Happy Mothers’ Day – why I love my mum and her ‘different not less’ parenting

I am not usually big on celebrations like Valentines Day and Mother’s Day. They seem a little bit arbitrary and a reason to sell things to people – sort of making love commercial. However a lot of people find meaning in these things so it’s not really my place to belittle the meaning they experience/ Lots of people have asked today if I will call my mum for Mothers’ day. In fact I am unable to call due to her rarely using her phone and being on holidays in Borneo with my dad and their friends. I will send an email tonight and hope she gets it at some time in the next little while.

Mother’s Day has had me thinking about all things parenting, and particularly my work in the Autism community. If people don’t mind a non-parent reflecting on things relating to motherhood than please read away – and don’t worry, I don’t do judgement! In fact judgement is one of the concerns Autistic parents face (and let’s face it probably most other parents too). Just yesterday I read a post on social media saying parents should punish their Autistic kids for having a meltdown. How many bystanders have judged – either internally or vocally –  parents of Autistic kids because the kid is having a meltdown? Judgement is so easy to do also very unhelpful. What happens if a meltdown is punished? Well as the kid almost certainly didn’t want to have it and it was a response to overload, because at the moment where overload turns into meltdown they could not control it, it wasn’t a  choice and it was certainly not poor behaviour. If something like that is punished as if it were naughtiness, then the child will probably internalise a lot of self-doubt and be more anxious – and maybe more liable to being overloaded and having more frequent meltdowns. Punishing child for a meltdown is like punishing a child for vomiting –  each process is unpleasant but needs support and love not blame and punishment.

Back to Mothers’ Day. My mum is an Autistic parent of at least one Autistic child. When I was was little I was always aware of my mum’s anxiety around parenting. She was insecure and never said anything nice about herself. As I grew older I noticed how my mum was treated by some of the other parents. Even relatives would recount apparently inappropriate things she had said and done when I was a child. In my early adult years when I was struggling to even exist, many women told my mum such unhelpful things as ‘I would have been a better mother for Jeanette’. That statement has always sat very uncomfortably with me. I can only begin to imagine what my mum and dad went through when I was my troubled former self. Surely that was bad enough without random women wanting to take me from my mum?

My mum, for the record, was the very best parent I could have had. I have seen presentations on parenting but Autistics and my family seemed to fit quite neatly into the sort of parenting style.  Like everyone else, Autistic parents tend to do some things well and find others more challenging. Autistic and non-autistic parents share this. One is not better or worse than the other, at least in any general sense. Autistic parents tend to be a great confidante and supporter for their Autistic children but they are often judged by other parents because their parenting looks ‘wrong’. Things like cognitive rather than emotional empathy and love can apparently look like they are not close to their kids. There is that other thing where parents are judged on the behaviour of their children. So if a child has ‘odd’ or difficult behaviours, the parent can be blamed, even if the behaviour isn’t negative but just looks a little strange to non-autistic eyes.

When I was a child, ‘parent’ was always a noun. Parenting wasn’t really a ‘thing’ like it is now. I can only imagine the misery my mum would have gone through these days with so many people considering themselves a parenting ‘expert.’

So here is list of some of the wonderful parenting things my supposedly ‘deficient’ mum did:

  • Listening  without judgement to me. For many years, I would watch my mum ironing – which she loves (that gene evidently  wasn’t passed on to me!). We would stand there for ages even night, me talking through stuff going on in my life and reflecting on things I had done and thought recently. There was no judgement ever.
  • When I was in my twenties and a drug addled homeless prisoner person, my mum  – and my dad – stood by me and supported me the whole time. This was not some anomaly or once-off event. This time in my life went for almost five years and my mum and dad were always, ALWAYS there for me.
  • When I was little my mum would explain what she knew of people’s motivations and social conventions which I wasn’t quite sure about.
  • When I was unwell with mental illness between 2010 and 2013, my mum came and stayed with me several times. She was just beautiful. I remember hearing her talking to the crisis team and saying ‘I am so hopeless on mental health stuff’. I then heard the voice on the other end of the phone saying ‘no, you’re doing really well.’ I suppose my mum thought she was doing badly at supporting me because she hadn’t fixed my issue but she was doing the best job just sitting with me and being there.
  • At around that time, I was i the  surgical ward of the hospital having had surgery. I was very helpless and was also having a horrible time with my errant, mentally ill  brain. One of the nurses was bullying me. I couldn’t speak but I had my phone and texted my mum to say what was happening. She came up to Canberra right away and advocated for me. When I went home she wrote  a letter to the CEO of the hospital and the outcome was that staff on that ward were sent to do mental health first aid training. My mum says if anyone is horrible to her kids she turns into a mamma tiger. I love tigers!
  • Earlier this year In invited my mum to the ceremony for the ACT Woman of the year in which I was a finalist. Having her in that audience was amazing. I don’t want to descend into schmaltzy cliches, but my mum has always been my strongest supporter and great friend.

