We had a new Branch Manager start at my workplace yesterday. Being an outgoing Jeanette I mentioned to her executive assistant that I would like to meet her if she had a moment. I introduced myself and told her a bit about what I do in my job and outside of work as an Autism self-advocate. Even though our meeting was very positive and pleasant, I left filled with anxiety. I was not anxious about having a new manager or about how things might change or even that she might not like me. My anxiety was much more practical and conventional: I was worried that the next time I saw my new manager I would have no idea who she was.

I have a condition called prosopagnosia, also known as face blindness. It is more common among Autistic people than others and it can be very difficult. When I was a toddler my mum, my brother and I travelled overseas and my dad stayed behind. Apparently when we were greeted by my dad I had absolutely no idea who he was and was afraid of the man with the beard and didn’t want him to go near me.

Prosopagnosia  can vary in how it impacts a person. I have a relative who can recognise people in the real world but gets endlessly frustrated while watching movies as he can’t pick which character is what.

I used to be incredibly anxious about being seen to be ‘weird’ in regard to my lack of the ability to tell one human face from another. I didn’t realise that other people experienced similar difficulties and thought everyone would be rude and judgemental if I explained to them that I hadn’t known who they were. This was tied up with my lack of self respect and my having no positive Autistic identity. At that time I thought my Autism was almost something to keep as a secret and anything I viewed as being related to it – like my face blindness – probably needed to be kept to myself as well.

In 2006 I was exhibiting as part of artist collaborative group called Space Pork Adventures at the Australian Centre for Contemporary Art (or ACCA to its friends). Any artists among you will know that was a pretty big deal. ACCA is a public gallery which holds shows of internationally renowned artists. It was certainly a new world for me – at the time a public housing tenant, social chameleon and long-term unemployed person who felt intimidated by anyone with a job. One of the curators from ACCA was working with our artist group. She was a twenty-something woman who wore trendy clothes and rode a pushbike. At the same time I had another prestigious thing going on. My first book, an autobiography called Finding  Different Kind of Normal, had just been released. As a result of this I was also in the middle of being one of four Autistic adults filmed in an independent documentary which ended up being screened nationally  on ABC TV. [The film is called Alone in a  Crowded Room and it features Dr Wenn B Lawson, Akash Temple and James Treffry – and me – and is wonderful. It is available as a DVD on the Sensible Films website…. and I’ll stop plugging things now!] The filmmaker was a young woman who looked remarkably similar to the young curator at ACCA. I was definitely in aspirational territory and wanted to make a good impression with all these employed artist type people and was scared I might get one mixed up with he other. I attended the opening of the exhibition at ACCA and spent about twenty minutes talking to a young woman. I knew it was either the filmmaker or the curator but had no idea which one! I had this conversation with no idea of which person I was speaking to. I kept looking for cues to indicate whether it was my curator colleague or my filmmaker friend. I never worked it out but the next time I spoke with the filmmaker she said it was her that I spoke with and she had wondered if I had difficulty recognising her after we parted.

After years of trying to figure out who people were, I realised relatively recently that it is actually OK to tell people you have an issue with facial recognition. I  think it is probably better to tell people as they understand. People do seem to have a habit of making assumptions about others’ perceived ‘oddness’ and often what they fill the gaps in their knowledge wth is less pleasant than if you explain the real reason to them.

This is my usual response when I don’t know who someone is and I am aware I probably should:

“I am very sorry. I am not being deliberately rude, I have face blindness. I’m not sure who you are. It is because the part of my brain which processes inanimate objects is what I use to process faces. It is quite common, especially among Autistic people like me. If you tell me who you are and where I know you from I will remember you. Thank you.”

I would not have been able to say that to anybody when I was younger and didn’t own my Autistic identity and I wasn’t connected with the Autism community.

When I was embarrassed about my differences I was unable to explain to people something which made me look more ‘different’  – it formed a sort of a catch 22 situation  of not recognising people. I am much happier to be able to explain and usually people are fine. And for those that aren’t fine? Then I suppose it lets me know that I need to focus attention on representing for all things Autistic and educating them.

So if you see me at an event and I don’t know who you are, I do apologise. It’s just how my quirky little Jeanette brain works. And it is perfectly OK and not something to be ashamed of. And if you have face blindness too? Well I hope you found this blog post helpful. And you are most definitely not alone.

Today I was in my parents’ home in Beechworth. I had travelled here to spend today with my dad as, after 31 years in Australia he was going to get his Australian citizenship. This might seem like a neat little thing – adult child goes home to celebrate citizenship ceremony with lovely Dad. In fact it was a difficult but beautiful time and it got me thinking around identity in all its forms.

Australian identity

I was registered as an Australian citizen by my mum – herself an Australian living in England at the time shortly after I was born. I still have UK and Australian dual citizen. When I moved to Australia as an 11 yer old, I felt more at home here. We moved to a country area and I lived on a dirt road with country people. School was hard. Everybody seemed to hate me – I had a silly accent, I dressed ‘wrong’ apparently an I had an imperceptible air of weirdness which all the kids picked up on and that I could not rid myself of no matter how hard I tried. While I loved Australia, I hated the isolation of living in the country where I could only escape if a parent drove me somewhere.

