Autism – not just for kids

Last Christmas I went to my parents’ lovely house in regional Victoria for the annual Purkis/Smith family celebration. Before my brother, his wife and my lovely nieces and nephew turned up, my mum gave me a little card she had made herself on the computer. My mum is the queen of thoughtful little gifts which have little monetary value but which have a high sentimental or spiritual value. This gift was no exception. The card was simply a piece of folded paper with a photo of a butterfly on it. Inside, my mum had written something wonderful: she intended to get herself assessed as to whether she was somewhere on the Autism spectrum. Delighted, I put my mum in touch with a good friend and fellow author who is a psychologist and qualified to conduct the assessment – Tania Marshall. Tania booked my mum in very quickly and before long my mum told me that she was on the Autism spectrum – although maybe a little ‘milder’ than me. My mum has since told me that she got the diagnosis for me. As I say, my mum would win the Olympic gold if there was a ‘thoughtfulness’ or ‘love for your daughter’ category.

This is not so much an article about adult diagnosis. Rather it is about dynamics between Autistic kids and Autistic parents.  For me, I have suspected for some time that some of my close family members may have Autism. My mum has always had some amazing interests – fungi, insects, orchids. In fact, my mum knows the Latin name of almost every plant she comes across. According to Professor Tony Attwood, an internist in nature is a very common Autistic trait, especially for women and girls. This was true of me when I was a kid too.

My mum’s diagnosis has made me think a lot more about what her life must have been like. For those of you who don’t know me well, I spent the first twenty five years of my life making every mistake a young woman could –  I went out with inappropriate and often dangerous partners, I got involved in crime through some of those people, I had a drug problem, I joined extremist socialist groups. Some of this was probably as a result of my Autism and some was most likely due to all the bullying and victimisation I experienced and my subsequent low self-esteem. Needless to say, my poor parents had no idea why I was doing these things or how to help me. I did not have an Asperger’s diagnosis until I was 20 and in prison, so my mum and dad saw a child who apparently had ‘everything going for me’ – intellect, talent, motivation –  but who sabotaged herself at every turn.

One thing which makes me sad even now is how other women especially treated my mum. Surely such a deficient daughter must me the result of poor parenting? I seemed to spend many years gaining extra ‘mums’ who thought I would be better off if they were my parent. In fact one obnoxious woman even said this in front of my mum.

Thankfully I am now a relatively happy and successful Jeanette. I own my Asperger’s and schizophrenia diagnoses. I even provide support to others in similar situations. I bet my mum would have enjoyed some support for all of us as a family. My mum was never a bad parent. She loves me and my brother so much it’s hard to fathom sometimes. Sadly due to general ignorance around Autism in the past and the unfortunate habit lots of people have of judging the parenting skills of others without knowing all the facts, my mum has had a bit of a rough trot.

I attended the Aspect Autism in education conference earlier this year and one of the speakers talked about a program she is running for parents who are on the spectrum in Victoria. I was fascinated by what she had to say. At the end, I made a comment about my mum being an Aspie and how she was the perfect parent for me, in part due to our shared Aspiness. Everyone  clapped and I was glad to promote the value of parents on the Autism spectrum. Here’s a few reasons that I value and respect  my mum, love having an Aspie parent and would’t have her any other way:

  • We understand each other and always have
  • My mum and I are like a little club
  • She is always honest with me
  • As a child and teen I could tell my mum anything and she would listen and understand
  • My mum never called me ‘weird’ or put me down for being different
  • My mum is like my best friend and always will be
  • We share some common interests and understanding.

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A sunflower. It’s full of life and love and beauty – like my mum

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Murder is murder

Trigger warning – content discusses murder of children

Recent tragic events in Cairns where eight innocent children were murdered by their mother (allegedly), got me to thinking about another set of cases where parents murdered or tried to murder their beautiful, innocent children. Over the past few years there have been a number of highly-publicised cases of mothers murdering their Autistic children.  Unlike the case in Cairns, when Autistic kids were tragically killed, the media and other commentators sympathised with the mother. ‘Autism is hard’, they said ‘A tragedy…’ This is not acceptable. To me, murder is murder and blaming the victim – or their Autism – is appalling.