It would seem that Autistic parenting is different not less. Thanks mum for being you. Happy Mothers’ Day.

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With my lovely mum at the ACT Woman of the Year awards this year

Finding your Why? – The value of motivation

I have spent the last few days having a wonderful time giving presentations about Autism and resilience, education to work transitions and mental health and Autism to a variety of audiences in Adelaide, South Australia. I had the absolute privilege to meet some students in a transition centre. They were there because they had become disengaged from education. They had struggled to stay in school and were at a critical point in in their life journey -would they became disengaged from society as adults or would they work towards a life where their full potential was reached – whatever that may be? My audience yesterday was about eight young men. I think they were all Autistic. With presentation to kids and teens I am acutely aware of the fidget factor – you can tell when you start to lose them to boredom and at that point it is best to either change the format or to stop altogether. I had prepared a bunch of content but didn’t think I was going to end up using much of it.

It turned out I had assessed this situation a bit pessimistically. The young people were a wonderful audience and they participated and listened for at least a hour – although some took attention breaks for a bit, which was fine. Most of them asked questions and as I only presented a little of the prepared material, most of the session involved a conversation  on employment and further study driven by the teachers and me. At the end, three of the boys wanted a copy of my employment workbook. I have never had teens wanting my books at events. It is usually their parents who buy a book and then presumably convince their kid to look at it. I was told that one student got on public transport from his school and travelled to the centre to attend my talk, despite not having been there before and knowing none of the other students. That is a big feat for any kid but for an Autistic student who was experiencing difficulties at school, that demonstrated a high level of commitment to a talk which (hopefully) would impact his future.

The purpose of this rather lengthy reflection is to frame the concept of a ‘why’. These students who were at risk of not completing school demonstrated a very strong motivation to see a presentation from an Autistic adult who works full-time in a professional job but has come from some very difficult and dangerous places prior to that employment journey. The teachers I spoke to afterwards were all incredibly impressed by this response from their students. Having given a lot of school talks I am aware the level of engagement at the presentation yesterday was quite unusual. So what makes people do something out of the ordinary like that? I would suggest that this was based i a sense of ‘why’ or as it is often called, motivation. These students may not have had that strong why to do their usual classes but an Autistic adult speaker presumably piqued their interest.

Motivation is a topic which interests me, mostly because I have a ridiculous amount of it. I have worked in my current workplace for over ten years. Apart from when I have taken sick leave, I have never – not once in ten years – woken up and thought ‘oh, I don’t want to go to work today.’ I ALWAYS want to go to work. I literally jump out of bed and get ready and go and when I am waiting for the lift in my office building think ‘gee, I am the luckiest person in the world to have this job.’ My motivation in Autism related things is also quite significant. I have made a daily meme for social media most days since 2014, I write at least one blog post a week and often some additional  articles, I have a radio show, I am writing three books at the moment – and possibly soon to be four – I do a lot of media activities, I facilitate a womens group and host a movie night, and this year I have already given a bunch of presentations and have more to go. I work full time as well. And that isn’t everything I do. For me a holiday involves giving presentations in an interesting city!

