An Autistic self-advocate addresses nine misconceptions about Autism

In this post I address nine misconceptions around Autism as best I can in a short space.

“You don;t seem very Autistic to me. My nephew is Autistic and he can’t even get the bus.You go to work….”

While Autistic people often share a number of general characteristics, we are all individuals. Two Autistic people can be vastly different from one another. Autism is not a determinant of character or what path through life we may take. It is a different neurology, or a different way the brain is ‘wired’ to non-autistic people’s. Suggesting that someone is ‘not Autistic enough’ is highly insulting. Autistic people may have significant challenges which they manage well wiht strategies or they may keep their struggles hidden. Unless you are that person or live closely with them, you can’t really assess what their Autism means for them. And I really don’t enjoy having to justify ‘how Autistic I am’ to somebody I barely know!

“Are you high functioning?” 

Levels of ‘high’ or ‘low’ functioning Autism can be fraught and very unhelpful. The functioning label is often seen as a life-long thing. However this can be inaccurate and misleading. An Autistic someone who works full-time might have a meltdown. So while they are working their functioning is doing one thing but during the meltdown their level of functioning is different. A functioning label fails to describe the frequent changes in ability to cope that can occur in an Autistic person’s life.

People described as ‘low functioning’ are often non-verbal. The low functioning label is often used as a shorthand for intellectual disability but that is a separate condition from Autism and nonverbal people often do not have any intellectual disability. In fact many nonverbal Autistic people are highly intelligent. The functioning label can also become something of a self-fulfilling prophecy for Autistic young people with the ‘low functioning’ ones being given negative messaging  and low expectations fir their life and their ‘high functioning’ peers often having unrealistically high expectations put on them and their issues ignored because they come across as articulate. I try not to use functioning labels around Autism at all.

“Are all Autistic people geniuses / computer ‘nerds’  / like Sheldon Cooper in The Big Bang Theory? 

Many Autistic people respond well to technology. Some of us are certainly highly proficient at IT-related tasks. However Autism covers the full range of cognitive and intellectual abilities, learning styles and interests. Some people on the Autism spectrum are excellent at art and writing, some are good at maths and some others are great at sports. We are all different.

To assume all of us are highly intelligent is often quite unhelpful. Intellect is not much of a measure of someone’s value and for people on the autism spectrum who are not highly proficient with intellectual or technical tasks, assuming we are all computer geniuses can be exclusionary and can cause feelings of inadequacy.

“Autistic people don’t have relationships or sex”

Many Autistic people are sexual beings in the same way that anyone else is a sexual being. They have relationships, marriages, casual sex and all other sorts of sexual interactions. A lot of Autistic people identify as being queer or gender diverse. While some Autistic people identify as asexual this is not the reality for everyone on the spectrum. Just because Autistic people might not fit the stereotype of who should be having sex and relationships, it doesn’t mean we don’t  – or for that matter, that we shouldn’t – do it.

“Autistic people shouldn’t have children” 

As with many other disabilities, there is a lot of prejudice around Autistic people raising children. On a personal level I will say that my mum is diagnosed on the Autism spectrum, like me, and she has always been the perfect parent for me. Moving past my own experience and there are a good many Autistic parents in the world. Some evidence suggests that Autistic parents can be a better fit as parents of an Autistic child as they understand their child better than a non-autistic parent would. Autistic parents tend to do some things worse than typical parents and other things better. Autism certain doesn’t preclude someone from parenting or from being a good parent.