Just imagine if a parent killed a child with severe asthma because looking after them was ‘too difficult,’ or a child with type 1 diabetes. There would be an outcry. So why do we as Autistic people rate as less than human? Why is killing one of us apparently an understandable – if tragic – response from a parent? I suspect that there are a good number of reasons for this. Obviously, as with any crime there is an element of the personal responsibility or agency of the perpetrator. It is a very small percentage of Autism parents who murder their children. There is also a significant influence from social attitudes around disability and Autism more specfically. Apparently Autism is ‘a tragedy’. Anti-vax types who believe (erroneously) that vaccines cause Autism would prefer to risk a dead child than an Autistic one. When I tell people I have Autism they often look at me sadly and often ask me unhelpful things like ‘do you live at home with your parents?’ There is a general lack of respect for the positives that Autism brings. We – and especially when we are children – are seen as some kind of alien, an ‘idiot savant’ perhaps, not quite human. All of these things combine to make us an easier target for violence.

There is also often a lack of support and other services for Autistic people and their families. I’m obviously not saying that a lack of services justifies murder – or course it doesn’t – but it may exacerbate other issues around lack of value and personhood for Autistic children.

The saddest thing to me in all of this – other than the absolute tragedy of young people full of potential and worth being murdered by the one person who they should have been able to trust – their mother – is the reaction from many media outlets. Respected media commentators sympathise with the murderer – they seem to see Autism is a mitigating factor for guilt. This is appalling. Murder – and murder of a child especially – should be met with the full force of the law. Media outlets should not blame the victims and tacitly excuse the gravest of crimes.

Obviously this is a very fraught issue and parents who commit these evil acts are not in a good place but a few things should happen to help address this situation:

  • Autistic life should be valued to the same extent that other human life is valued
  • Media outlets who have issues around victim-blaming should change their attitudes and gain some experience of the value that Autistic people bring to life
  • Societal attitudes around Autism need to shift from the negative to the positive. Autism is not ‘a tragedy’.
  • Parents should be supported to love, care for and value their children and supports provided if they are experiencing difficulty.

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Stop the victim-blaming. They are innocent beautiful children who deserve a future.

A very merry Jeanettey Autie Christmas

I spent the first eleven years of my life in England. For anyone who hasn’t been to England in wintertime, it is cold. Snow, ice, frost, low dark skies. It all lends itself wonderfully to Christmas (for some reason, because I would imagine that Jesus was born somewhere warm). Christmas was a magical thing for me as a child, mostly because there were lots of sparkly, shiny things, we got presents and ate magically festive food. It was also a time when my parents – who were usually quite frugal given the tough economic times – would buy my brother and I gifts. These would mostly be placed in a stocking – not one of those red and green Santa Claus ones you get now, but one half of one of my mum’s pantyhose. I’m still not sure why but every year there would be a satsuma (or mandarin for my Australian readers) right at the end of he stocking. Some years we would visit cousins and aunts and uncles, which was always chaotic and fun. I was the youngest in the family so the collected aunts, grandparents and older cousins all doted on me. There was also something to do with Christianity which mostly involved kisses from older members of our Christadelphian church and of course the Christmas story, For an Autie, having the same carols, nativity story, food and the obligatory school play was very comforting. Little girl me thought that Christmas was a pretty good thing.

My parents – especially my mum – were far more focussed on the religious aspect of Christmas than the food, gifts and sparkly things. My brother and I were told from as long ago as I remember that when we turned 16, there would be no more Christmas gifts. And my parents kept to their word as far as I recall.

As I grew older I liked Christmas less and less. In fact I spent Christmas in1994, 1996, 1997, 1998 and 1999 in prison, which was pretty awful (although far worse for fellow inmates who had kids waiting for them on the outside). By the time I started to change my life for the better, I had very little affection or warmth towards that particular day on 25 December. I thought the traditions were pointless, the decorations tacky and you really wouldn’t have wanted to get me started on Carols by Candlelight! (‘has been non-celebrities, awful singing etc).  I didn’t feel desperately close to my family and Christmas seemed to make me extra sensitive to their perceived put-downs and rudeness.

A few years on, we had a new addition to the family – a wife to my brother, my sister-in-law. This diminutive but forthright addition to our little clan loved Christmas. I distinctly remember thinking ‘oh crap! I’m going to upset her by being a combination of Ebenezer Scrooge and the Grinch who stole Christmas.’ I suspect I wasn’t the only one. My mum is a complete aescetic in a lot of ways. Material goods have very little impact on her happiness. For years our only Christmas presents to one another had been charity gifts (you know the sort of things – goats for people in developing countries and so forth). With the arrival of my sister in law and her family into our lives, and quite soon afterwards three small Purkises, our Christmas culture had changed. Oh how this Autie hates change!

