thing I’ve been thinking is that it’s actually OK yo disagree with friends. Good friendships can withstand disagreement and if a friend isn;t able to let  a point of difference in opinion exist between you and them, they may not be much of a friend.
  • It’s hard for those on the Autism spectrum and those with other conditions or differences to find friends, so the ones we have are very important and we don’t want to lose them. But I feel quality rather than quantity is the key factor in friendships. To me, a few close friends is better than a lot of people who don;t know you well and don’t value and know you.

So don’t be too upset when certain people reject you. You probably don’t want those people in your life anyway. And if in doubt, cuddle you cat or dog or other friend – they love you unconditionally. 🙂 JP

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Jeanette with a lovely friend who also happens to be a beagle

The semantics of respect – words can hurt you

I’m fairly certain that the other members of my family probably think I”m some kind of ‘PC thug.’ I’m seemingly forever picking them up on what I consider inappropriate language. Just recently I had a lengthy conversation with my brother about why the term ‘Siamese twins’ was somewhat problematic. I know for a fact that some of my family members think my concern with semantics is completely nonsensical and if their intent was not prejudice or discrimination then why should they worry about whatever words are acceptable at the moment?

The issue of semantics and respect is a very complex one. In this post I will attempt to make sense of some of the issues and present a case for respectful and responsive use of language.

I should start by saying that I am very keen to respect others from all backgrounds and communities. If I were to be seen as prejudiced or discriminatory, I would feel terrible. Respect is probably the top of my list in the elements of  communication and interaction with others. The key issue in what words are OK to describe a particular community seem to me to be whether or not that community has adopted the language themselves. This is a fairly good indication that if people from the relevant  community use a word then it is OK to use. As an example, many people on the Autism spectrum use ‘I am Autistic’. However, it is also important to be aware of personal preference. Some people like one description and other prefer another. I’ll stick with the Autism example here. I am happy to be described as ‘autistic’ but others would prefer ‘person who has autism’.  If in doubt, most people probably won’t mind if you ask what their preference for a description is.

In the mental illness and disability worlds many people don;t like to be described using language that puts their health condition first or that takes away their power and agency and suggests they are some kind of victim (think ‘person who uses a wheelchair’ as opposed to ‘wheelchair bound’). In addition, some terms for mental illness conditions are misused to the irritation and detriment of people who experience the condition. Think of the term ‘psychotic.’ This is used throughout society to describe some one who is violent or evil while in fact psychosis is a set of symptoms that mean someone loses touch with reality. It has nothing to do with violence or evil and in fact, met people experiencing psychosis are terrified and far more likely to commit violence against themselves than anyone else. For people who experience psychosis – and I can say this from personal experience – this misinterpretation of the condition is very disempowering and results in me having to explain to half the world what the correct meaning of the term psychosis is.  Another misused word from the mental illness world is ‘manic’. Parents will say their children are manic, but unless the children are in an elevated state of mood, stay awake for days or weeks on end and/or have a diagnosis of bipolar disorder, it is unlikely that they are manic at all, they probably just had too much sugar.

Essentially using the accepted and respectful term for such things is not about wrecking free speech or being a PC thug (whatever that is), but rather it is about showing respect to people who may face discrimination in the world due to their membership of a particular group (or ‘club’ as I like to think of it). I often say to people that if they met an African person they portably wouldn’t use an offensive racist slur to describe them, so why is it such an issue for people from other groups. It really doesn’t take long to ask how someone likes to be referred to or learn about different communities.

The funny thing about certain people’s reaction to my concern with respectful language is that I’m sure they don’t think  that they are being disrespectful. One person who I won’t name insists on using the ‘R’ word as a description for people with intellectual disability. When I take this person to task they fail to see the issue. For me, using respectful language is an important part of communicating well with people from different backgrounds and communities. Although I sometimes feel like I am fighting an uphill battle, I will continue to do my best to fly the flag for respectful language.