At age fifteen, for a variety of reasons I became a teenage socialist, reading Karl Marx on the school bus. I joined the International Socialist Organisation. They told me that everything I had learned about Australia was wrong. Mateship was apparently a toxic myth, we were all part of a racist ‘colonial settler state’ and even our Labor government at the time was complicit in exploitation and victimisation of vulnerable people. School history lessons certainly became interesting!

As a socialist, I hated Australia Day, bush music, the flag and related things. When my parents asked me to buy some Australiana-themed gifts for my English relatives I flatly refused! As years went by I stopped being a socialist and in getting older I have become much less hard-line about things. I will speak out about prejudice and discrimination where I see it, but I don’t blame country people and their doings with all the evils of oppression.

Today is Australia Day – quite a fraught date in our nation. For those outside of Australia, Australia Day marks the European settlement of Australia commencing form 26 January 1788. For a lot of Aboriginal and Torres Strait Islander people this date marks a day of sorrow and anger at the loss – sadly often quite intentional – of their cultures and lands to the settlers. We do have a shameful past – and sadly sometimes a shameful present – in relation to the First Peoples of our nation. I am acutely aware of this.

Today was an event I would never have thought I would enjoy, least of all feel emotional about. There was a ceremony for new citizens – including my Dad. There were speeches by the Mayor and a wonderful Australia Day Ambassador who had migrated here form Malaysia many years ago. He had an even more impressive CV than me!

We sat near the front. There were some entertainers – a lovely young woman singing, a intense-looking folk musician who came by himself and sang beautiful, sad songs and an outgoing fellow singing bush ballads and getting the kids singing and dancing. In the past I would have sat in the audience biting my tongue to keep from complaining about all the nationalists and things and feeling very out of place! Today I participated in the singing – even doing the dance moves for ‘Give me a Home Among the GumTrees.’ I sat between my parents. If you don’t know much about me, my parents were the two people the stood by me through every awful experience and poor choice I committed in my twenties. Their love for me is tangible. While we singing and clapping i was trying hard not to cry from all the things competing for my emotional attention – my dad becoming Australian like my mum, my brother and me, all the people from their town that I know and who were there for my Dad, even coming to terms with my own personal history. For the first time since I became a socialist in 1989 I actually felt Australian. I have never had much of a sense of national identity as English or Australian but today I did. Not the kind of identity that excuses errors by one’s country and its people, but one which enables me to love where I live and hopefully hold it to account if it does something unhelpful – sort of like a friend.

Autistic identity 

I had another experience of identity today and that was my Autistic identity. I have been quite confident in my own Autistic identity for many years but today got me thinking about Autistic identity as it applies to me and others.

I had morning tea with three women – all mums of Autistic kids here in Beechworth. Two of them came to a presentation I gave in 2015 and the other I hadn’t met before. We got take away coffees and sat in the same park where my Dad became a citizen this evening. One of the women had contacted me and asked to catch up. She asked if we could talk for ten minutes but I thought coffee would be a better idea.The four of us sat on a park bench and talked for two hours. I don’t think I talked as much as I usually do. Like parents everywhere, sharing stories and concerns about their kids is a very  important thing, particularly if their kids – and they – might be having a hard time.

We had a great conversation. The woman I sat next to hadn’t come across much that I had done. I often have the extrovert’s folly in these situations and introduce myself loudly and list a bunch of my accomplishments but I’m getting better practiced with my communication with groups so refrained from doing this.The woman asked to see the copy of my mental health book and spent a long time looking – not flicking through it but reading the foreword by Wenn Lawson. I noticed her doing this but didn’t say anything. The she said ‘Wenn says Autism Spectrum Condition. I like that. I’m never keen on disorder. It’s not that. it’s a difference’. We discussed that and she bought the book.

My own identity certainly focusses on my strengths not deficits. I don’t use the term ‘Autism Spectrum Disorder’. I don’t feel all that ‘disordered’ – more misunderstood in my difference. I call myself Autistic. I introduce myself to almost everyone as ‘I am Jeanette. I am an Autistic self-advocate….’ It works for me.

Today got me thinking about identity though. Twenty years ago, my identity did not include ‘Autistic’ or ‘Australian’. Today it does. But nobody else can or could bestow upon me an identity. An identity is what we choose for ourself. It is us coming to terms with being who we are. I know some people will correct those who say ‘I am a person with Autism’ – but it is not wrong – it’s how they identify. If it works for them and is how they understand themselves, it is not mine or anyone else’s business. I never told my dad he should become an Australian citizen. His identity as English was presumably that is how he viewed himself. Then he decided to become Australian. Him being English or Australian – like me seeing myself as Autistic – represents our own sense of identity. Unless someone identifies in a way which is damaging to their sense of self or is hurting others, it is their ‘them’.

