I was scheduling some of my daily memes for publication on social media today and realised that it will very soon be 2 September. ‘Oh no!’ I thought and started dredging through some of the more unedifying parts of my personal history. Oh no indeed! On Saturday 2 September 1994 I went from being Jeanette the negatively focussed communist art student to being Purkis – 102604 – prisoner. It is a long and sad tale….and one I am not going to write here. And this is why…

A few friends and colleagues have noticed me discussing my past and all that came with it rather more often of late. Two people I really value suggested that maybe the time has come to bid farewell to that part of my life. Not write or speak of it in any more in my advocacy work.  Put it to bed, lay it down to rest, give it a good send off by no longer defining myself by it.

I think this is an excellent idea, but a very challenging one. The first three slides in any presentation I give will include a Jeanette now slide (overachiever etc), a me then slide (prisoner, drug addict, homeless person) and how I got from there to here. It is my standard. But maybe my standard is tethering me to a place in the 1990s where I don’t actually need or want to be? Do I need to exist in relation to this period in my life where I was in fact very different? I may have succeeded in many ways by reflecting on the past and distancing myself from it, but maybe the time has come for me to let it go. I have spoken and written about it on and off for many years. It is an anchor point for my life and my work. I always thought of it as an example that people can change and grow, which it is. But am I changing and growing by constantly defining myself in those terms? Is my criminal history relevant to anything I do now in my paid or voluntary work?

I think I am in fact doing myself something of a disservice by focussing on this. Yes, I used it as a point to push off from but the period between my life of poor choices and even poorer behaviour and me now is between 18 and 23 years. The space between my criminal history and my recent history is 18 years old – the age of adulthood. At age 18 one can vote, drive and legally drink alcohol so maybe I should ask it to metaphorically move out as well?  Criminal Jeanette is a ghost in the past and the only house she haunts is mine.  I have the right to exorcise that ghost, let her go. I really do not need her living with me any more.

This approach to my past is very liberating but also quite concerning, My mature character has never lived without the ghost of my past floating around questioning my validity and capability. I don’t know if the exorcism will be a relief or an ordeal. All I know is that I have some amazing friends and mentors who see me as I am now. They don’t know that previous me. The only conduit between them and her is what I wrote in my autobiography – written in 2005 in another world – and what I speak of. My criminal history  has no bearing on what I do now and has in fact never stopped me from working or getting a working with children card or any practical thing at all. In applications for such things I write what happened, why it happened and why it will never happen again and then throw in a copy of my autobiography and some character referees and then be prepared to quite rightfully and understandably answer some questions. That is it. That is the only way my past impacts my present. If employers and licensing bodies can see past my past to who I am, why don’t I do that too?

So on 2 September I will have a little wake for my past. I will bid her farewell and leave her in my memory and the pages of my autobiography and go on to live my life free of her constant presence. It seems liberating and a little scary but I have friends who know me as me and Mr Kitty who sees through most things and my writing and work. I think I will like life as just me.

Imagining that the path ahead is, well sparkly and shiny and quirky

“My support worker told me I would never be able to work”. So wrote an Autistic person on a thread on my social media yesterday. Needless to say I was horrified but sadly not all that surprised. Autistic people are constantly told that we can’t do a range of activities which are important for independent living: things like education, employment, relationships, having children or owning property. Employment tends to be the element closest to my heat and it always sadden and agers me to see Autistic people effectively written out of the job market before they even start looking,