I think i have a handy combination of motivation, positive attitude and energy. Like everyone who is motivated, I have a basic ‘why’ – a driving passion which propels me to do all that I do. My current why stems from meeting a young Autistic man who lacked independence and resilience. I was horrified to see how his life was so limited, If this is what getting an early diagnosis meant, I thought, we need to rethink how that works.

Not many people know this, but before I met this your man I had not been very interested in Autism advocacy. I wrote my autobiography in 2005, under the mentorship of the magnificent Polly Samuel / Donna Williams. I was enthused when the book came out but over the next few years not much happened in terms and my work in the Autism community,  By the time I met the young man who spurred me into a need to change the world just a bit, I thought I would always be the author or a good but little known book about navigating a bunch of challenges as an undiagnosed Autistic woman. I had no great wish to be an advocate for an activist. Was was the point? I had a nice job and an apartment filled wiht art. I had overcome many of my demons. I was actually quite surprised at how enthused I became to  change things after meeting the young man.

Within months of my adopting my ‘why’ of advocacy things started to shift in terms of my work in the Autism community. I might even say that without that motivation, the kind of work I do would be impossible, We need our whys if we want to get things done!

Here are some thoughts on motivation and ‘Whys’:

  • Autistic passionate (‘special’ ) interests represent a pretty significant Why for most Autistic people. This is almost always a good thing
  • A why should not be viewed as an obsession. That denigrates it to something negative. It also makes the person whose Why it is feel bad about doing their great love and passion, which isn’t very helpful
  • I don’t think anyone can instil a ‘Why’ in another person except maybe be modelling it and the person becoming inspired
  • If young person is not interested or motivated to pursue a course or a job, they are unlikely to do well at it, or do it at all. So those students at the transition centre were told about my presentation by their teachers but if they had not been motivated to attend their level of concentration and engagement would have been completely different
  • Your Why is the point from which the motivation comes. It is less a case of ‘I want to make this thing happen which will be good because…’ and more ‘I absolutely LOVE this. In order to make it happen I will do this, that and those…’

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I’m dismissed! Where invalidation comes from and what to do about it

When I was about eleven I apprehensively went up to tell the teacher i was being bullied by some of the boys in my class: ‘Miss, the boys are chasing me and calling me names.” Miss thought for a fraction of a second and said ‘Just ignore it, And stay away from them’. ‘But they can find me!’ Miss went on to apparently more important things and I was all alone.

When I was 22, a skinny kid in hippie clothes with a faded streak of purple in my messy hair, I was in England with my parents. I was a visual artist at the time, and made the most incredible, soulful drawings. I went to a shop in the town where we were staying to buy some pastels and a can of spray fixative. I went up to pay for these things and the woman behind the counter looked at me and said ’Where did YOU get a fifty pound note?’ ‘The bank’ I said and left.

When I was 38 and a public servant, published author and home-owning middle classy sort of person I was in hospital. I apprehensively went up to tell the nurse the toilet in my room was running and I couldn’t use it. I told him four times over a period of three hours – by which time I was busting! Each time he dismissed my concern until finally coming into my room for a different reason and seeing the broken toilet. That example might seem a little incongruous  until I tell you it was a psychiatric hospital and I have a mental illness with apparently negates all the socially valued roles I have.

These three examples of essentially very poor behaviour relate to instances of my concerns – or my own self – being dismissed and my ‘me’ being invalidated. In each instance this was done by a person in a position of authority of sorts. Each represents a time I felt the power imbalance between myself and others in the world and felt ashamed and powerless.

The first example is probably a combination of the teacher / student dynamic and also discrimination about my ‘difference’ (there was no Asperger’s diagnosis in Australia in 1985). The second example is a class privilege sort of thing and maybe also some ageism and the final was clearly discrimination on the basis of mental illness. These invalidations go on all the time and for people from various backgrounds – Autistic people, disabled people and those with mental illness, people from certain ethnic groups and faiths, Aboriginal and Torres Strait Islander peoples and other First Nations peoples, some older people, some younger people, trans people, those who identity as Lesbian,Gay, Bisexual, Intersex, Asexual, and / or Queer, …there is a long list, but a dynamic of invalidation and discrimination exists for a lot of people.