I am a happy Autistic, Australian, Asexual, author, public speaker, public servant and advocate who has atypical schizophrenia and is human mum to Mr Kitty.

Beechworth’s new citizens – plus a politician or two

 

Today a friend and advocate colleague asked me for a quote on how Autism – and attitudes surrounding it – contributed to me being involved in criminal acts when I was younger. This is what I gave her:

“As a young woman I was very naive. I didn’t yet have my Asperger’s diagnosis and was desperate to be accepted. I was targeted by a criminal ‘boyfriend and committed crimes to gain his approval. I went to prison I became a social chameleon in order to survive. I was such a convincing social ‘actor’ that I identified with being a criminal so spent the next few years in and out of prisons. More understanding about Autism – and a timely diagnosis – may have kept me out of prison and spared me and the victims of my crimes from a lot of misery. I m doing well in life now but five years of my life were lost.”

These days I might be the least criminal person in the country. I pride myself on my ethics and community involvement, in my volunteer work and my will to make the world a kinder and more inclusive place. I have not committed a crime since 1999. But between 1994 and 1999 I committed plenty of them. I don’t often talk about this. I find it shameful and I hate to be defined by it but being asked for my thoughts on the topic made me realise other people are currently in the same sort of situation I was and their parents, kids and others who love them are most likely going through the kind of misery and anguish my parents did.

I will preface this piece by saying I do not condone crime or acts of violence. I do not make excuses for my own behaviour. While there were extenuating factors, I also had a choice. The notion of personal responsibility applied to me and other Autistic people as it does to others. However there are elements of Autistic experience which can push people in the direction of criminal acts and these people – like twenty-something me – do need assistance, love and support like any other people.

1994 I am  a twenty year old socialist. I have been living independently for three years. I experienced bullying as a child and teen, as well as sexual and other violence on many occasions. I had very few friends and was desperate to be loved and appreciated. I met a man  through the socialists who was really nice to me and we became very close. I thought he was ‘naughty’ as I saw him spraying graffiti and doing things like that. He was confident and interesting and said things I thought validated me. He told me about some other things he wanted to do – more serious crimes. At that point I know it was wrong and I didn’t want to do it. But I also knew that if I did it I would gain the man’s approval and the way he talked about crime, nobody would be scared or in danger. He made it sound like going to work. I was conflicted. He started talking about very scary things. I wanted to leave him but I knew all his plans. I really believed if I don’t go along with him I would be killed.

1994. My mum is driving home from work and hears a news item about a criminal man and his partner, a Jeanette Purkis of Richmond in Melbourne having been arrested for a robbery. This was in the days before the world wide web and mobile phones so it was hard for my parents to work out what was going on. They drove to Melbourne and stayed with my mum’s relatives. My mum’s step-grandma  – a wealthy lady who lived in a ‘nice’, leafy suburb, said to my mum ‘If it was my daughter I would move to Peru!’ My mum now says she thinks the relative was serious.

My parents suddenly got thrown into the world of crime and prison. My parents are kind of Aspie themselves – my mum now diagnosed as being on the spectrum and my dad sitting somewhere in hid own  ‘quirky’ space. They didn’t know where to turn to for assistance or support and spent much of the time I was involved in crime feeling left out from Autism parent groups etc. If you meet a parent of someone who is in jail, remember that the people who love the offender didn’t commit a crime themselves and may be really struggling.

1995 I was released from prison but I was so damaged by the experience that I self-medicated with drugs. Getting and using drugs was my passion in the same way that Autism advocacy is my passion now. This was Not Good.  My lovely parents had funded sessions with a psychologist specialising in women and girls on the Autism spectrum but  was oppositional about the diagnosis and high most of the time so I stopped going. My next meeting with psychology and psychiatry was was an impatient in psychiatric ward where I was diagnosed with schizophrenia. I do not know how much my anxiety and drug use contributed to me becoming unwell but I do know that Autistic people can be more susceptible to drug related issues. I have now been taking anti-psychotic medication for 22 years. It seems I will need to for the rest of my life and I definitely have a mental illness in need of treatment.

Autistic people can be more impacted by various substances including alcohol and prescription drugs as well as illicit drugs. I’m not sure what the solution/s is to this but I do know that drug and alcohol dependence are not something someone wakes up and decides to do. Addictions seem to happen where there is trauma or something important missing for a person. So that would suggest the solution starts before the ‘don’t do drugs. m’kay!’ talk at school but actually goes to supporting children and young people to live a life whey they are supported and kept away form trauma and invalidation. (OK, I know that’s really hard in this world of ours but a good goal to work towards).

1999 I have been in prison on and off for years, I have nothing – my possessions are letters an cards from family and some not very good drawings I’ve done. I am incredibly unwell with my mental illness and have been given huge doses of an older anti-psychotic drug called Largactyl. I have been self harming in some pretty severe ways for years. I should have died many, many times. To say that I didn’t like myself is an understatement. I asked one of the nurses in the prison if they still did lobotomies as I thought that would be better than inhaling the hell that was my minds the life I had somehow made for myself. I had lost my identity – social chameleon and acting is good for an Autistic’s survival in prison but because it is so necessary and urgent to be convincing it can come at the cost of  person’s identity – it did for me.