I was unable to work for many years for a number of reasons. In 2007 after building my capability and confidence around work I joined the public service as a graduate. Starting a new job in a new city was terrifying but wonderful. I soon realised that I loved my job and have done so ever since. Professional suity Jeanette is a given for people who know me now, but when I was long-term unemployed and living in supported housing the only image of success I had to guide me was my own aspirations. The manager at the Autism-specific employment service I used (which no longer exists) actually told me they thought work was stressful for Autistic people and. his service did seem to do a ‘good’ job of ensuring their customers remained unemployed! As you might expect, I received very little assistance from this service in finding a job. When I applied for my public service role several friends – including some Autistic ones – told me I wouldn’t be able to do it. Even after I had been working for some years and found myself an inpatient in the psychiatric hospital, many nurses advised me to quit my job and go on the disability pension. My job pays many, many times more money than the pension and I have a mortgage which I wouldn’t be able to afford on the pension so this was very poor advice even on a purely practical level. The point at which I would give up work is the point where it really is totally impossible to work even an hour per week. Being given that ‘advice’ by people in a position of trust horrified me at the time and continues to do so. What if I had listened to them? In fact I ignored their advice and was well supported by my employer. I have been back on full-time hours for many years.

These issues run deep. Not only are Autistic adults discouraged from working, parents are told that their Autistic children will never work, never complete school, never have a partner or be a parent, never drive a car, never live independently…never, ever never. These nevers tend to become a self-fulfilling prophecy. If you are told you or your child will never do something it usually means you will be denied the opportunity to try or at least be discouraged from trying. This will result in you not doing the thing and therefore people who know you – and often you yourself – will believe it was impossible to do that thing. I mean, ‘you didn’t achieve it, so you must not have been able to’ can be a convincing, if incorrect, argument.

One of the difficulties around this sort of negative messaging is that it often comes form people in positions of trust – clinicians, support workers, teachers, etc. People place their trust in those occupying such roles and so what they advise is often taken very seriously.  In fact if those in positions of trust talked about the skills and talents of Autistic people, and ability to fulfil our potential, it would make a huge positive difference. Autistic people have as much potential as anyone else does to lead a fulfilled life but the negative messaging we receive often from an early age can significantly damage our confidence and the confidence our families have in us. If is wrong to deny that possibility before it even occurs by only focussing on the negatives and challenges and assuming these will preclude Autistic people from doing the things which others do.

This is not to say that Autistic people do not experience challenges and difficulties in the workplace and when looking for work. Support is needed here particularly as some employers and workplaces are not well-informed about Autism, which impacts on our ability to get a job or stay in work. One Autistic advocate recently suggested that unemployed Autistic people should ‘get off their butt and find a job”. I do not share that view, particularly as I know just how hard it can be and what a journey finding meaningful work (or any work actually) can involve. There can be all sorts of barriers to getting and succeeding at a job which Autistic people can face. I do think our aspirations to employment should be supported by those who are meant to help us though. And just because there ar barriers and challenges does not mean people will never work, just that they may require appropriate support and encouragement to overcome those barriers. If it were just a matter of ‘geting off our butt’ I think most of us would be employed, particularly as every thread I see on social media about employment has lots of Autistic people saying how hard it is to find and keep work.

When I was long-term unemployed I was fortunate to be driven by the fire of my passion around finding work, along with a good whack of self-confidence, a supportive family and a curious but helpful ability to find the value – however small – in substandard support services.  My understanding is that those qualities are unusual and so others who aren’t me have a greater need for positive messaging  and genuine support to achieve goals from people in their life who are meant to be helping them and whose opinions they value. Support and validation is always going to win out over dismissal and negativity. And I do not ever want to hear someone saying that an Autistic person – or any person for that matter – will ’never work’

My Wonderful Word of Worky Workbook

I am told that when I was nearly two years old my mum took my brother and I from the UK to Australia to visit my grandfather who was dying. For whatever reason my dad stayed behind. We were away for a couple of months. When I returned home I was terrified of this scary man with a beard who was giving me lots of attention. It was my dad but in the time we were away I forgot what he looked like. Like many autistic people – and some non-autistic ones too – I have prosopagnosia, which is also known as face blindness. It means that I struggle to recognise most people by looking at their face.