Invalidation means treating someone as if they don’t matter, their opinions don’t count and they have no rights or say in their future. Invalidation has a number of effects on people. It can result in feelings of worthlessness, trauma, self-hate, self-destructive behaviour and things like suicidal thoughts and self injury,

I tend to think invalidation comes out of prejudice People doing it don’t see the person as deserving of respect or kindness. They really don’t matter in the eyes of the person doing the invalidating. There are different magnitudes of invalidation but it all starts from a perceived or actual power imbalance I think, a sort of dynamic privileging one person’s experience over another.

Is there a solution to this sort of thing? I hope there is. In fact there are a few ways to come at this. One approach basically entails addressing power imbalances between people and promoting respect and understanding of people from all different groups in society. This is a very large task! There are subsets of this approach happening all over the place though. My writing this blog post is a very small action to address these issues. I’m pretty certain it won’t single-handedly fix the issue of discrimination and invalidation but it will join a bunch of other writings and talks about addressing these issues. Another way to address it is to implement measures to change the culture  in institutions which are known to invalidate those under their care. This is actually quite a good way of addressing it but once again, would involve a lot of effort to get to staff members in every psychiatric ward etc. My favourite way of addressing invalidation is actually a lot less resource-intensive off the previous options. This one is also potentially highly effective. Here’s how it works:

Just in terms of Autism, think of every autistic adult, and child, every parent, partner and supporter  for those people, every ally and coworker who values their Autistic colleague. That is quite a lot of people, and probably cuts across other demographic groups as well. What if all those people were empowered to see invalidation and say ‘No! We will not have this!’ Every time invalidation was an issue those people would speak up and support one another to speak up. This is a big part of what advocacy is for. It is often hard to speak up for yourself so those in our community supporting one another  can address this invalidation is about making people feel alone and isolated, like they don’t matter. But we do matter. Clearly demonstrating our worth through advocacy so that at each moment of invalidation someone speaks up and asserts their value would turn invalidation on its head. And one person speaking up will be seen by others, hopefully empowering them to do so too.. The empowerment through advocacy can flow to other parts of life. And you know what? This is already happening. We are starting this journey together.

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A passion for passion – why Autistic interests are important

This is a post about passions and motivation for Autistic people and why our passions are so important to us.

When I was thirty I wrote a book. Writing the book was actually one of the best ways in which I could address my challenging past. My motivation to write that book was immense. I was driven to write it because it was a catharsis, a means of putting the awful things form my earlier life into a useful format and exorcise those demons. Drafting the book took four weeks and editing it took two. It almost took the publisher longer to send me a ‘we are sending you a contract now Ms Author’ email than the book had taken to write!

After I wrote the book my motivation turned to other things – getting a professional job among them. While I was strongly motivated to do these things, they were not a passionate interest.

For a few years after i wrote my book I had no clear motivation. I was a poor sad person  without an interest or driving passion. I had some vague notion that my book wold be discovered and I would have a bigger audience, that I would be asked to speak at conferences and things. My mentor writing my autobiography was author and all ‘round legend Donna Williams. Emulating her professional life seemed like a nice thing to do. Donna was always getting emails form overseas and being asked to do things. ‘That’s really nice’ I thought but it was not a passion. You cannot manufacture a passion – it is either there or it isn’t.

In 2012 I met a young Autistic man who was so lacking in independence it horrified me. Anyone who has seen one of my resilience or employment presentations would know this young man. I call him’Adam’ publicly. When I told Adam that I worked for the public service, had written a book and was autistic he told me flatly that I was a liar. Apparently my life was impossible for an Autistic person. I realised that the Autism diagnosis – which  i had always though led to positive things for those diagnosed – in fact could lead to an unintended consequence of Autistic people lacking confidence and feeling unable to join the world in the best way for them.