 “Non-verbal Autistic people have an intellectual disability”

While it is sometimes the case that Autistic people who do not use speech / are nonverbal have a co-existing intellectual disability this is not always the case. Many non-verbal Autistic people are highly intelligent. Many use a communication device to express their thoughts. This TEDx Melbourne talk by Tim Chan who is a nonverbal Autistic man will give you some idea of the issues around non-speech communication and Autism. https://www.youtube.com/watch?v=Woy-XzC-UVs&index=2&list=PLzX8PtR8aW8FCl_QxXV-yy35UOkbWI5fe

“Autistic people can’t work”

It is true that some Autistic people cannot work at all but many of us have jobs in the full range of industries. It can be difficult for us to find and keep a job and Autistic people are certainly overrepresented in unemployment and welfare statistics. It is likely that a lot of the difficulties surrounding work for Autistic people involve a lack of willingness for employers to take them on rather than the Autistic job seeker’s lack of skill or willingness to work. A lot of Autistic people do work and can be highly skilled employees. We often bring some great soft skills to the workplace, like honesty, enthusiasm, attention to detail and a work ethic. It would be great to see more employed autistic people t this is an area for ongoing attention.

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“Autistic people are rude”

Autistic people usually interpret the world and communicate differently to non-autistic people. We generally want to be liked and our intention is to be respectful of others. The issue that can happen is one of a different culture of social communication between Autistic and non-autistic people. ‘Typical’ people communicate using a number of means: things like eye contact, body language, facial expression, tone of voice and the words actually spoken. There are a number of unwritten social rules which govern the communication of non-autistic people.

For those of us on the Autism spectrum we usually communicate using the words spoken. We tend to be quite honest and ‘straight up’ in the way we talk. It is hardly surprising that we make social ‘errors’ but these are almost always unintentional. I find it is terrible to know that I have made a social ‘mistake’ and people are upset with me as I never want to upset people. If more people understood about he differences in communication between Autistic and non-autistic people they would understand that our apparent rudeness is often just a misunderstanding of different communication styles.

“An autistic child is a lost child, a tragedy’.

This is the most hurtful thing you can say to me as an Autistic woman. I had a very difficult childhood and early adulthood. My parents never said they regretted having me. They loved me and I became a much happier and more fulfilled person as I grew older. It is not a tragedy to bring a human being into the world. If parents think that, consider the messaging their Autistic child will receive in his or her formative years? I understand that parents of newly-diagnosed children can struggle considerably but they need to be supported with appropriate services and professionals, not told their child is ‘a tragedy’. Some groups prey of the vulnerability of parents pf newly diagnosed kids and sell them dangerous and abusive ‘cures’ like bleach enemas. This is absolutely Not OK. Ever!

Final thoughts

I value and respect myself as an Autistic woman. My journey has been and still is hard at times. I live in a world which often victimises and ostracises ‘difference’ but I love who I have become. I wish I had answers to all these misconceptions when I was younger. We do have a long road ahead of us but we are strong, creative, sensitive and powerful people.  Let’s do this thing. Let’s change the world!

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Mr Kitty’s blog

Hello,

I don’t write much – I leave that up to my human mum. Some of you might know me though, My name is Mr Hieronymus Bosch Kitty Purkis II, but that’s a silly name so just call me Mr Kitty.

I remember a very long time ago I didn’t have a home. It was cold and I had to hunt for rats and mice to eat. I was very scared. Sometimes other cats and dogs would try and attack me, so I got to be very tough and I still don’t like other cats and dogs.

One day I got caught in a cage. I thought this was terrible and I cried and cried. Where would  get my food from? But a human came and took me out of the cage She patted me and told me it would be OK. I didn’t really believe her. I had never been patted before ad thought it was lovely. The human spoke in a  kindly one of voice and told me what a pretty cat I was.

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Not long after that I got taken to somewhere new. I was scared. But it was actually wonderful because a lady took me out of the cage and help me close, I knew she was a good person and I purred and purred. I heard her say ‘I’m keeping this one because he is so beautiful and I love him.’ And there I was at home with my human mummy forever. Every day my human mummy tells me again ‘Mr Kitty you are beautiful and I love you.’

My mummy spends a lot of time sitting at the desk working on her computer. I get impatient and want cuddles and bite her toes (but not very hard). She says ‘Don’t be annoying. I love you but you are being annoying.’ Then she always cuddles me and gives me some food.