As a child of the seventies and eighties I did not have an Autism diagnosis as such a thing was not available. Hans Asperger’s writings were not translated into English until I was in my last couple of years of high school and Asperger’s syndrome was not an official diagnostic description in the English-speaking world until after I had moved out of home. I spent my teen years thinking I was the only person like me in the world and I couldn’t imagine other people shared my experiences of things like prosopagnosia. In fact my face blindness was one of the things I found most embarrassing as a teen and young adult. I really couldn’t work out who people were most of he time, even people I had known for some time. With a few exceptions, everyone looked indeterminate. There were two girls in high school who to me looked identical but they weren’t even related. They just had the same general ’feel’. Unfortunately they were two of the worst bullies in my year and exploited what they presumably saw as my weakness which made me more stressed and ashamed of my ‘oddness’.

When I was an adult and started university I had the same issue. I know everyone’s name and had a huge store of information about each of my fellow students lives but if I saw them outside of class  – ad even sometimes during class – I wouldn’t have realised I knew them. As soon as I worked out who they were I was fine but I often couldn’t tell that from looking at their faces. I had never heard of anyone else having this issue so I assumed I must just be weird. It always worried me though, particularly as people would think me rude for apparently not remembering them. I actually knew them really well, just not by looking at their face.

I have done a little reading on prosopagnosia and apparently it is a brain wiring thing. Therefore it is not something I can change or improve because those connections just aren’t there in my brain. Apparently someone with prosopagnosia processes facial information in a similar way tat most people see inanimate objects, Could you imagine discerning one table from a mental store of hundreds of tables? You might remember a particularly distinctive one but most of them would seem similar to each other. That is what it is like for me with people.

I used to try and work out who someone was by engaging them in conversation and working out their identity through context and what they said. This worked well for much of the time but even when I was doing this I felt I was doing myself a bit of a disservice. Prosopagnosia is part of me and I am much more comfortable if I can be up front with people and explain I have issues recognising faces rather than agonise my way through a conversation trying to remember who they might be ad not make it obvious I have no clue who they are.

These days if I don’t know someone by looking at them I usually explain to them that I am not being deliberately rude but I have issues processing faces. I will say something like ‘Have we met before? I have face blindness and find it hard to recognise people’. It makes my life a lot less stressful and helps others understand that this is an experience  that a number of people have. In order to say outright that I have issues telling faces apart took me a long time and reflects my level if confidence with who I am at the present time. If I was ashamed of my ‘differences’ I would still keep my experience silent and feel like it was a failing of character rather than my brain being wired differently to most people’s. I am delighted to be able to ‘disclose’ my difficulty (and I don’t  really like that term ‘disclose’ – I mean prosopagnosia or autism or other neurological differences aren’t a criminal offence or a dirty secret in need of ‘disclosing’ but it is the word most of us seem to use in the absence of a better one).

I wonder how many people don’t feel confidence to explain to their challenges in recognising faces for fear people will think them weird or rude? I like that the we have recently as a society became a bit more able to talk about neurology and disability and mental illness and other brain-type things but there is still a way to go. I hope when I explain to someone my issues recognising people that it encourages others to speak up too. In a world where these things are treated as shameful or outside the ‘norm’ then people will feel isolated and as if they can’t talk to anyone about this ‘difference’. I would love for people not to have to hide things like prosopagnosia. I’m glad I decided not to be silent about my challenges knowing human faces. It is not something I can help, after all.

…. And in case you are wondering, I can recognise most cats. I haven’t seen any research about people with prosopagnosia and animal faces though

My name is Mr Kitty and I live with my human. Her name is Writer or Worker or Lovely. She is the best thing – along with cat food of course. I remember before I met my human. Life was cold and wet. There was nowhere warm to sleep. I huddled up in corners and garages and dry places when I could. I didn’t have any home and no humans cuddled me. I had to kill my food. I didn’t know if I would eat or not. My life was cold and scary. Other cats and dogs chased me so I got angry when I saw them and hissed – they might run away then.

One day I was near some houses. There was a delicious smell of fish which I went to investigate. It was in a bowl in a wire box. I ate it and then I was trapped. I was so scared but after some time, when it got light a human came and brought me inside. She seemed surprised it was me, like she expected a different cat. She scratched me behind my ears and called me ‘sweetie’. It was nice. Another lady came and took me to my human’s house. This new human looked at me and her face was kind. Then she picked me up and held me tight to her chest. She scratched behind my ears and talked softly to me. I snuggled in and purred. At the moment we belonged to each other. She was my human and I was her Kitty.