However a few months after that I was a free woman, exiting the prison gates for the last time in February 2000. Six weeks before I was supposed to be released, I was planning to continue my recidivist existence as, while I hated it, it was what I knew. Then I had an argument with the scariest person in prison. I was already in what was known as the ‘management unit’ due to my acting out and aggression so there was nowhere else for me to go. In the name of my safety the officers left me in my cell which – had around the same surface area as my bathroom in Whimsy Manor – for 23 1/2 hours a day. I got to walk around the yard by myself for half an hour a day. The only contact I had with people was the nurses dispensing my medication which took less than a minute. I think I had a visit or two but that was it. Anyone who knows me well knows I am extroverted and love talking and sharing ideas with people. This awful solitude for six weeks got me thinking. I thought if I committed another crime then I would be by myself for as long as my sentence. It could be for six months! My life as an institutionalised recidivist was not something I wanted any more. I was propelled from my negative world by a negation. Of course I did a lot of work to became the me I am now than just not wanting to be in prison, but it does illustrate that some Autistic people are very practical and logical – as am I. So while there was an ethical imperative to not commit crimes and victimise people, that was not the first point on my journey to being as free as I am now.

I’m not sure if this is helpful to you but it is quite a cathartic thing to wrote. I have better go and cuddle Mr Kitty and reflect on how my life is amazing.

 

 

This isn’t entirely an Autism or mental illness blog. It is more a being human one. I write this as the world seems to be falling into a shadow of hatred. Everywhere there is ableism, xenophobia, bigotry, blame and judgement.  In the USA there is a lot of bigotry and hatred fuelled by a number of things but possibly most significantly by the recent election campaign. The fact that the Ku Klux Klan are active for the first time in two generations demonstrates what this means.

But the USA at this moment in time is a very long way from having a monopoly on hatred. I remember when I was at university in the mid-2000s there was – for the first time in my knowledge – debate on whether or not the use of torture was OK in interrogations of terror suspects. More horrifying than the fact that this discussion was even being had was that I was one of a few people in my circle of friends to express concern about this fairly fundamental shift in the dialogue around the treatment of prisoners. You have to have lost the perspective of a persona s being human to a great extent to be thinking physical torture is OK. This was a response to a series of acts of aggression and hate by Al Qaeda – another group which had lost sight of other humans as being human.

So where does this sort of thing come from? I think it is the result of having a central, social concept of ‘self’ and than a deviation from that self to an outsider, an ’other’. The ‘other’ includes everyone who  s eccentric (Literally outside the circle). It might be one of a vast number of groups, from Autistic people to Black people, those who identify as Queer – basically any group which does not fit within that social centre. These groups get ascribed negative qualities that members of the group are supposed to have which are then used to victimise them. I saw a documentary on the artist Christian Boltanski who found out at a young age that his father was Jewish. The young Boltanski was apparently horrified and said to whoever delivered this piece of information ‘but he can’t be. Jews have big hands for collecting all the money.’ That a young boy had come across such a horrific racial and cultural slur was appalling but these sorts of stereotypes exist for almost every ‘Othered’ group. They help perpetuate the stigma.  When somebody is ‘Other’ they can cease to be seen as an individual. The other is ‘not like us’. This tends to result in a number of responses, from victimisation to paternalism.

This sort of thing has been going on for a very long time. It is the flip side of identity and it is terrifying to watch. Othering can be aided and abetted by media commentators and public figures.

It sounds pretty horrible and hopeless but there are some actions and attitudes which can help.

• One thing I try to live by is that when and where I see hatred or othering in place – be it against me or anyone else – I try to not stand by and say nothing. One of the ways othering and hatred work is by making everyone feel like to stand up against it is to go against what everyone else is doing. Some people may be victimised themselves for supporting the basic rights of others. The more people that stand up to hatred and bigotry the better.
• Another strategy is to live by example. Be out loud and proud as an ally. Secrecy and fear breed secrecy and fear. But if someone states amongst their friendship group that they support whatever ‘othered’ group, it is very hard for others to attack them without seeming foolish or nasty. Also, some people may be keeping their positive and supportive views secret for fear of being discriminated against themselves. You bearing witness to kindness and inclusion could make these people feel less alone.
• My final strategy – and I am aware there are several more but these are the ones I tend to use myself – my final strategy is standing  together. I really struggle when I see someone form one ‘othered’ group being prejudiced against members of another. For example, an Autistic person expressing racist sentiments. We need to stand up together with others who are Othered. I live my life this way. I would never intentionally discriminate against any other person due to their membership of another ‘Othered’ group. As Terry Gilliam said in the dark but wonderful 1980’s film Brazil ‘We’re all in it together’. Terry Gilliam was being ironic. I am not. I suspect when standing together ‘minorities’ might not be a minority any more but if we are all attacking each other it just fuels the fires of hatred and is counterproductive for members of all othered groups.

