It is currently 10:21 pm – probably time for Jeanettes to be in bed. But I just got home after four days in Brisbane for the Asia Pacific Autism Conference (APAC) and I really feel the need to make some observations.

Some background:

I speak at quite a few conferences these days but I was unable to between 2010 and 2012 due to significant illness. Since then, things have taken off somewhat, Autism and mental health career-wise. It is still taking me a while to recognise that, as a friend put it the other day, I am something of an Autism world ‘rock star’ at the moment. I suppose people might think I like this, given my extroverted public persona, and yes, some of it is great. I never get lonely because all my lovely friends communicate with me and I get to share my good message about advocacy and empowerment with an increasingly larger audience. But in terms of the profile itself, I am very uncomfortable about it and don’t like it much at all. So I (correctly) expected the APAC conference to be a place where my increasing profile was evident. My other concern was that my workaholic ways have left me quite unwell with anxiety and related issues in the last few weeks. At one point I thought I would not even be able to come to APAC. That background of anxiety about my capacity to even be there plus worries about my profile meant that I was more apprehensive than excited about APAC.

The conference:

APAC is the biggest Autism event I have ever attended. There were around 1200 delegates, which is a lot of people. We had a welcome event the night before the conference and I caught up with so many friends, simply because so many of my autism world friends were there. I found a virtual art exhibion and was very excited to see six images of my work complete with bio (I took some pictures on my phone and heard someone say ‘Jeanette is taking pictures of her artworks!’ and then I felt self-conscious so I only have four images).

The first day of the conference there was an opening session and one of the mentors in the conference mentoring programme – which I was also part of – gave a five minute speech. I was struck by the Autistic speaker’s passion in comparison with the cool professionalism of the other speakers – mostly CEOs. Now I am friends with a couple of those CEOs so I’m not criticising them at all but it was very interesting to observe. I know a lot of the academics and professionals who were speaking and I can attest that they do care deeply about Autistic people’s empowerment and success. However, speakers who have a lived experience often seemed to come from a very deep place of passion about their subject. I enjoyed listening to both kinds of talks but I was much more moved by the ‘lived experience’ presentations.

One funny thing about the conference was that it was so big that I am sure there were people there I know well who I didn’t catch up with. A lot of people came to talk to me after both of my talks. I spoke about resilience once and employment. The audience was larger in the employment one as it was a symposium and there were less sessions clashing with it. I stood up on stage and told jokes and waved my arms about and maybe imparted a bit of knowledge but people found it really helpful  – well, they said they did! I also sold seven books so came home with a wallet brimming with cash.

Easily my favourite aspect was meeting amazing people and spending time with some of my closest of close friends. As a mentor in the APAC mentoring project I got to meet some young and not so young people and learn about their perspectives. I wouldn’t even be able to start to mention all of them here but it was just amazing. Being with so many friends and colleagues on the spectrum was as if I spent a lot of my time wearing a big itchy jumper. I long to take it off but everyone tells me my arms are ugly and disordered and I must wear the jumper. So I wear it – to the point that I almost get used to the itch, but when I attend an event like APAC (or on a smaller scale my women’s group), we all take off our itchy jumpers and delight in our arms which we know are beautiful, even if other people say they aren’t. I know that’s a bit of an iffy metaphor but I think you get the idea. At Autism events I can be me, I spent a lot of the sessions playing with fidget toys. Now I am an out loud and proud Autistic woman and I might pick up a fidget toy on a bus but I would never do that at work. My managers and colleagues aren’t at all prejudiced but I worry that they would be concerned or not understand (although I may be judging them unfairly because they are the best team in any workplace in the world – not that I’m biased). But whatever the reaction might be, my perception is the relevant bit and I feel a lot more at ease to be as wonderfully Autistic as I possibly can at events like APAC.

So I havd an amazing time. I am now unbelievably tired and need to sleep for some time. I am picking up the Kitty tomorrow. I have a new playmate for him – a very lifelike weighted, toy kitty I bought from the weighted blanket stallholders. Oh, and before I go to bed, one of the stallholders was the most amazing small business, and purveyor of Autism books, games and wonderful fidget toys, Resources at Hand. They sell books by a bunch of great authors (er, and me). Here’s their website: http://www.resourcesathand.com.au/shop/

Goodnight all…

Me speaking this afternoon…

I am 41 years old these days. I have 41 years of memory, experience and personal history which have propelled me to where I am now. The funny thing about my life is that the majority of it was really unpleasant to live through but the last fifteen or so years have been much more enjoyable. This means I often get a painful twinge from a sad moment when listening to music or reading a book. This happened today.