Adam and his situation stirred in me that dormant passion. I didn’t care whether I was well-known, wrote books or anything else but I was going to make it my mission to support Autistic young people to aim for their potential and hopefully reach it, whatever it may involve. Within weeks of meeting Adam I had starting drafting what would become my second book, The Wonderful World of Work. This book is aimed at teens on the Autism spectrum to build their understanding and confidence around employment/ It emphatically places the idea in the world that Autistic people can and do work and with the right supports and understanding from employers and colleagues the workplace can be a positive place for us. That book was also completed in a short space of time and accepted almost without amendment. It was at around the time I wrote this book that I noticed a change in how my work was perceived within and out of the Autism community. I was approached to audition for a TEDx talk in 2013, invited to all sorts of conferences and events.

After six years of being a little-known Autistic author, the direction of my work changed. I went from having some vague notion of sharing my message on autism without really understanding what that meant to being filled with a fire, a drive to actually change the world in whatever small way I could.

After a few years my passion is as strong as ever. My love is my advocacy work and writing. People ask me how I do all the work I do. I always answer ‘because it isn’t work.’ I like to imagine an Autistic child who loves My Little Pony (or whatever) in relation to my passion.  Picture that child and their love for MLP, their encyclopaedic knowledge of that world. Then transfer ‘My Little Pony’ for ‘Autism advocacy’ and ‘child’ to ‘Jeanette’.

I suppose that brings me to crux of this post. Autistic children’s passions are often called obsessions and seen as a distraction at best or an annoying waste of time. Their obsession with a topic is often greeted with adults telling them to stop talking about their interest. Sometimes kids are kept from their interest. Calling something  an ‘obsession’ sort of sets up a semantic issue where that thing is devalued from the outset. Last year I was named ACT Volunteer of the Year all because of my ‘obsession.’ People tell me all the time that my work has helped them or their kids. But why does my interest get to be valued and respected when it is as much an ‘obsession’ as the more esoteric interests of children and adults? My passion was fed by my passions as a child. In my early life I had some interesting passions – cats, fungi, space exploration, Dr Who, the Cold War and Trotskyism. Wen I was a child and teen I was often told to stop focussing on my interest. So let’s have a quick look at the jobs my ‘obsessions’ might have led to had I kept them up:

  • Botanist / mycologist
  • Author
  • Actor
  • Veterinary surgeon or veterinary nurse
  • Astronomer
  • Physicist
  • Historian
  • Academic in one of a number of fields

For Autistic children – and adults – their passion is a key part of their enjoyment of life. Taking away their interest actually may mean taking from them the one pleasurable they have in a hostile and unpredictable world. Certainly if interests relate to dangerous activities this requires attention but most of our interests are harming no-one and helping us to enjoy our world.

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Me getting a standing ovation for obsessing and talking about my special interest for a whole hour! 🙂

How Whimsy Manor got its name (or how a cat changed my life)

My apartment is called Whimsy Manor and is filled with art and pretty things, silk flowers, books by friends and by me (and many other books), photos of friends and family, a fair number of awards and the usual stuff you find in houses – furniture, a TV and a laptop. I have owned my home since 2009 but it did not get a name until 2013. Here is the story of Whimsy Manor and it’s most lovely – and naughty – inhabitant who is a person of the black cat persuasion and a very close friend and ally against those demons my brain tends to create.

Whimsy Manor started out as a compromise. I bought it because my housemate at the time was a controlling bully and I had no assertiveness at all. I thought that she would think me buying my own place was not a personal slight against as moving to another rental would have been. My budget meant I needed to buy the cheapest apartment I could in Canberra and near a bus route. The apartment I picked had been built the month I was born. The flats were initially built as public housing for low income people but had been sold to private owners in the 1980s. The walls were sturdy concrete and probably built to withstand the end of the world but it soon became apparent the plumbing was less so. I had a number of expensive and stressful plumbing issues, the worst of which being the need to replace the leaking shower.

My anxiety about the maintenance, trustworthiness of tradies – or not – and expenses took over my life. I thought my walls would collapse while I was asleep. As can happen for me, all this stress turned into psychosis. I had a very unpleasant few years.