Most mornings my mummy goes out, She says ‘I’m off to work Mr Kitty. See you later, be good.’ I go and sleep on the bed until she comes home. Sometimes I look out the window at the world. I don’t want to go out there – it is scary and cold – but I like to look. I used to think that my human mummy wouldn’t come home. If there was food in my bowl I would leave it, not knowing if she would ever return. But I don’t do that any more because she always come hime and I know she wouldn’t leave me.

She buys toys for herself. I know she likes sparkly things and glitter. She has a whole box of human toys but I help her to share them with me. She says ‘you’re a funny bugger’ and picks me up and gives me a big cuddle. I love that.

Every once in a while a bunch of other humans come to my house. They all talk and laugh. One of them is a young human with long hair. She is very good at art and shows mummy and the other humans her drawings. There is another lady who plays with me. I like her. She is fun. I usually visit all the humans’ handbags and smooch them. The people stay really late and I always go to sleep before they leave. I think this is called movie night.

My human mummy gets really sad and scared sometimes. She tells herself ‘it’s not real’ and doesn’t even sit at her computer. I go up and give her a big cuddle. She holds me really close and tells me she loves me. I love her too and I hate when she is scared. She always gets better but I worry about her. One time she said ‘your face looks like a demon but I know you are an angel.’ She needs me I think.

At the end of every day my human mummy climbs into the big bed. I always hop on there as well. I climb under the covers right next to her and lay my head on the pillow. Mummy puts her arm over me and holds my paw. When I wake up later she is still holding my paw.

I love my human mummy. I am so happy at home with her. I have lots of toys to play with and yummy cat food. I say thank you every day with cuddles and purrs. I have almost forgotten when I didn’t have a house or a human.

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We are family

As an Autism advocate I spend a lot of my time talking to Autistic kids and teens and their parents. I am not a parent myself (unless you count my furry child who says meow) but I do find myself thinning and talking about parenting a lot. While I am always a little cautious to give advice, given I have not raised any (non-cat) children before, I do tend to find parents of Autistic kids are often keen to hear my perspective as an Autistic adult who has a very good memory of what life was like as an Autistic child.

When I started out on my advocacy journey in 2005, I met a few parents whose lack of empathy and understanding for the Autistic child left me amazed and saddened. One example of this was when a woman came up to me with her daughter after a talk I gave. The mum introduced me to the daughter and said she was nineteen. The young woman was evidently quite shy. The mum said loudly ‘my daughter doesn’t have any friends. Why doesn’t my daughter have any friends?’  While I could think of one fairly obvious answer to this question, I just mumbled some response about Autistic social groups.This sort of experience seemed to be more common back then. Autism was often seen as nothing other than a big, sad deficit if and if you had an Autistic child it was a tragedy and you deserved sympathy from everyone. I think it was based in the school of thought that it was OK to say rude, dismissive or downright ableist things too Autistic people because they weren’t properly  human anyway. I’m not saying most parents thought this way, in fact it was probably only a small minority, but those were the attitudes I sometimes found myself coming up against as an Autistic speaker.I was quite anxious when I gave a talk that somebody would have those attitudes as that sort of talk always made me feel angry and sad – not good attributes when speaking to an audience.

Flash forward eleven years to now and things are quite different. While some groups and individuals still describe Autism as a tragedy and Autistic children as being somehow  ‘lost’, most of the families I meet and speak with do not share that view in any way. Often parents of newly-diagnosed Autistic kids go through a very challenging time, worrying what will become of their little person, but I find most parents I meet are more supportive than sad and love their kids as much as a person can love another person.