Those who know me well will know that I spent the years from 1994 to 1999 as a prisoner (on and off). This was a loaded, awful time. I was not in such circumstances due to any evil intent. Strange as it may seem I was largely a vulnerable person who was probably more of a victim than a perpetrator, But as can happen in life, I was very troubled and unwell, my behaviour was appalling and there was nowhere suitable for me to go other than prison. While my behaviour was poor and aggressive I did not want it to be. I couldn’t articulate what was going on in my mind even to myself and I had a negative focus which meant I sought out poor outcomes and negative experiences. I could not access help because it didn’t occur to me that it would be something I wanted. Instead I did stupid things and accepted punishment as the only appropriate result. I didn’t try to make my life better and I didn’t think I deserved a better life. I expected to die in prison and I was in such a state that the thought didn’t worry me too much at all.

I suppose I was a classic case of system failure. I needed support and got blame, I needed approrpiate treatment and got the chemical straightjacket of overmedication. I needed self confidence and got abuse and violence.

My mental health issues were well documented and at one point, some person beyond my knowledge  decided I should be sent to the forensic psychiatric hospital instead of prison. I had been told by others who had been there that it was much nicer than prison. The men and women mixed together and they had nurses rather than correctional officers and you were given an incredibly generous $60 per week to buy cigarettes and other important goods. In fact the woman I was sharing a cell with – an older woman with thousands of health complaints who claimed she was about to die every time I spoke with her – convinced me that when you arrived at the hospital they gave you a bunch of things and due to this I should give her all my cigarettes. (I was pretty gullible as a young person and prisoner so parted with all my things only to find out she had tricked me.)

When I got there, the hospital it was like another world. It was the last remaining mental hearth institution in Melbourne and all the other wards were closed, so we were in a little oasis of activity in a disused, crumbling asylum. It was true that the men and women patients cohabited, like in a regular psychiatric hospital. I made friends with some of the guys – the women all seemed a bit needy. One guy, Bob, had featured in a book by gangster turned author Chopper Read. Bob was an older fellow and had been on a high dose of the anti-psychotic drug Largactyl for so long that it had turned his skin a sort of bluish-grey. Bob had killed  people in his distant past but he knew he was onto a good thing at the hospital so was compliant and well-behaved. I was  always a bit wary of the murderers though – if they did it once surely they could do it again. There was another man there whose name i forget now, some twenty years later. This man was so obviously pretending to be psychotic so he could be in the more pleasant hospital environment that it amazed me that the apparently well-trained staff couldn’t see it. This man evidently had a little but of an interest in me sexually. I was never sure if I would be safe.

One night the youngest and nicest male nurse brought along his guitar and a songbook. We sang songs until late in the evening. It was magical. I left the hospital, the prison, the desolate life I had gained for myself and was transported into a better world which had music. Music was a great joy and while I had listened to plenty of recoded music, I had not been a part of making noises – joyful or otherwise – for a long time. One of the songs we sang was the blues standard and frequent avourite of prisoners, The Midnight Special. We sang it a few times. I was taken to a place beyond where I was, beyond who I was. I saw a life I had forgotten existed – a place of creativity and transcendence. The experience stayed with me for a long time and gave me hope. I didn’t stay at the hospital for much longer though. I was self-destructive and aggressive and before too long me and the man pretending to be unwell were on the hard metal van back to our respective penitentiaries.

A couple of years later I did get the assistance I needed and started to change my life. The years of prison and desperation faded into a memory and were almost forgotten. I became somebody who exudes respectability and success. I wrote books, gained degrees, spoke at all manner of conferences, got an amazing professional job and bought a home. People now seek my advice on how they can assist their children and relatives who experience the things I did as a twenty something. My criminal past is confined to another time. If I think of it, I am remembering events and thoughts, not the depth of feelings.

Today I was writing an article and I put on a singer songwriter playlist. Right at the end I heard the familiar start of that song from all those years ago in a different place, The Midnight Special. I stopped writing and listened intently with everything I had. As I had been transported to a better world when I sang the song, I was transported back in time this afternoon. There I was, suspended over history looking at my younger self who I have spent so long banishing and replacing with the more successful, respectable me of now. Today I could have reached out my hand to hers. I imagined myself telling her that it would be OK, things would change, there would be work and friends and cats. Her life would not always be filled with self-defeating behaviour, invalidation and violence, The world gets better.

I listened to the song three times. I felt so grateful to get to meet that past me. And yes, the reason I spend thousands of hours each year on supporting other people, listening, providing advice, writing books and speaking at conferences. The reason I am available to those who need me when it may be against my interests to do so, the high value I place on of community service and kindness all comes from those days where I did nothing useful for anyone. Where in fact I was aggressive, dependent, demanding and difficult. Those days have made me who I am. I suppose I am thankful to my previous self but I am glad I can hold her and tell her it will actually be OK.