I will finish with a statement which I sort of pledged myself to late last year due to some world events. It is “I will not stand idly by and watch the world go to darkness and see my friends and peers  vilified and abused.” I really hope it doesn’t come to that but that if it does I hope to live up to my aim.

 

You will know if I think a lot of you because when I sign off an email or message I will include the line ‘And purrs from Mr Kitty’ before I sign. My Kitty is my black cat, I have shared my lovely home Whimsy Manor with him since January 2013. Like many Autistic people I have an incredibly strong bond with animals, In my case that has always been cats although I have autistic friends who love horses dogs, lizards, snakes and probably most famously cattle (After doing some work with her online, I sent Professor Temple Grandin a photo of a pottery cow with a floral design that I have. I reckon Temple gets even more bovine things than I get black cats from friends and supporters!) .

I don’t know how much research there is on this but Autistic people often have a bond wth their animals that non-autistic folks simply can’t fathom. If any non-autistic folks are reading this, here is my attempt to explain what a cat does for me. I’ll use narrative because I like narrative and I usually do it well.

Between 2010 and 2013 I spent many months in psychiatric wards being treated for a pretty unpleasant psychotic episode. (I have a  mental health diagnosis in addition to my Autism.) My life was a constant struggle: A struggle to keep my job and home; a struggle to keep my self-respect and dignity; and sadly on many occasions a struggle to exist at all. My apartment – at that point unnamed – was lonely and scary. A lot of my illness was focused on the house. I believed all the appliances were dangerous so showered in a  bucket and hand-washed all my clothes in the middle of a Canberra winter. I went to work as often as I could and secretary longed to be able to live in the office – sleep under my desk and not have to return to my scary home.

I have always been close with cats and many friends told me ‘you will be happy if you get a cat.’ I dismissed this. I couldn’t even look after myself. How was I supposed to care for a living creature? On day early in 2013 I was home from work. Again. I felt miserable. I went to put the garbage out and there was a little tabby cat on the wall. I gave this cat a cuddle and he loved it. There was lots of purring and smooching. When I went back inside I realised while I was petting the cat my misery had retreated. Not only did I not feel miserable when I was with the cat, I actually felt good. I decided to adopt a cat at that very moment of realisation.

A close friend at the time was the local cat rescue lady. I called her and asked if she had a cat for me. She came over that weekend with four cat carriers. Three had several kittens in them.My home had nine kittens running around. They were lovely but I didn’t want to keep any of them. The last cat was an adult cat in his own carrier because he hated the other cats. He had been a stray up until three days previously. He definitely had an attitude! He was sleek and black. Instinctively I picked him up and gave him a cuddle. I could feel the moment we bonded – I held him to my chest and he purred deeply right away. I called him Hieronymus Bosch Kitty Purkis II which got shortened to Mr Ronnie and then somehow morphed into Mr Kitty, which is how he is known to most people now.

Mr Kitty is the closest being to me in the world now. That bond is so strong. I have to board him quite often when I go away to give presentations and when I am without him I feel a physical void where he should be.

He is incredibly cuddly – but only with me.  We are a package – you want a Jeanette and you’re going to get a Mr Kitty in some form or another. My furry feline friend has had the most significant impact on my mental health of anything ever. Within a few months of his arrival my house had gained its current name and some artworks on the walls. I am now rarely anxious about my home which I would not have believed possible five years go. I am always content when cuddling Mr Kitty and when I feel bad I will old him close like I did that first day. He always purrs. My mental health care plan involves one third taking the right medication, one third my attitudes and thoughts and one third Mr Kitty and human friends and family.

Mr Kitty has transformed my life, He has been instrumental in me building mental health resilience and self awareness. He really is the best gift I ever received, My mum, who is one of the Autistic people who do not have a bond with animals – even she says Mr Kitty was a gift from God. I am inclined to agree with her.

Of course this isn’t just about me and my lovely furry boy. Many, many other autistic people respond in a similar way to their pets or assistance animals. So many autistic kids need their dog or guinea pig in order to get through life. There really is nothing in he world like the bond between an Autistic and their pet. I can’t explain why that is. For me I have always been drawn to cats. I understand them and they are a lot easier than most people to read and communicate with! But they also give me something transcendent. I a truly in another place when I am with Mr kItty. I look at his little face and I know him more than I can the human inhabitants of the world.

So thank you for reading this and purrs form Mr Kitty.

My friend and fellow Autism self-advocate Penny Robinson often mentions a quote from UK author and academic Rita Jordan that ‘The biggest gift you can give to people with autism is time’. This has certainly been the case in my experience. I think the audience who will respond best to this post is parents of older or adult  children – not just parents of Autistic children, but parents who worry about their child’s choices and the path they are taking through life regardless of their neurology. I hope this post gives hope.