The other day I visited a family who I have known for a while but whose house I hadn’t ever visited before. The dad works in the private sector and the mum looks after their two kids and does advocacy work. I had met their oldest boy but not the younger one. I was ostensibly vsitiing their kittens – I invited myself over on the premise that I wanted to meet the cats but I wanted to meet the humans too. The older son is an outgoing, enthusiastic lad. He shook my hand a couple of times and told me about things he was interested in – cars mostly. The mum described the younger boy thus: ‘He doesn’t speak like other people do.’  And he didn’t say a lot of words but he was also energetic and engaged and seemed happy. The mum told me the younger boy – who is seven – doesn’t really want affection from anyone other than family, but after not too long he came up and requested a hug from me and sat down and played with my bracelet. I felt so full of love and acceptance from the family, The little man and I sat there in silence with him playing with my bracelet. There was no need for words, we were connecting as two Autistic human beings. I was reminded of a description in Steve Silberman’s wonderful book Neurotribes about an Autism event called Autreat where people were just themselves with no need for pretence or small talk. I reflected on just how very privileged I am to be an Autistic woman at this point in time where we are becoming recognised and respected after countless years of horrific discrimination and mistreatment.

Autism can be hard for a child and their family. While I do not in any way condone the concept that Autism is a tragedy and needs ‘fixing’, I do understand that parents of Autistic kids – particularly newly diagnosed kids – can face challenges and difficulties. Not all of these are because of Autism itself but they are still challenges.   So when I talk to parents and see how much they value their child’s neurodiversity and their own unique personhood I am a happy Jeanette. Of course this should always have been the case, but it hasn’t been. So thank you to parents and family members for your support and love. Autistic kids grow to be Autistic adults and receiving love, support and respect from your family right from the start is a very important way of putting that child on the path to reaching their potential whatever it may be.

PS The kittens were very cuddly

 

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Mr brain doesn’t work – it’s a work in progress

I am sitting in the living room at Whimsy Manor with Spotify’s Romantic composers playlist playing. My Kitty is curled up in a black furry ball of catness. I am wearing a brightly coloured Missoni dressing gown, my ‘Infinitely Awesome’ T-shirt, with earrings with a picture of blue starry space on them and to top it off, a blue wig. I just spoke to my mum for a while. Before that I had a lengthy conversation with a nice man from the Canberra mental health crisis team. It would seem that I am a little bit more ‘mad’ than usual. A combination of my cyclical manifestation of my mixture of symptoms which has been given many names – with the latest being ‘atypical schizophrenia – and a lot of stress form one of my many activities. I have been struggling for the last few weeks although I only sought help recently as I find it hard to be aware of things like my mood and mental state. It usually gets to the point that it threatens to result in some terrible decision or act on my part and then I realise things are a bit wrong and seek help.

The odd thing about being unwell is that the me that I know and the me the rest of the world knows are two different people. I can do the social chameleon thing very well so can hide a lot of pain and distress behind a smile and a joke.

This is what I imagine people think when they see me:

  • Author
  • Responsible person
  • Role model
  • Kind soul
  • Public servant
  • ACT Volunteer of the Year
  • All round positive person.

My inner world is a little different. I am afraid of what I might do or say. I get transported back twenty years ago when my illness contributed to violence and self-destruction. All those  accomplishments that people see are not present in my mind. I look at my awards and books and wonder who they were awarded to and who wrote them. It definitely wasn’t this stressed, miserable, confused person. Evenings are filled with the hell of supernatural experiences. Things are cursed, numbers are more meaningful then they should be (‘It;’s 16-6-16. 666. You need to die today’.and similarly unhelpful things). I hide under the covers at night, terrified the ghosts will come and haunt me. I try to contradict these messages with reason and science but fail miserably.

So, there’s the bad bits. The life I have lived for many years. All those risk factors for suicide, violence, institutionalisation, unemployment, homelessness. That is what I have. Thankfully I have a few other things.

Yesterday I posted that my brain was misbehaving on Facebook. It wasn’t one of those posts that can seem manipulative (well, I hope it wasn’t!). I stated that I was struggling. So many people in different parts of the world responded with support and concern. I went to work today and took pleasure in the structure and routine. I was fine until I walked out of the building. That means I have 8 hours’ relief from the symptoms simply because I was using my employment as a very handy distraction. I also got a lot of work done.