However, this Autie, as well as hating change, is thoughtful and considerate – or at least tries to be. I didn’t want to be the person who was miserable at Christmas, who ‘accidentally’ told her nieces and nephews that Santa Claus was fictitious (and inspired by Coca Cola advertisers apparently). Change – while unpleasant and challenging – is also a part of life and I was very happy about the inclusion of the new members of my family. I realised that I had to turn my ‘bah humbug!’ into a ‘goodwill to all!’. This necessitated a change to who I was and how I thought. That sounds a bit tricky, but some years previously I had gone from begin a criminal, homeless, negative, druggie person to a university student then author and then public servant. So surely changing how I felt about Christmas should be easy. And actually, it was. Last year I decided that I would not entertain negative and paranoid thoughts about family members. If in doubt, I could talk to my nieces and nephew who love their Aunty. I would keep in mind all the positive aspects of Christmas. I never quite managed to watch carols by candlelight, but when strangers wished me ‘Merry Christmas’ in shops, I would smile and reciprocate the greeting. And in fact, I discovered many positives: sparkly things, tinsel and baubles are awesome, seeing kids’ opening their gifts and being amazed and excited is awesome, family are great. Just think of how difficult Christmas must be for people who don’t have a family or a relationship with family members. And I really love carols and the Christmas story.

Yep. There will be no more bah humbug from me, but a very merry Autie Christmas to all who celebrate it, happy Festivus to those who don’t and all the best for the new year for al the good people of the world. Thanks for reading, sharing, commenting and liking my blog these last few months. I look forward to hearing from you in the new year. :IMG_0593)

Ok, so not Santa Claus but happy author pic, just cause, well, it’s my blog and I think that scarf is pretty festive 🙂

A weighty issue – self-image, mental illness and body weight

Those of you who know me or have seen photos of me will know that I am somewhat heavier than medicine recommends. When I was in my teens and early adulthood, I could eat anything I chose and stayed at an (Australian) size ten or twelve. I never worried about ‘watching my weight’. If I wanted chocolate I ate it. I have a fast metabolism and a lot of anxiety and I suspect that the combination of those resulted in my apparently enviable body mass index.

When I was 21 I was diagnosed with schizophrenia and told I would need to take anti-psychotic medication for the rest of my life. So far this predication has been correct. I still take a relatively high dose of a couple of anti-psychotic medications.  For those of you who haven’t come across such things, a side effect or pretty much all of these drugs is that they cause you to gain – and retain – body weight. When I was 22 I wore a size 10, at 24 a size 16 and now, at age 40 I wear a size 20. For many people, this additional weight might result in self hatred or misery. For me it doesn’t. I have never judged myself based on my looks. If I am happy with what is in my heart then I am happy with what I look like too. I don’t think larger people are lazy or undisciplined or ugly. Your body is merely a receptacle for your soul and if your soul is beautiful. As far as I’m concerned, it hardly matters what the body it reside in looks like.

Sadly, I suspect I may be in a very small ‘club’ in relation to these views. Most people seem to judge others based on how they look. People insult and judge bigger people. They think carrying extra weight is an indication of greed, laziness, a lack of pride in oneself and so forth. These kinds of attitudes can be torture for those of use who are a bigger size. For me, I don’t particularly care. As I stated before, I value myself for what’s in my soul, not what’s in my jeans. However, for other people, these kinds of judgements can be a torment and a curse. They can make people feel guilty, worthless, ugly and depressed.

Our society places so much value in what we look like. And not just around weight but also age, skin colour, facial features or physical disabilities. This is one part of our world which I find it difficult to fathom. But all these ‘norms’ of appearance results in a multibillion dollar industries around making apparently ‘aberrant’ people look ‘good.’ People feel they have to conform to norms of behaviour around things like eating. Woe betide the person – and particularly big people – who have an extra slice of cake at a work afternoon tea. If one is big, there is an intrinsic expectation – often unspoken – that you should be watching your weight and going to the gym. We are supposed to feel guilty and want more than anything to lose weight.