I was going through photos of me at various ages and came across the one pictured here. This image was taken with my dad in Melbourne, where I lived at the time. It would have been either 1997 or 1998. I was 23 or 24 years old, and it was probably  the worst time of my life (despite me having a sparkly hat!). At the time the photo was taken I had just moved into a two bedroom house run by a charity. The house was for young women who identified as lesbian and who had just been released from prison – I fitted those categories quite neatly at the time. The house was perfect – I had the place to myself and I adopted the most cuddly cat you could imagine, who was the original Hieronymus Bosch Kitty Purkis – or Mr Kitty. I had a new pair of new Converse runners and all was apparently good with the world. My perfect world lasted all of a week before  I became  frightened and overwhelmed in the ‘free’ world as an institutionalised recidivist and did the thing I was best at then – committing random crimes to get arrested and go to prison. My house was lost as was my beautiful cat – he got cat flu despite me having had him vaccinated, and my support worker – one of those ‘mercy of strangers’  people who help but have no personal stake in where their client’s (or their cats’)  lives end up. She decided not to pay for vet treatment for my furry fella and he died.

That’s a rather sad story isn’t it? But it improved and one of the key factors for improvement was time. Criminal me was known for being completely without insight or self awareness. She was self-destructive, self-defeating, impulsive, violent, addicted and incredibly negatively focussed. Imagine the parents of  that young woman – my parents. They were anxious at the best of times and I am horrified to have been the person who unintentionally put them through the hell they undoubtedly encountered. Imagine that young woman’s mental health workers? Imagine the lovely clinical psychologist who diagnosed that apparently lost person with Asperger’s and then watched her miss appointments and refuse to accept the diagnosis and the assistance it could have meant for her, preferring the world of crime and drugs to the world of accepting herself as an Autistic woman.

Time alone did not address the issues I faced of course. People helped and supported me to get to a point where I could make positive, sensible choices.  I often give this example of people having a  major issue with their behaviour, such as a drug addiction. The person with the addiction issue is the only person who can change  their own behaviour. No one person telling them will be able to make them change. This might sound  a little hopeless, for if nobody can make them change and they don’t want to, what hope is there? In fact telling somebody going through addiction issues how much you love them and want them to stop using whatever substance or maladaptive behaviour, by offering genuine advice and support, you are putting in that person’s mind an alternative route so to speak. So they need to make the decision and make the change themselves but you can help them along their path. You might tell them 1000 times that they can change and they have fought and been angry and dismissed what you say every time but when the time comes that they are ready to make a decision to change, those 1000 statements from someone who loves them and cares for them are incredibly important.

I think maturity is about learning from your own mistakes and from others’ experience and stories. For those who care for someone having issues with managing life in whatever way, there are some points to consider.

• Never give up on  a person. I went from being a homeless, violent criminal to being a many times published author and ACT Volunteer of the Year (among other things). If my parents ever gave up on me they never let me know it and were always beautifully supportive. I imagine it cost them a huge amount to do this but, in our case at least, it paid off.
• Time itself is actually a protective factor. People’s brains do not tend to fully mature until around age 25. For Autistic people that maturing can happen later at around 30 or sometimes later. Much and all as I hate telling parents ‘wait until they are 30’ for their child to move beyond poor choices, in many instances that is in fact what happens.
• Things like mental illness can temporarily impact on somebody’s thinking and attitude. This can be frightening for parents and people that love them, but illness is often fleeting or episodic. Even if it is concerning, somebody needing to access clinical support for their mental illness can in fact be a step on the road to self awareness and understanding and the underlying issues being addressed.
• I have met parents who despair over their young adult daughter not finishing a course or getting a job. Much and all as I hate telling people to put things into perspective, as two different people’s pain or worry is not comparable, I think it is important to b aware of the continuum of challenging  choices and behaviour.
• So I suppose managing a life of difficult or counterproductive choices – of yourself or someone who you love – factoring in the time and experience element can give some hope and perspective. I feel for parents whose child is wandering on a dark path and I feel for the child too having been in dark places myself. The beauty of being me is that I try to model hope for those in dark places.

 

Assertiveness, limits, boundaries. All incredibly useful strategies for navigating life and staying safe from predatory people. In my own experience, I was almost completely unable to set any kind of boundary or limit until I was about forty.

Here’s one of many examples of when I could have used assertiveness but didn’t.