My human goes out every day. She gives me cat food and I watch as she goes out the door. She comes home ages later with cuddles and cat food. I used to worry that she wouldn’t come back but she always does. Sometimes she is tired when she comes home. Sometimes she is sad – so sad I can sense it. I always give her cuddles and purrs then and it makes her happier.

My human is Public Speaker Advocate Writer. She spends a long time on the computer making and practicing her talks. I sit at her feet while she works. She will bend down and pat me and I smooch her hand. I think she needs my support to do what she is doing. She always has cuddles for Kitty.  She holds me like a baby and I purr and purr. So nice to be safe and warm and with cat food every day.

People come to my human’s and my house a lot. They always want to talk to me but I don’t aways talk to them. The other humans smell like cats and dogs and guinea pigs. I like the other humans but I don’t know them as well as my human. Sometimes I smooch them or stand on their laps and they are really happy, just because I said hello to them. I think I could try to talk more to the other humans but I don’t always trust them.

I am my human’s kitty and she is my human. You get one of us then you have the other one too. We are closer than anything. I know she won’t bring other pets into the house and she knows she can trust me to be loving. Sometimes she gets annoyed when I ask for cat food by biting her feet and knocking her human phone off the desk. She says ‘you’re a little bugger! Good thing I love you or I’d turn you into cat meatballs!’  But I know she doesn’t really think that. It is like a game we have.

My human goes away a lot, Her friends come over and she puts me in a carrier and then in the car and we go to the cat boarding place together. I used to be scared at the cat boarding place but i like it now. the humans there love Kitty but i always make sure they know I am in charge. I is Kitty after all.

I am always happy that my human wanted me to live with her. She says I am the most beautiful and unexpected gift. She tells me I am the best thing in her life. And I think the same. Kitty needs his human  but human needs her Kitty a lot. I have a big job looking after my human but I like doing it.

A colleague told me many years ago that a fellow employe had told her ’Jeanette shouldn’t say she has autism. She is very mild’. Aside form the inherent rudeness in such a statement about me to a third party, that little statement encompasses one of the most significant issues Autistic people can face: ‘Mild’ and ‘high functioning.’ These are labels applied to us, usually by non-autistic people, which apparently describes many Autistic people’s experience of Autism on their behalf and often ascribes a bunch of judgements and assumptions along the way.

The idea of high or low functioning Autism probably started to gain traction when Asperger syndrome was included in the DSM IV diagnostic manual which was published in 1994. I was diagnosed with Asperger Syndrome shortly after that. As I went through life and more people learned about Autism and Asperger’s I got given the ‘high functioning’ label. There were expectations with my ‘high functioning’  which I quickly noticed were very different to the expectations given Autistic people who had more need of support with day to day life and / or those who did not speak.

To my understanding there is no clinical descriptor called ‘high functioning’ and ‘low functioning’ Autism although some diagnosticians use them as a sort of rather unhelpful shorthand.

So why do I – and many other Autistic people – struggle with the high or low functioning labels? Well I can’t speak for others but my issues are many and varied. I will use the example of a friend who has tow Autistic sons. The younger son does not speak much and requires assistance for practical things. He is a lovely boy. His older brother, also a lovely boy, is more like me – articulate, speaks a lot and doesn’t need assistance for most practical things so much, but struggles with anxiety and being bullied. My friend says that almost universally, her younger son is underestimated and her older son has his difficulties dismissed. These functioning labels and the expectations which so commonly go along with them are really unhelpful for her sons. They mean that the younger boy is likely to struggle to get the opportunity to do all that much even if he is capable and the older boy will be expected to not ask for – or be given – much assistance, even when he needs it.