Personally, I am sick of all this crap. And remember that I am writing this from the perspective of someone who doesn’t judge myself based on these criteria. Imagine how people who are influenced by these expectations and genuinely judge themselves negatively because of their weight.

Yes, there is a weight range in which one is more likely to experience health issues like diabetes and high blood pressure. This is a Health Issue, not a character or personality one. I will continue to love and value myself. And as I said on Facebook recently, if my worst characteristic is that I am fat, then I must be the most awesome person in the world! Love yourself, value what’s inside and yes, lose weight for health reasons or because you want to but not just because the world dictates that people must look a certain way. You are all so amazingly beautiful, wonderful humans. I know this without needing to look at your body or your face. What’s in your soul, your heart, your being is ultimately what matters.

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Me being big, beautiful and awesome – launching a book in 2014

“Physician, heal thyself!’ – why I don’t want to be ‘cured’

I attended a conference on Wednesday of the week just gone. The organisation which hosted it was a research body funded by he Australian Government. They are great people and have a strong focus on inclusion and making use of the wisdom of people on the spectrum to inform the design of their research. They have staff members who are postdoctoral students who are on the Autism spectrum. Put simply, this organisation ticks all the boxes in terms of my involvement. My presentation was very well-recevied and the managers and the CEO enthusiastically posed for photos with me afterwards. Presumably the pictures will be featured somewhere in their newsletter or website.

After the ‘nice’ conference, there was another event at the same venue. This event included a speaker from Autism Speaks and an academic who receives funding from said organisation. If you are fortunate enough to have not encountered Autism Speaks (or Autism $peaks as some people write it), they are an organisation which does not seem to value the perspectives of Autistic people. There are no Auties on their Board and a lot of their literature focuses on the ‘need ‘ for a cure for Autism. Apparently, someone typed the search criteria ‘what do Autistic people hate?’ into Google and Autism Speaks was one of the top hits!  I don’t want to get into a debate about individual organisations, however. What I’d like to look at is the concept of a ‘cure” and why Autism advocates like myself find it somewhat problematic.

So, what is Autism? Is is a disease? A mental illness? Is it all negative? Are there any ‘good’ attributes around Autism? Do Autistic people identify with Autism as being part of our character? The answers to these questions often vary depending on who is being asked them. For me, Autism is an integral part of who I am. Many other Autistic people feel this way too. If you removed my Autism, I would cease to be Jeanette. I like being Jeanette – she’s awesome and writes books! So if somebody said to me ‘here’s a cure for your Autism. It only costs a dollar’, I would decline politely. However, where these things can get tricky is that some parents of kids on the Autism spectrum only see the negative attributes or they see the way the world reacts badly to their child and victimises or discriminates against them. Many of these parents would be delighted if they could ‘cure’ the Autism issue. I understand their perspective, even if I don’t agree with it.

Here is a summary my thoughts around ‘cures’ (keeping in mind that there are lots of interests and opinions about these things in the world and many will disagree with what I say):

  • I am a successful, strong, wise, positive person with Autism. I am proof that Autistic people can overcome difficulties to achieve great things.
  • Diversity is great. ‘Curing’ Autism and other conditions, illnesses etc would water down diversity and create a homogenous human race. I couldn’t think of anything worse. Diversity teaches people about others’ perspectives.
  • If somebody ‘cured’ my Autism, I would lose a whole bunch of amazing attributes. I would miss them.
  • Often the bad experiences that Autistic children and adults experience are more around the world not being Autism aware than any actually issue caused by Autism.
  • Autistic people form a culture. This may be a little controversial, but a ‘cure’ could be tantamount genocide, particularly if Autism could be detected before birth and parents-to-be decided to terminate Autie babies.
  • It would seem that many influential thinkers, writers, scientists etc in history may have had Autism spectrum conditions (Einstein, Newton, Mozart etc). Dr Temple Grandin once said that if there were no Auties, all the non-Autistci people would be still sitting in a cave, socialising! We need Autistic people and divergent thinkers to solve problems in all areas of life. Rather than begin a drain on the community, Autistic people often make amazing contributions.
  • If we spent all the money and effort that is being spent trying to ‘fix’ Autistic people and make us neurotypical on trying to value and include people on the spectrum instead, that would be a much better allocation of resources,

Just some considerations for you to consider…

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One of my Asper-powers is writing…here’s a little bit of proof 🙂