I have been using mindfulness quite consciously too. I don’t find the mindfulness meditation works very well for me but what I am trying to do is to incorporate mindfulness into my attitude and experience of life. In the past I would have  felt very unwell and that would lead to a while load of anxiety about the future. At the moment I am not worrying and obsessing about the future. With mental illness episodes, I find it more helpful to experience whatever I do in the moment and manage the illness moment to moment. If I need to address something, I should address it but worrying about ‘oh no, I’m going to hospital’ is unhelpful (unless you are on the way to hospital I suppose!)

I also have some wonderful protective factors keeping my in state where I can cope. One of these is that lovely book that I co-wrote with Emma Goodall and Jane Nugent all about mental health and Autism. There is not much in my experience which silences a self-destructive thought quite like ‘Thats a pretty bad legacy to leave as an author of a practical and supportive book on metal health.’

Mr Kitty is an excellent protective factor, both in a support sense and logistical one. Mr Kitty is a rather singular cat and none of my friends who have offered to look after him when I am away ever volunteered to do it again! He loves me more than anything and has never been outside since I have had him so when separated form me he will fret. If you have him in your house that involves a lot of very loud meowing and poor behaviour. This is fine, and I love the little fella and don’t mind paying $45 per night for him to stay in the biggest suite available at the RSPCA boarding (he spends most of his time in the cage because he doesn’t get along with the other cats and I don’t begrudge the extra expense). However if I go to hospital, I may not be able to board him at short notice. This is a great logistical protective factor because I simply can’t entertain the notion of my going away unexpectedly so it is not an option in my mind.

Also, hospital and I are not good friends. I now know it is very detrimental to my health to be in those places. Firstly I am an empath. This means that if you put me in a setting where people are very sad, very angry, and/or very confused, not only do I have my own illness to contend with, I have everyone else’s too! Also I am a very independent person. I am also quite a well-respected person. These are things I quite like to maintain but in psychiatric hospital there is a lot of disempowerment and sadly often disrespect going on too.

So I think the Jeanette will win this time and the illness won’t. I remind myself when life is terrifying and overwhelming that crises don’t last forever and I shall probably feel better . Even when I doubt myself and worry about the future I remind myself I have been here – and in worse places than now – and have managed to recover and do well.

Mental illness is a great big nasty bastard of a thing, but it can be manageable.I learn more about this every day (and being me I do enjoy sharing things which I have found helpful.) This battle is a battle I will fight again but there are periods of peace before and after struggle. For now I will cuddle Mr Kitty, make cup of tea and enjoy the fact that my ‘hair’ is blue. Tomorrow is a new day.

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Protective factor of blue hair (works for me!)

 

 

 

 

 

My executive functioning isn’t functioning!

Today I wrote this on Facebook: I am probably the least practical person I know. My executive functioning is horrible. I get lost in my own suburb, turn up late for stuff, forget important details about everyone and everything in my life. I fail to understand how there can be a ‘proper’ place for things. Who writes that rule? A carpark to me is basically a big space full of random cars in meaningless order which makes no sense whatsoever. I understand that this can be irritating for others – it irritates me! However, I prefer to think of myself as a Masters graduate who has written three published books, given a TEDx talk and who won ACT Volunteer of the Year. Plus the executive functioning stuff I actually can’t help – I’m not doing it to piss people off. So please be friendly and see past the person trying to unlock the front door of Whimsy Manor with her work pass and change the TV station with her phone. 

The post was partially humorous but not entirely. Like many others on the Autism spectrum I struggle with this thing called ‘executive functioning.’ The first reasonably reputable website I went to for a neat description described executive function as ‘….basically the management system of the brain. These mental functions work together to help us organise and manage the many tasks in our daily life. Impairments in our executive functions, which are thought to involve the frontal lobes of the brain, can have a major impact on our ability to perform such tasks as planning, prioritising, organising, paying attention to and remembering details, and controlling our emotional reactions.’

That definition is mostly true for me. The only birthdays I can remember are those of my immediate family and even then I need to write them down. I see people at work and comment that I hadn’t seen them in a while and they respond with some surprise that they were overseas for six months and I was at their going away party!