My thoughts on some of the specific issues in this are:

• Functioning labels privilege experience. The experience of the ‘low functioning’ person is usually viewed poorly and the skills of the ‘high functioning’ person are praised but their challenges missed or dismissed. For some people they may be twice exceptional / gifted but be utterly miserable, destroyed by anxiety, the cruelty of others or self doubt. Gifted people still need support. The fact they have unusual skills in one area does not necessarily equate to the capacity to manage other elements of life. I spent some time in gifted programs when I was in primary school but I ended up in jail when I was 20.That may be an extreme example but for me all I thought about being gifted when I was informed about it was that bullies harassed me at school because I was a nerd. I wanted to have less intellect so I could be like the other kids but there I was reciting poems about the end of the world in year seven!
• Functioning labels can also be used as a divisive thing. I have been told on a few occasions ‘You can’t speak for my child. You are high functioning.’ (thankfully this doesn’t happen a lot). I prefer to support commonality rather than focus on division. And no Autistic advocate really speaks on behalf of another Autistic person. We share our experience and knowledge in the hope that others – Autistic people, parents, clinicians, educators etc – will draw some insight and awareness from our knowledge.
• Low functioning labels in particular can be incredibly misleading. Many non-speaking  Autistic people are highly intelligent. And many non-speaking people describe the experience that before they had an effective method of communication, they were observing the world and experiencing things as others who speak do. I am horrified to imagine what some people must have witnessed in terms of put-downs, insults, disrespect and ableism said right in front of them.
• I always think functioning labels come from the basis of  ableism and discrimination. The functioning labels model seems to be based on deviation from a notion of ‘normal functioning’. In such a model a non-autistic person is the yard stick for measuring Autistic capability. In this model presumably there is the ‘norm’ represented in the neurotypical person, then the ‘Aspie’ who seems more ‘normal’ and then the ‘low functioning’ person who supposedly is the least ‘normal’ of the three, on the outer edge of capability. I’m sorry, but from a perspective of neurodiversity and inclusion and as someone captured in this model this horrifies me. What is this ‘normal’? And why am I and other Autistics based in terms of deviation from this? In my mind, we all have skills and attributes and difference is certainly not ‘less’.

One issue with the functioning labels is that many people find them a neat shorthand to describe their child, their student or client or sometimes themselves. I think though that this shorthand is problematic as the high and low functioning descriptors don’t exist in the diagnostic literature, Now bear with me here. I do not subscribe so much to the medical model of disability so I am aware a description in a diagnostic manual does not actually define our experience. But the clinicians and from them educators and all others who support Autistic people at some point in their journey have the diagnoses listed in the DSM 5 diagnostic  annual. So if they use this additional ‘high functioning’ or ‘low functioning’ which isn’t in fact defined anywhere people think it is official. But there is no definitive list of high or low functioning . The descriptions are arbitrary and subjective. Each person applying these labels is just applying them based in their own individual beliefs. So while the medical model of disability is problematic in describing our Autistic experience, the functioning labels are even more problematic as there is no way to determine what they actually mean other than the ‘feel’ or ‘vibe’ of the person applying them!

I would love for us to get rid of the functioning labels. Each Autistic child or adult is a unique individual. We fit within the broader umbrella of the Autism spectrum but beyond that we are all different. Rather than clarifying understanding of how best to support us, the functioning labels are likely to do the exact opposite.

I am going to start this Autism-related post with a mental illness example. Bear with me, I promise I’m not conflating anything and I know that Autism and mental illness are not the same thing (you would be surprised how often people feel the need to point that out to me as if as an Autistic woman I am somehow letting the side down by having schizophrenia!). It’s just this example demonstrates the attitudes around deficits thinking quite neatly and in a different context to my usual one.

In 2012 I was living in a residential mental health service. There was a lovely young woman who saw me as a bit of a role model. She would politely knock on my door and ask if it was OK to ask me a question, which I would always respond to the best of my ability. One day she knocked on my door and told me she had just been diagnosed with schizophrenia. ‘What does it mean? she asked. ‘Will I have to stop doing anything? Can I work?’ Having met her very critical, judgey father and knowing how the mental health professions tend to treat quiet young women with schizophrenia I responded with ‘It doesn’t have to mean anything except what you decide. People with schizophrenia work and raise families and study and everything else. Life is often harder but don’t listen to people telling you what you can or can’t do. Only you know yourself.’