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My cat, Mfr Ronnie always uses respectful language – ‘purr’ is welcomed by almost everyone

Why I stopped agonising over whether I am a ‘proper’ Autie?

As a person with Autism I often encounter ignorance and profoundly unhelpful attitudes from others about my Autism. Comments like ‘oh, but you don’t look Autistic’, ‘You could pass for normal you know. You don’t really need to say you have Aspergers’ or ‘Your autism can’t be very serious if you can speak. I mean you’ve got a job. Are you sure you’ve got Asperger’s?” These kinds of things certainly serve to annoy me and guarantee that the person saying them is off the Christmas list (or my Facebook). However, in the past, these sorts of thoughts and attitudes made me challenge and question my diagnosis and whether or not I was a ‘proper’ Autie. They eld to confusion and self-doubt. This post is all about myself and my fellow Autistic people being proud of who we are and debunking the concept that there is any such thing as a ‘proper’ Autistic person.

I received my Asperger’s diagnosis when I was twenty by the amazing psychologist Vikki Bitsika who nows heads up the Autism unit at a major Australian university. For various reasons I denied or questioned its validity. A few years after my diagnosis I found myself in a psychiatric hospital which was ruled by an arrogant and unpleasant chief psychiatrist in much the same way as Mordor is ruled by the Dark Lord Sauron (in Lord of the Rings). This chief psychiatrist told me and my parents that I did not have Asperger’s as I was diagnosed by a clinical psychologist and apparently only psychiatrists are capable of giving diagnoses (which I later learned was utter crap, incidentally). So once more I was questioning my Autism diagnosis.

As I moved through life, I met lots of people who all seemed to have an opinion on my Autism. Here’s a list of unhelpful things they said which led me to question whether or not I was a ‘proper’ Autie:

  • You have empathy. Autistic people don’t care about others
  • You have a sense of style. Autistic people don’t care what they wear
  • You don’t have any savant skills do you?
  • You don’t like maths, computers, trains, engineering, space, etc etc
  • Hardly any women have Asperger’s. You’ve probably got borderline personality disorder
  • You’re too cool to have Autism
  •  But you have a sense of humour
  • You don’t look Autistic
  • Oh, that would just be your mental illness.
  • Everyone’s on the spectrum somewhere, You’re not special
  • You’re such a good friend, Autistic people are terrible friends
  • I saw that TED talk Temple Grandin did. You’re nothing like her. Do you like cows?

All of these statements are somewhat unhelpful to say the least. I can attest that I am a good friend, empathetic, have a sense of humour, am extremely ‘cool’ an am rather different from Dr Temple Grandin. However, I am still Autistic. These sorts of statements come from a place of ignorance. It took me years to work out that I really was on the Autism spectrum and not to be fazed by these sorts of comments.

One thing I learned over the years is that there is no such thing as a ‘proper’ Autie. We are all ‘proper’ but also different. In fact Autism is a condition which does not determine or affect every element of a person’s life. There is a saying that ‘If you have met one Autistic person you have met one Autistic person’. We are all individuals and all distinctly, beautifully, amazingly different. No person – Autistic or non-Autsitic – has the right to deny someone on the spectrum their Autistic identity. The only person who can say whether or not a person is on the spectrum (other that the Autie themselves of course) is the clinician who diagnosed them. People saying that we are ‘not Autistic enough’ (or whatever) are being ignorant and insulting. Given that many of us put on our ‘game face’ to the world, people other than our immediate families of partner may not see the impact of Autism on our lives, so to claim that someone is ‘not Autistic enough’ is inappropriate and invalidating to ay the least! I feel that the solution is building acceptance and understanding around Autism and for those of us on the spectrum to promote inclusion an challenge such ignorance.