When I travel I can’t hold the times and days for flights and things n my head and frequently check my itinerary and hotel bookings so I don’t forget to go to some important event for which my presence is an integral part. Bus timetables baffle me, changes in time zones across countries are so confusing my head actually hurts with concentration when I try to find out what time my radio show guest  in San Francisco needs me to call them.

While these things can be challenging for me, I often find the most difficult part is when people can’t understand why someone who is apparently intelligent but doesn’t know whether to turn the clock backwards or forwards for daylight savings and, when i do, how that will affect the time in another state relative to where I am. People can be quite rude about this deficit. They think I’m ‘vague’ or stupid. It isn’t either of those things, I am not at all vague – my brain is always completely alert and thinking about things, usually quite insightfully. However I have learned to say I am vague as people seem to understand the concept of ditzy rather than the concept of Autistic for some reason.

Some people seem to find my difficulties with practical tasks baffling – here is somebody who wrote an autobiography in four weeks! I find writing, public speaking, making art, hosting my radio show, my paid job in government administration and all the mentoring and facilitation I do completely effortless but I can’t work out daylight savings time! Other people get annoyed by me. Maybe they think I am being deliberately helpless or something. Maybe they just get annoyed that I can’t do things their neurotypical seven year old would find easy and I’m a grown woman. Maybe they think I am looking for sympathy. They snap at me ad glare at me and look all impatient and cranky. This makes things worse because then I get stressed and upset with myself for being unable to do these things.

I wish people would ask rather than assume and then I could tell them about the difficulties I am having, why it isn’t deliberate and is just part of what makes me who I am.

Strangely enough I have managed to overcome some of my executive functioning issues over the years, Anyone who has worked with me or booked me as a speaker or been an editor for one of my books will tell you how organised I am. I am actually not naturally organised at all. I have learned a number of useful strategies to help me get things done and done by the deadline. I have a bunch of spreadsheets which I make sure I update with each new task and keep updated every day. I also make sure if someone asks me a quick question or wants me to do something small, I do it straight away. This is because smaller things slip out of my brain and get left behind. People always comment on how organised and responsive I am but it isn’t so much me as the helpful strategies I use.

If you are dealing with executive functioning difficulties and need to address them to perform work or other tasks, you can make your own strategies which work for you. If you have supportive partner, family member or good friend you can enlist them to assist you as well. Working out a ‘system’ around scheduling activities (or whatever you ant to improve at) which you find intuitive and sensible can be really useful too. And never listen to people who put you down and criticise you for your executive functioning issues. If someone had vision impairment and used a cane, people wouldn’t think to criticise them because they couldn’t  see.  Having executive functioning issues is sort of like being vision impaired – you can’t help it, it is challenging for you and can require some assistive strategies to enable you to live the life you want to..

IMG_1285 “How did I get in here??”

Strategies, plans and doing what works

Regular readers of this blog probably know I have some mental health challenges. These issues have shaped my life in many ways – some good, many bad. My mental illness symptoms vary but can be quite severe. I experience a number of issues – psychosis, depression, elevated mood and anxiety are the main ones. A lot of my thinking goes into working out how to manage my illness.

Recently I co-wrote  a book on Autism and mental health – The Guide to Good Mental Heath on the Autism Spectrum I suppose now I am an ‘expert’. Actually all people with mental illness are experts on mental illness to varying degrees. I just got back from Melbourne where I went to deliver a presentation at a conference. I was the keynote speaker so  was quite keen to attend! The conference was on Friday. I have been under a lot of stress lately for various reasons and on Tuesday – three days before the conference – I needed to go home early from work as I was really depressed and not helping anyone very much. I thought I would return to work on Wednesday but I felt awful so stayed home then as well.  I was faced with the very real possibility that I would need to cancel a speaking appearance due to my stupid mental illness.