Deficits thinking, an assumption of incompetence: these things cross different groups. Autistic people get a lot of deficits talk, assumptions  and negativity around our potential too. When I applied for two graduate public service jobs in 2006 – one of which I was successful in – a wide range of people gave me deficits thinking about the apparently preposterous idea that an Autistic person could work in Government administration. One friend who is Autistic even told me I shouldn’t bother applying for the jobs because they weren’t autism friendly. I think I responded with ‘Well I had better make them autism friendly then!’ These attitudes run so deep.

Deficits thinking and an assumption of incompetence can have the following impacts:

• There is a concept in disability advocacy and service provision called the Dignity of Risk which means respecting a person’s autonomy and self-determination to make choices for himself or herself. Deficits thinking and assumptions of incompetence can also result in controlling or paternalistic behaviour form services, family and carers. It is hard to build your independence when everything you do – decisions and choices about living your life – is controlled on your behalf without asking your wishes. This often happens to people who require more day-to-day support and / or do not speak but can happen in a variety of settings and to different degrees of magnitude.
• Deficits thinking and assumptions of incompetence vary in scale and scope. Autistic people who are living independently and working can still experience these unhelpful attitudes.
• The self fulfilling prophecy effect. This is when deficits thinking and an assumption that Autistic people are incapable of certain things means that Autistic kids and young people especially are often not challenged or stretched. For example if 16 year old Tracy wants to take driver education but her teacher and / or parents don’t want her to in case she is a careless driver or they believe the process of going for her licence will be too stressful, then she doesn’t get a chance to try. So when she doesn’t drive it may be assumed she was unable to rather than that the truth being that she didn’t have the opportunity to try.
• People can internalise the negative messaging around the capability  and lack of confidence in themselves. This messaging come from all over the place – popular culture, in accessing disability or other services, or from friends, peers or family members. They think there is no point applying themselves to anything because they have no chance of succeeding. This is one of he worst kinds of self criticism and can effectively keep someone from achieving what they would like to.

I will finish with another example from the book of Jeanette.

I was not diagnosed  with Autism until I was 20. I had lived out of home for three years at the time of my diagnosis and was residing in the Women’s Prison in Melbourne. For many years every decision was made for me. I was institutionalised. There was no dignity of risk but just counting days and months and years in a hellish world.

After five years of this I was living in supported accomodation for people with mental illness. There were fourteen of us in a crumbling mansion. There were staff there during the day. We were not allowed to drink alcohol in the house. We had to attend all the group meetings, we had to do gardening once a week. I was accepted to University while living in this accomodation, which was described as psychosocial rehabilitation. In order to be allowed to stay in my accommodation and study my uni course I had to make sure I could attend at least one meeting at the house. I had to provide receipts for my food. The social workers were much worse at maths than me and there were always arguments about my receipts where I tried to convince the staff I was not fraudulently claiming amounts – stressful and infuriating all at once. It was the only accommodation option I had.  Poverty plus disability ad mental illness apparently means no choice where you live.

Flash forward a few years in the Jeanette narrative. I own my home, I work in a high level job. I willingly support so many other people. I am an author, pubic speaker, active social media commentator. Could you imagine somebody telling me that I can’t have a glass of wine when I get home from work? Could you imagine someone in authority over me saying my job, which I have loved almost every day since I started over ten years ago, was too difficult and stressful and force me to quit? Could you imagine if I applied to speak at a conference and the organisers told me it would be too stressful for me so they would decline my application? No. It would be foolish and quite insulting  but I have been in each of those situations – and sadly many similar to those – in the past.

Just as it would be foolish to underestimate my capability, it is a terrible and unhelpful thing to assume others cannot achieve their goals, that they should be shielded from any challenge or difficulty despite them wanting to do it. We will never know our true capability ad potential until we experience it. Enough of this. Really, enough. It’s high time to see people’s potential and not focus on what others assume they can’t do,