Between ages 28 to 32 I lived in public housing. I was aspirational – going to university and hoping to be able to move to somewhere nice and less dingy. My neighbours tended not to be aspirational – most of them were alcoholics. Being an Aspie social chameleon I was keen to be accepted by everyone so I learned how to fit in. My housing situation was all fairly grim but there was one factor which made it almost impossible – we shall call this factor Renee (*name changed). Renee was a rather sad and broken person but I struggled to sympathise because Renee was a stalker and worse still she was MY stalker. Renee had wanted to be my partner since I moved in. She would get drunk and aggressive and accuse me of things I hadn’t done. She would sometimes try to force herself on me sexually. She told me all my faults and then sang my praises, depending on her mood. I felt trapped by Renee. I understood that most people in this situation would set some firm boundaries but at that point in my life boundaries were as remote as Mars. I know they existed but could not reach them. Very occasionally – usually after she had been violent to me or a friend – I would tell Renee to leave and not come back. She knew me well as she would wait for a week and then knock on my door looking contrite and sad. I would ‘forgive’ her and let her back in and the whole thing would begin again. I spent almost four years haunted by Renee and when I finally escaped my supported housing flat I was haunted by thoughts of her for another three years after that.

This is one of a litany of my experiences where assertiveness and boundaries would have really helped and where I simply couldn’t apply them. I am not alone here sadly. I know a load of people who struggle with setting boundaries and enforcing them. Assertiveness is a useful but very elusive skill for so many people.

Autistic people often struggle with assertiveness, as do many other groups and individuals. I will just focus on Autistic people and assertiveness here but I imagine the things relevant to those of us on the spectrum are probably relevant to others too,

Some of the reasons I think assertiveness is so hard for Autistics  include:

• We often struggle to be accepted socially from a very early age, This can set us up to be strongly focussed on pleasing others and gaining friends. That can work well up until the point we need to set a limit or boundary. When this occurs I think many of us feel that our friend will disown us or not like us any more. So we go along in the friendship or relationship not speaking up the something goes wrong. Usually this is interpreted by the friend or partner that we agree with their actions – otherwise why wouldn’t we say something?
• Many Autistic people – and others too – have experienced bullying, abuse, violence, gaslighting and other invalidating and harmful behaviour from others. This impacts on a person’s sense of self, identity and self-worth. They may not even realise they have a right to stand up for themselves or if they do, they are afraid expecting further abuse. Often even if the initial abuse happened many years ago it may still be almost impossible for someone to stick up for themselves.
• Some people have spent a lot of time in supported housing or residential care  or psychiatric hospitals and institutions. The way these sorts of settings work is to ensure everyone does what is expected of them. There is often a very clear power dynamic going on in these settings. People in these places are generally expected to do what they are told and not ‘rock the boat’. This can make it almost impossible to set limits and boundaries, even if someone has been living outside of these settings for many years. It also raises a strong danger of abuse within the institutional settings.

Thankfully learning assertiveness does not need to be an insurmountable goal. There are a few things you can do to improve it. These include:

• Self worth. We often have low self esteem and self worth which can contribute to a lack of assertiveness. Consciously working on building your self worth is a good first step.There are things you can do to build your self worth, including being aware of how you describe and talk about yourself to others. If there are lots of blaming words and thoughts, try and consciously change how you view and talk about yourself. You can also do things like writing one positive thing about yourself each day and, if possible, spend time with people who value and respect you.
• Practice makes perfect. I find when improving my own assertiveness, it was quite an incremental process. I didn’t start by standing up to a bully, I started by standing up to tradespeople and telemarketers. Each time I did this I grew in confidence and my resolve to be assertive in the future grew too. I can now set limits and be assertive in a number of situations and it is wonderful. I thought I would never achieve this.
• Some people find working on assertiveness with a psychologist or other mental health worker is helpful.
• There are a few simple tricks around practicing assertiveness which if you use them will hopefully make the experience a positive one which you can build on. These are:
  • Before the conversation, make sure you are aware of things which might be going on for the person you wish to set a boundary and / or be assertive with. If they are catering for a child’s birthday party and have 35 six year-olds coming over in less than two hours, it’s probably not going to be a time they are receptive to you setting a limit.
  • Not only pick your time, but pick the way you have the conversation, taking into account your own needs and the other person’s preferences. If you dislike phone conversations, using the phone  might increase your anxiety so it might be worth meeting face-to-face or via email. And if the person you wish to set the limit with doesn’t respond well to email – or whatever – maybe don’t use that medium.
  • You can run through what the issue is and what you want to say to a friend, partner or family member, preferably one who is not involved in whatever the problem situation is themselves.
  • Use ‘I’ statements. Start from the position of ‘owning’ your concern rather than saying ‘when you did this thing it upset me…’
  • Don’t blame the other person. Set out what they are doing which is causing you difficulty as objectively as possible.
  • Describe the outcome you would like and if possible ways you and the person you are speaking with might be able to get to that point,
  • Remember that people who like and respect you tend to respond well to an assertive, respectful conversation.
  • Allow yourself time to debrief after the conversation, either just by yourself or with a friend, partner family member or talking to your pet.

This post is me musing on my concerns as science starts to understand more around Autism and genetics and what the implications of this might be.