For me, I have no doubt that I am on the spectrum now. Most people in the Autism world who have met me say that I am quite an ‘obvious’ Aspie. This makes me happy. when others make ignorant statements like the the ones listed above, I try to gently explain how what they say is not furthering any positive agendas and should be challenged. I value my own Autistic identity and try to share my experience with the world to hopefully make a little difference where I can.

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Me inadvertently challenging some stereotypes by daring to work! 🙂

‘You’re just gong through a phase…’ The many and varied stages of an atypical life

“You;re just going through a phase.’ I’m sure every teenager has heard that from a parent or relative. It’s as if their experience is irrelevant or not worthy of acknowledgement. But we are all going through one phase or another during our lives. Life tends to be a series of phases. This article will look at the phases of my own life – a woman with Autism spectrum condition and atypical schizophrenia.  Hopefully others will be able to relate and draw some understanding around their own – or their children’s lives.

1-12 years – problem child and nature kid

I was born in an era with Asperger syndrome and Autism were either not known of or were misunderstood. I went to school with no assistance whatsoever. I was a ‘difficult’ child. I wouldn’t let my father come near me as an infant. I was unhappy, angry, at times violent, and unaware of the kids of relationships an friendships that other children have.  I loved nature and brought all sorts of creatures home as  potential pets (much to my mothers’ annoyance concern), including stray dogs, birds, mice my cat had attacked, lizards and on one occasion, a fat green toad. I had a fierce and unusual intellect and was told by some educational functionary that I had an IQ in the Mensa range. I read every book I could find. I loved extreme sensory experiences like looking at the sun through closed eyes and spinning in endless circles. I had a few friends.

Teen years – communist, rebel with one or two causes

My teenage self experienced bullying and victimisation, I have no self-protection skills, was an obvious outcast, but was leader of the ‘nerds’ at school, a straight A student who never studied for exams. At age 14 I left the fundamentalist church my family attended and joined the International Socialist Organisation. I had no sense of boundaries or limits, I was angry and defensive, clinically depressed (but nobody picked up on this). I fell victim to a number of sexual predators due to my naiveté and trouble saying ‘no’. I left home at 17 and joined the adult world. Somehow I was independent but that came with issues. I was not the average teenager and had wisdom beyond my years in some respects and was completely confused about other things that people took for granted. My teen years were all about discovering and asserting my identity.

20-29 – Into the void and other the other side

At the age of 20 I found myself in prison due to some idiotic acts with my older, psychopathic boyfriend. I was diagnosed with Asperger Syndrome in 1994 and schizophrenia on 1995. Needless to say I ignored bother these ‘labels’. I sent five years in Hell – drugs, crime, homelessness, mental illness. I made a dramatic change when I was 25. I decided to be ‘ordinary’ – get an education and a job. I enrolled in uni and set about making a good life for myself. I was clever, contrite and tried to learn about life as a respectable member of the community. I had no money and was unable to work. I lived in public housing and longed to escape to a more middle class world. I have issues with m relationships with family. My twenties were all about learning the limits and building life skills.

Thirties – starting to be successful

When I was 30 I wrote my autobiography. My view of myself started to change. I got my Masters degree and started work as a graduate public servant. I became middle class quite quickly – both in my bank balance and attitudes, I started my work as an Autism advocate but not many people seemed to take much notice of the girl who wrote the Autism and prison book. I had an episode of severe mental illness when I was 35-38. This gave me a lot of resilience and appreciation for how good my life was. I got Mr Kitty – my best protective factor against mental illness and a good feline friend. I gave a TEDx talk. Suddenly people were noticing me and I wasn’t sure how I felt about that. My thirties were about consolidating my character and understanding myself and my limitations.

Jeanette in her forties – the next chapter

I have been 40 for six months and so far I love it. The best thing I have learned so far is that I don’t really care what others think of me. I wish I’d known that when I was in my teens and twenties. I think 40’s is about building on everything I have learned and really getting my career – both my paid work and my advocacy – humming along nicely and building my friendships and relationships with others.

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Little me – don;t think she knew what was in store for her