Now, to the bit about the cat. I am a cat lady. I was a cat lady when I was five years old. Like many Autistic people I have an affinity with animals which surpasses almost anything else. I know cats and up until moving to Canberra I have always had a cat. The controlling former housemate had two cats and they were the most unpleasant felines I have ever met. If they were children at the time I was growing up, they would have been described a ’spoilt’. These unpleasant cats and my association of them with their unpleasant human owner did something  I would never have thought possible in that it put me off having a cat!

When I was unwell and worrying about the structural integrity of my house along with my mental health, several friends suggested quite strongly I would be better off with a cat but I just responded with a list of reasons it wouldn’t be a good idea. I thought that if I couldn’t look after myself, how could I care for a cat? All this changed one day I was off work. I went up to put out the garbage and as I was about to enter my house I saw a little tabby cat sitting on the wall. I gave him a scratch behind he ears and he purred. It was lovely. When I got inside I realised that when I was patting the cat I did not feel unwell. Actually I had felt quite good. ‘I need a cat.’ I thought – and what a wonderful realisation that was! I was very fortunate that I had a friend at the time who was the local cat rescue person. I called her and said ’I need a cat!’ She came the next day with four cat carriers. The first three were full of very cute kittens, filled with mischief and curiosity. They were lovely but I didn’t want one of them. The last carrier had an adult cat, a big black one who my friend said didn’t get along with the other cats. The cat, who had been given a generic black cat name like Shadow or something, let out a sad yowl. In response I did something which anyone who knows cats knows you shouldn’t do: I picked up the grouchy cat and held him to me. He just snuggled in and started purring. He has been purring – on and off – ever since. At that moment he became Mr Kitty. In that moment my life actually changed.

My friend took all her kittens home – including the two feral ones which has got stuck under the washing machine and needed rescuing apparently for a second time! The black cat stayed wiht me. I loved him from the moment we connected and I always have,

Mr Kitty was the most challenging cat I ever had. He destroyed furniture and carpet and his way of asking for anything – food, attention etc – was to bite my feet! But this was just how he was. I think both of us knew that we belonged to one another and that would never leave him or given him up. He had been a stray for some time before I got him and his anxiety around food broke my heart. I would leave a bowl full of cat biscuits for him but when I got home from work he wouldn’t have touched them. As soon as I got in he would finish the food. I think he was worried I wouldn’t come home and he would need to ration the food.  He doesn’t do that anymore. In fact he is one of the happiest cats I know. I often find him in the hallway just sitting there and purring for no apparent reason.

My mum does not share that strong bond with animals I have. She is allergic to cats but even she knows he is very important to me. She says he is a gift from God (which always makes me smile as I imagine God dispensing kitties for people who need them).

The biggest difference Mr Kitty has made is in my attitude about my home. A few months after I got him I started thinking of my home as a positive thing, In the past I had wished I could live at my workplace after hours but then I started looking forward to the little furry person waiting for me at home with cuddles and purrs. My house became known as Whimsy Manor and I started on my work to make it a home with as much character as a small apartment could have. People now come to Whimsy Manor and many say it is a very warm and positive place. Some of my friends tell me how Mr Kitty is like another friend, not just my cat. To me he is certainly much more than ‘just’ a pet. He really did change my life. I always say that I rescued Mr KItty and he rescued me. (And he is nibbling my left foot so I’d better give him some biscuits….)

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This b;go was recently named one of there top Autism resources on the Internet by the Art of Autism. Cool! 🙂

How Whimsy Manor got its name (or how a cat changed my world)

My apartment is called Whimsy Manor and is filled with art and pretty things, silk flowers, books by friends and by me (and many other books), photos of friends and family, a fair number of awards and the usual stuff you find in houses – furniture, a TV and a laptop. I have owned my home since 2009 but it did not get a name until 2013. Here is the story of Whimsy Manor and it’s most lovely – and naughty – inhabitant who is a person of the black cat persuasion and a very close friend and ally against those demons my brain tends to create.

Whimsy Manor started out as a compromise. I bought it because my housemate at the time was a controlling bully and I had no assertiveness at all. I thought that she would think me buying my own place was not a personal slight against as moving to another rental would have been. My budget meant I needed to buy the cheapest apartment I could in Canberra and near a bus route. The apartment I picked had been built the month I was born. The flats were initially built as public housing for low income people but had been sold to private owners in the 1980s. The walls were sturdy concrete and probably built to withstand the end of the world but it soon became apparent the plumbing was less so. I had a number of expensive and stressful plumbing issues, the worst of which being the need to replace the leaking shower.