At this point I did something which I will need to save and use again in the future because it was good. I said to myself ‘I don’t know how I will feel tomorrow or Friday or even in an hour’s time. I will do as many helpful and positive things as  can to improve my mental health. If it is effective I will be able to give my talk. If not, I will have to cancel the conference talk.’. Basically I practiced mindfulness. On Thursday morning I awoke feeling well enough to fly to Melbourne. I got to my hotel in the outer suburbs of Melbourne and felt quite isolated. I started to dwell on these feelings but thankfully at this point a friend asked me to Skype with her. We Skyped for a while and I felt connected again. Then I made u some memes for  my social media – I post one a day -and watched a stand up comedian on Netflix

The next day was the day of the conference. I felt up for it.I had a significant radio interview to record with Neurotribes author Steve Silberman and that went really well. I still felt fragile but I also felt more confident than I had earlier in the week. I got to the event about thirty minutes before my talk. I set up a table of books and went to the auditorium. When I got on that stage I was prepared and in the ‘zone.’ If I had’t mentioned it at the start of my talk I doubt audience members would have had any idea I had struggled with mental illness symptoms so very recently. I had’t planned to see any friends in Melbourne but I felt so good that I contacted a friend and invited her out. It was lovely and I think it was exactly what both of us needed.

Here are the main strategies I used – most of which are not things I have dreamed up but tried and tested measures to improve mental health:

  • Mindfulness / being ‘in the moment’. I didn’t worry about the future or dwell on the past. This is a very difficult thing to do but I find it helps avert a lot of self-fulfilling mental health prophesies and talking myself into a worse situation.
  • Seeking help. When I was really struggling I called the mental health crisis team (who I know very well) and told them what was happening because I was concerned my health may deteriorate and I wanted a record of it on the file which would be accessed should I need to go to hospital. I also sought support from my lovely friends
  • Setting small, achievable goals. I really wanted to give my talk and it was something to aim for. Having this in front of me  gave me a positive focus on what I wanted to work towards.
  • Positive self-talk. I had some moments where I thought self-destructive activities might be an acceptable course of action. I knew this was dangerous thinking so I reflected on all my protective factors – Mr Kitty, the fact I have co-written a book on mental health and self destructive behaviour would be a poor example for such an author to set.
  • Having some pet therapy with Mr Kitty – a purring cat has actually been found in peer reviewed studies to provide a lot of health befits including reducing anxiety. Plus cats are awesome!
  • Stayed connected with friends and family. I know this is hard because I struggle with it, but when feeling isolated, often the most helpful thing to do is to connect wth others in whatever way you can.
  • Being kind to myself. I didn’t berate myself or criticise myself for being ‘weak.’ I told myself whatever happened it would be ok.

If you are interested to hear more about Autism and mental health, Dr Emma Goodall and I were interviewed on the topic on ABC Radio National ‘All in the Mind’ program Radio National Interview

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Me selling mental healh books

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‘Can I join in please??’ – belonging and Autism

I am currently in the middle of an amazing weekend. I have the launch of my – and Dr Emma Goodall and Dr Jane Nugent’s – latest book, the Guide to Good Mental Health on the Autism Spectrum on Monday and  a few of my Autism advocate friends are here in Canberra for the event. Last night as movie night and today I spent most of the day with my friend Penny – who is here from Melbourne and my friend Tori – who lives in Canberra but is unable to attend the book launch due to work commitments so caught up with us today.I have been reflecting a lot on the value of Autistic community – or any community which is supportive and positive for that matter.

I had issues wiht belonging for many years and joined a number of peer groups which were very unhelpful – socialists, criminals and drug users. The reason for this goes right back to my schooldays where I was the vicim of bullying and abuse. I lost any sense of self worth or pride in who I was. I hated everything about me, even to the point that I sought out negative things. The concept that anyone would like me for who I was was entirely alien. I thought I would only be accepted by a group with defined views and attitudes. I joined the socialists.