I was happily Facebooking today and was in a  conversation with a friend about my talk with Tim Sharp and Professor Temple Grandin later this year and she said something that I do seem to be told rather a lot these days – I was an ‘inspiration’ to her. This always makes me feel uncomfortable. I can’t imagine what a 120 kg, 41 year old, ex-prisoner with a mental illness can inspire in anyone. Then reality hits me – along with the past fifteen years of my life where I have been virtuous and kind (most of the time). All those achievements and accomplishments and awards sit there begging me to pay attention to my positive qualities and why I probably do inspire people and I give my Facebook friend’s comments a bit more space in my mind.

Inspiration is a rather fraught little concept though, particularly in the disability and mental health context. Not that any of my friends are guilty of this, but the media often is. We are sen as ‘brave’, ‘inspiring’ and similar things. Anything someone with a disability does that others would do effortlessly is apparently ‘inspiring.’ There is also this phenomenon where the focus is on people with disability who do extraordinary things that most people would be unable to do. A friend of mine who is an amputee was talking about this the other day. The only amputees that anyone sees in the media tend to be sportspeople, Paralympians usually. The ‘inspirationising’ of people with disability doesn’t do much to help the person with disability who is just living their life and basically that is most of us. Unfortunately I suspect I fit into that category of extraordinary achievers in my own unique way (and I suspect most inspirational types haven’t been in prison but it’s all part of the metaphorical lumpy package wrapped in slightly ripped gold sparkly paper which is me).

I get confused by all these things. I don’t find myself at all inspiring. In fact I don’t find a lot of people inspiring. I’m too busy living my life. And while I imagine that some people might look at me and think I have some kind of absurdly amazing life, the truth is that my life is pretty everyday like other people’s. I go to work, I spend time with friends, I love my family and my cat, I ride the bus to work and occasionally have a holiday.  The things I do which people see as achievements – public speaking, television appearances, writing books and so forth are just other activities I like to do and I feel are worthwhile. I find it amazing that people can raise happy and well-adjusted children. I could honestly not do that. I take my hat off to parents who can do that. For me standing up in front of 1000 people an talking about Autism is far less challenging than baby-sitting my nieces and nephew for an hour. (To their credit, my family have never expected that from me.)

And while I don’t find my life particularly extraordinary, I often find it very difficult. My mental health is in a constant state of flux. I am grateful for everything I do as the potential for me to be really unwell and unable to do much is a constant possibility. I’m sure some people might think that facing that particular challenge and doing all the things I do is inspirational, but its more necessary than inspiring to me. The accomplishments, conferences, books and things give me a strong incentive to stay well and make sure my health is adequately maintained. And as a tip, maintaining your mental health is like looking after a car. It needs constant attention and fine-tuning to ensure it keeps going. My mental health is like one of these cars in Cuba that have been there since before the revolution I think – a bit busted up and threatening to collapse at any time, but expertly tended with unconventional but effective mechanical methods.

So what do I find inspiring? I see inspiration in the small things, the mostly uncelebrated achievements of people with no public profile or fame – Autistic parents empowering their son to communicate, someone who cares for a spouse, relative or freind with Alzheimers or a degenerative illness, the theatre company directors who work with prisoners and have had their house robbed many, many times by theatre participants and keep on regardless, the person who adopts a 13 year old cat and loves him in his kitty twilight years, people who stand up against prejudice with little concern for their own wellbeing. These are some things which flick my inspiration switch. And of course the actual inspiring people in my life are my family. Being me going through all the hell that I did as a teen and twenty something was much easier for me than it was for my family I think. I was in the middle of it and I always had some control. My family had less control and a broader view of where I was heading, which most of the time looked like the grave. My parents now are delighted with where I have ended up but it was not always that way. They stood by me all the time regardless of how rude and desperate I was, how much I expressed anger and hate, all the poor choices I made. I am not inspired by my own life. From my viewpoint, since February 2000 it  hasall pretty much done what I wanted it to do, but I am inspired by those who stood by me when I was incapable of managing my own life.