My anxiety about the maintenance, trustworthiness of tradies – or not – and expenses took over my life. I thought my walls would collapse while I was asleep. As can happen for me, all this stress turned into psychosis. I had a very unpleasant few years.

Now, to the bit about the cat. I am a cat lady. I was a cat lady when I was five years old. Like many Autistic people I have an affinity with animals which surpasses almost anything else. I know cats and up until moving to Canberra I have always had a cat. The controlling former housemate had two cats and they were the most unpleasant felines I have ever met. If they were children at the time I was growing up, they would have been described a ’spoilt’. These unpleasant cats and my association of them with their unpleasant human owner did something  I would never have thought possible in that it put me off having a cat!

When I was unwell and worrying about the structural integrity of my house along with my mental health, several friends suggested quite strongly I would be better off with a cat but I just responded with a list of reasons it wouldn’t be a good idea. I thought that if I couldn’t look after myself, how could I care for a cat? All this changed one day I was off work. I went up to put out the garbage and as I was about to enter my house I saw a little tabby cat sitting on the wall. I gave him a scratch behind he ears and he purred. It was lovely. When I got inside I realised that when I was patting the cat I did not feel unwell. Actually I had felt quite good. ‘I need a cat.’ I thought – and what a wonderful realisation that was! I was very fortunate that I had a friend at the time who was the local cat rescue person. I called her and said ’I need a cat!’ She came the next day with four cat carriers. The first three were full of very cute kittens, filled with mischief and curiosity. They were lovely but I didn’t want one of them. The last carrier had an adult cat, a big black one who my friend said didn’t get along with the other cats. The cat, who had been given a generic black cat name like Shadow or something, let out a sad yowl. In response I did something which anyone who knows cats knows you shouldn’t do: I picked up the grouchy cat and held him to me. He just snuggled in and started purring. He has been purring – on and off – ever since. At that moment he became Mr Kitty. In that moment my life actually changed.

My friend took all her kittens home – including the two feral ones which has got stuck under the washing machine and needed rescuing apparently for a second time! The black cat stayed wiht me. I loved him from the moment we connected and I always have,

Mr Kitty was the most challenging cat I ever had. He destroyed furniture and carpet and his way of asking for anything – food, attention etc – was to bite my feet! But this was just how he was. I think both of us knew that we belonged to one another and that would never leave him or given him up. He had been a stray for some time before I got him and his anxiety around food broke my heart. I would leave a bowl full of cat biscuits for him but when I got home from work he wouldn’t have touched them. As soon as I got in he would finish the food. I think he was worried I wouldn’t come home and he would need to ration the food.  He doesn’t do that anymore. In fact he is one of the happiest cats I know. I often find him in the hallway just sitting there and purring for no apparent reason.

My mum does not share that strong bond with animals I have. She is allergic to cats but even she knows he is very important to me. She says he is a gift from God (which always makes me smile as I imagine God dispensing kitties for people who need them).

The biggest difference Mr Kitty has made is in my attitude about my home. A few months after I got him I started thinking of my home as a positive thing, In the past I had wished I could live at my workplace after hours but then I started looking forward to the little furry person waiting for me at home with cuddles and purrs. My house became known as Whimsy Manor and I started on my work to make it a home with as much character as a small apartment could have. People now come to Whimsy Manor and many say it is a very warm and positive place. Some of my friends tell me how Mr Kitty is like another friend, not just my cat. To me he is certainly much more than ‘just’ a pet. He really did change my life. I always say that I rescued Mr KItty and he rescued me. (And he is nibbling my left foot so I’d better give him some biscuits….)

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This blog was recently named one of the top Autism resources on the Internet by The Art of Autism. The author is very happy about this although Mr kitty isn’t all that fussed 🙂

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Why we need to say goodbye to functioning labels

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

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

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

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

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

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

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