My wish to be accepted led to me befriending a man I met through the socialists who was a criminal. Belonging to his horrible group – which comprised the two of us and his anger, bitterness and violence – had some worse consequences than arguing wiht some right wing type at the socialist paper sale. We did criminal acts – me because by then I was terrified of what this man would do if I declined. We went to prison and life got more and more challenging. When I was released I become a drug addict through self-medicating  to manage my damaged emotions. In prison I had been given the diagnosis of Asperger Syndrome but I hated this and ran as far as I could from those words which seemed to me the school bullies worst insult. My Autism was my worst fear realised. It took me seven years before I could accept it.

When I was released from prison in 1995 I spent a lot of time with two women I met in jail.They were not particularly dangerous – just hapless and lacking in too much of a sense of being part of society. One woman stole cars more for fun than anything else and the other had spent one term in jail for defrauding her ex-husband or something. I spent many nights in their house smoking weed and drinking. Sometimes we would go to the pub and get roaring drink. The younger woman would get angry and drunk and threaten people and then attempt to drive home. We drove all over Melbourne in the early hours of the morning. Sometimes we would get totally lost because we were all drunk! The fact that we managed not to get killed several times over amazes me even now. My friends ‘bought’ my TV and VCR from me for $50 each which they never paid.  My two  friends from prison came over one night and gave me valium and other pills. I drank some wine and the mix of the two drugs put me to sleep. My friends had been asking me to ‘sell’ them my very good stereo for some time. When I woke up from my drugegd sleep I found my stereo had gone I never saw my ‘friends’ again. Not the most supportive of peer groups,

Contrast this to yesterday. I had a horrible day. Loads of things went wrong. Somebody called me at 7:20 am about a thing which could easily have waited until lunchtime. I got charged twice for the same  online purchase and had to call the bank and the day was filled with all sorts of irritations. I got home and was really stressed and annoyed. It was movie night so a few of my friends from my women’s group got together, as we do, to watch movies. We had a guest come along too – my friend Penny Robinson who is an amazing advocate and does work for the I CAN Network and Yellow Ladybugs in Melbourne. I explained to everyone I had an unpleasant day and they all understood. We watched a movie called Jack of the Red Hearts about a young woman with a difficult past working with an Autistic girl. It brought up all sorts of difficult past-type thoughts in me but it was great. As always, we were all ‘ourselves’ – something Autistic people can struggle with in the non-autistic world. By the time everyone left at 1 am I felt a lot less stressed. Today I spent a great day with some great friends. We went to the National Museum of Australia and saw an exhibit of 50 years of the TV show Play School. It was lovely and we did some of the interactive things and really enjoyed it. Then we saw an interactive video installation of a chamber orchestra playing various pieces of music in a darkened room. The musicians were video projections around the walls and each of their parts was scrolling past in musical score. I studied piano when I was younger so had a great time seeing the different score for the cello, double bass, violins and violas. The music was lovely too and the whole experience very contemplative. I could have stayed in there all day.

I reflected to my friends how great it was that we now have this community of Autistic friends and colleagues around the world. When I was a child this community didn’t exist in the same way it does now, Young Autistic people often – like me-  had no diagnosis and therefore no support. We felt alien and isolated. Not like the rest of the world, different, less, broken. And now we have the opportunity to belong to a community that states we are ‘different, not less’, that we are ‘infinitely Ausome’, neurodivergent and perfectly wonderful Autistic people. When I was younger I was so hated and invalidated that it took me seven years to accept my Autism. All I could see was the hateful world and how it saw me. I could not be proud of my Autism because I did not like who I was and thought accepting my diagnosis confined me to a world of deficits and abise forever. Now I know that does not need to be the case . In fact the opposite is true. Not only do I not mind at all if people see me out and about and think ‘that lady is a bit different.’ I will actually tell people all over the place about my life as an Autistic woman and author and how much I love our Autistic community. Certainly like all communities, ours is not perfect but it is far better than having to belong to socialists or criminals just because I wanted to be accepted. While I didn;t have the chance to belong to such a community when I was younger,  young people and adults do now and that is something which makes me very happy.

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