I am Autistic. I was born in 1974 and diagnosed 20 years later. As a child and teen I was ridiculed, bullied and hated. I felt alienated and on the outside of society until I was about 30. If someone had told me I was Autistic when I was a child my life would have been different. If you had said to me ‘I can cure this’ I would have jumped at the chance to have what I thought was a ‘normal’ life. I imagine my parents – one of whom is now diagnosed as Autistic and the other fits the ‘broad Autism phenotype’  description – I reckon they would have chosen to cure their daughter who struggled to fit in and live a usual sort of life. Flash forward to 2017 and if I were offered this ‘cure’ to make me non-autistic I would say a clear and emphatic ‘no!’ Many of my Autistic friends have also said they would decline being ‘fixed.’ For me, this is because I don’t know what a non-autistic Jeanette would be like. I have never been that person and I like who I am now. I have got through countless struggles and dramas and have become quite wise and sensible, and my Autism has contributed to that rather than detracting form it. My Autism comes with gifts – I can write anything. I barely edit as the sentences and paragraphs just pop out of my brain and onto the page. And one thing which might be a little controversial is that I wouldn’t desperately want to be non-autistic because I don’t like the communication style they use.  What I say as an Autistic is the words and the meaning. There is nothing else going on. There are not multiple layers of meaning in my words, or micro-expressions with my face betraying to other non-autistic folks that I didn’t mean what my words said. I don’t like this kind of communication and in fact I often view it – albeit in a rather tongue in cheek way – as perhaps one of the deficits of ‘neurotypical disorder’.

I am not proposing that all elements of Autism and good and worthy. Autism can be extremely hard – as I know myself – but in my mind teaching Autistic children and adults strategies to navigate the world and supporting them to do so is a much better idea than ‘curing’ Autism and wiping us out of existence.

Of course there is currently no ‘cure’ for Autism. This article is based in speculation but it seems to me that science and research may turn up something in coming years which changes the Autistic brain into a more typical one. I do not look forward to this.

The notion of causation around Autism is something  which has been occupying the minds of researchers, parents and clinicians for a very long time. If they could just find the Autism genes or epigenetic factors they could provide a ‘cure’. Despite perhaps sounding promising, this has some pretty significant negative connotations attached in my mind. Here are the reasons why:

• Focussing all the attention for Autism research on causation and potential ‘cures’ is not much use to Autistic children and adults in the here and now.
• It can be hard for parents and  / or Autistic people to discern the useful research from the charlatanism. As in any ‘industry’ parents of Autistic kids are frequently preyed on by charlatans interested only in making a buck. Some of these ‘therapies’ are in fact dangerous, such as bleach enemas (now thankfully outlawed in many places) or just shamelessly grubbing money from people desperate to make their little person’s life easier to manage (e.g. $35 a litre for camel milk is one I have cone across.) There is a lot of pseudo science and downright unscientific rubbish (anti-vax anyone??). These things actually tend to harm Autistic people and our families and distract parents from helping their children with useful interventions.
• Another issue I have with ‘cures’ for Autism is more philosophical but also very important. Imagine if there was a prenatal genetic test mums could take to find out if their child is Autistic. The mum takes the test and is told how she can ‘cure’ her unborn child’s Autism using genetic therapies.  How many parents do you think would elect to keep the Autistic child or not cure their child’s Autism if they could? I would hope it would be a larger number than it probably would be. Then imagine there was a way to fix all the genetic diseases, and all the other apparently ‘undesirable’ traits in our human genome? Doesn’t sound like a very nice world does it? If anyone has seen the film Gattaca they will have seen a glimpse of this – designer children and disease and difference confined to those too poor to afford the ‘fix’. This option sounds far off but I’m not sure quite how far off it is. It is certainly a future many people have speculated about and is basically Eugenics. Instead of showing people to respect difference it would involve eradicating all the difference, Absolutely makes me shudder.
• And on that point, from a purely economic and social view Autism comes with some incredible, useful skills, talents, philosophies and experiences. How many Autistic people (diagnosed and undiagnosed) are working Silicon Valley? How many great writers, inventors, actors, musicians, engineers, botanists, medical doctors,  ethicists, etc etc etc in the past and present have been Autistic? A great many of them. To deny the world the gifts of Autistic people would be tragic indeed.
• If a ‘cure’ was administered and no new Autistic babies were born, can you imagine what would happen to the millions of us still with the diagnosis? If observations of other health conditions being ‘solved’ (and i use that term in a very ironic sense), pretty much all the funding and support and services may well be under question as society’s attention is diverted to another health problem which instal viewed as being ‘fixed’ already.
• One of the key issues that face Autistic people in relation to ‘cure’ thinking is that most people view Autistic children as the face of Autism. Autistic children – like typically developing children – are not yet mature. So the people who would make decisions over whether or not to ‘fix’ their child’s autism might not know about Autistic adults and how we change from children. It’s a bit like trying to imagine a five year old working as a lawyer next week!

So if a cure becomes available I hope people are considering these kinds of issues because they are very real. I’ll just pop in the much-used and very accurate Professor Temple Grandin quote saying ‘We are different, not less.’ (And if you don’t know Temple, she is Autistic and is the world’s leading expert in some areas of animal husbandry and was listed as one of Time Magazine’s 100 most influential people.)