That’s an inspiring quote I guess

You may wonder why my blog title has been ‘AWEgust′ for a while. The reason for this is that I’m undertaking a challenge to raise money to train more mentors for the I CAN Network. I will be writing a blog post every day between now and the 31 August. So far some good people have donated $18.50 and I’ve had a promise of $93, which is good but I am hoping the raise a little more than that. Here is the link for donations if you feel the need.

https://awegust.everydayhero.com/au/jeanettepurkis 

This will be my last AWEgust blog, so if you feel the need, dig deep and help support the good people at the I CAN Network doing great things to help young people on the spectrum. I often reflect on how great it would have been had they been around when I was a teenager,

27 August

I want to talk about our Autism community and about some things which trouble me. Firstly I should say that compared to most large groups of humanity, I think we’re doing pretty well. There is not a lot of hatred and trolling and vindictiveness between individual Autistic people. Soemtimes there is and it is frowned upon by most. Most of the unpleasantness and hate seems to come from outside of our community, which is unfortunately nothing new – Autistic folks have been hated and discriminated against for a very long time. It is my hope and aim that this will decrease with the application of advocacy but it is a tough battle.

What has been concerning me of late is some of the shaming that is done to people who don’t fit within others’ expectation of what an advocate should do. I found myself on the receiving end of this kind of thing a few weeks ago. I see myself as a pretty strong Autistic self-advocate. I love and value myself complete with all my Autie attributes. I see and promote strengths and not deficits within myself and my Autistic peers and promote this. I spend around 30 unpaid hours each week trying to make the world a more understanding and respectful place for Autistic adults and children. So when somebody suggested I was essentially letting the side down for speaking at an event which they did not like and cast aspersions on my advocacy credentials, I was more than a little bit annoyed. I am very tough and was more irritated than upset at this person’s comments but what about advocates and speakers who are just starting out? Seriously, don’t we have enough to contend with without turning on one another. There we go. End of rant 🙂

28 August

I spoke at a mental health conference today which I really enjoyed. As you may have noticed from my earlier posts, I have been a bit unwell lately with my mental illness. In fact a week ago I was so anxious I was worried I wouldn’t be able to attend the conference today. Despite having improved during the week, I was still quite anxious today when I got to the convention centre. I worried that I wouldn’t know anyone at the conference or that most of the delegates would be arrogant psychiatrist types, but thankfully I knew lots of people (y’know, because I have been involved in mental illness advocacy in Canberra for some time. I guess I forgot). I was speaking in a panel session and I have a wonderful time. Of course I am rarely nervous when I get up on stage. Looking at the empty lecture theatre slowly fill with people who have chosen to listen to what I have to say is alway enjoyable. My talk was well-received. People afterwards said I speak effortlessly. I had them laughing, I got them thinking and at the end of the session I had a long line of eager people buying books and getting Jeanette business cards. It was a perfect entrée to the next conference I am speaking at, the Aisa Pacific Autism Conference in two weeks time. Goodbye nerves, hello confidence!

29 August

Today was a lovely day for me. At 1:40 am I got up to feed the insistent Kitty and checked my emails. There was one from the mental health editor of disability and mental health advocacy organisation The Mighty. I have been in correspondence with her for the past couple of weeks as I submitted a story to them about my own mental health journey and the actions of a very lovely manager at my work who was very supportive when I was realy unwell with psychosis a few years ago. When I submitted the story, it was more to challenge myself to write to their specifications than to have it published. I thought there was no way an international organisation would want anything from a small-time writer like me. Despite this, I did my best – I have such a strong work ethic that I do everything to the highest standard I can. Three days later there was an email from the emtnal health editor at The Mighty saying that she would ‘love to publish your story’. Then came a week or so of anxious email-checking whenever I woke up. And today at 1:40 the email was there. I read the story and saw that they had edited it for length so it was not quite ‘mine’ but it flowed nicely anyway. I feel so proud and honoured to be featured in this forum. I am also excited to announce my ‘other’ diagnosis – atypical schizophrenia – more publicly. I have always struggled to accept that particular label but I am getting much more comfortable with it. Here is my story if you want to read it:

http://themighty.com/2015/08/why-i-lived-openly-with-autism-while-hiding-my-schizophrenia/ 

30 August

I had a relaxing day today. That might sound usual for a weekend but for the past eighteen months I have not stopped. Life has been full and challenging and exciting. But today – apart from practising a couple of talks – I had a day off. And it was lovely. I’m about to pour a glass of wine and watch television. Ahhhhh

31 AWEgust

This is my last AWEgust post. I haven’t raised a lot of money yet but I have enjoyed the process of writing these blogs. Since I started out on 1 August I have:

• Written 31 blog posts
• Had a story published in The Mighty
• Spoken at a mental health conference
• Had two movie nights and one women’s group
• Finished my part of a collaborative book on Autism and mental health
• Written some poems
• Painted some paintings
• Been approved for an ACT working with vulnerable people card
• Laughed at cranky picture of me on said working with vulnerable people card
• Had dinners with lots of good people in the Autism world
• Worked full-time
• Been invited to deliver a keynote speech at one conference and speak at another
• Cuddled Mr Kitty
• Cuddled Mr Kitty some more
• Talked to my Mum
• Talked to my Dad
• Talked to some other good people
• Had a guest blog on my higher education journey published in Tasmania
• Eaten 31 dinners, 31 breakfasts and 31 lunches (and some snacks)
• Listened to a lot of folk music
• Celebrated my dad’s 70th birthday
• Interviewed Professor Tony Attwood, Emma Dalmayne, Geraldine Robertson and Anita Lesko and Abraham Nielsen for Jeanette’s Autism (radio) Show
• Sent out four ‘Jeanette’s Weekly Emails’
• Had church at the Mawson Club (twice)
• Prepared for the following talks:
  • Employment presentation at Asia Pacific Autism Conference
  • Resilience presentation at Asia Pacific Autism Conference
  • Creativity and recovery talk for The Mental Health Services Conference
  • Presentation with Professor Temple Grandin and Time Sharp in November
  • Mental Health and Autism talk for expo in November
  • Education and Autism talk for the Autism Teaching Institute (have been giving a talk there each year since 2006)
• Been interviewed for the ABC Radio 666 Sunday Brunch programme
• Lots of other things….

Thank you for reading these blogs. Please feel free to donate some money to the I Can Netowrk. They are doing some great things.

 

What more fitting way to bid my AWEgust challenge farewell than to post an image of me speaking about Autism and resilience for TEDx Canberra.

 

 

 

 

20 August

Stupid alexithymia! I feel…er…you know, not good. Kind of tight in the eyes. Angry? no. Sad? I don’t know. I know emotions can be unpleasant but it would be really nice to actually be able to describe which one I’m having. (And for this who haven’t come across this before, alexithymia is an inability or difficulty in accessing emotions. It is relatively common amongst autistic folks but others have it too. It makes sessions with therapists kinda challenging and can impact on correct diagnosis of mental illness conditions). Even after 41 years of life, I still struggle to identify what feelings I am feeling.

21 August

And further to yesterday’s post, I discovered an emotion for the first tine ever and I am really, really stressed! This is bad because I feel really stressed, but good because usually by the time I access stressed I am completely unglued. So I have earned a reprieve from serious mental health unpleasantness (hopefully) and have some time to address the stress. So, less unpaid work, much less social media, more kitty time, more reading books and less writing them, more time with friends and less time fixing all the world’s problems. All of this requires a degree of assertiveness. So I need to  learn some assertiveness given that I don’t have a lot. I will reclaim my spoons! I love a good battle so Jeanette’s anxiety, consider this a call to arms!

22 August

OK, so the no social media thing is hard. I am quite accustomed to looking at Facebook every time I get a spare minute and then spending hours responding to things. But no more! Although I sort of undid my good intentions by posting the link to my radio show where I interview Tony Attwood and practically everyone in social media land responded. I have decided to try not to go online until the show actually airs at 8 pm tonight and then respond to people and send my weekly email. I have my lovely friend coming over this afternoon and we’re going to watch DVDs and eat ice cream and drink wine. I really like the sound of that! And now I’m going to save this and watch TV.

23 August

I had something I haven’t had in living memory…a weekend. I did a little work – particularly around promoting my radio interview with Professor Tony Attwood and practising a couple of talks. But apart from that, it was mostly friends, TV and DVDs. I was lying on the couch at about 8:30 pm thinking ‘I don’t have to do anything. wow!’ It made me realise just how much I have been overworking of late and I have resolved to address this. I said no to somebody’s offer of a catch up while at the APAC conference – I will need my solitary time after all that social time and people wanting business cards and selfies (this seems to be the done thing at conferences now to take selfies with the presenters. Seems a bit odd to me and I tend to only do it if the presenter is actually a friend of mine). I postponed a conversation with a psychologist friend about risk assessments for suicide and self harm -I figured that I probably have lots of interesting points to make on this topic but it may result in me feeling crappy. Yup, Jeanette is taking her life back from the overwork monster. It feels good.

24 August

A difficult day at work today. I was stressed and I kept projecting my stress ono my feelings about colleagues. It took me a long time to work out that this was happening, so I spent most of the day avoiding people that I thought were horrible ableists who must surely hate me. I was glad to get home. This is a particularly honest post because I usually talk about all the positives of begin employed – and there are many. But sometimes it’s just bloody hard to get through the days without crying or yelling at someone. Thankfully I did none of these things and got home to an evening of cuddles with my little kitty man. I hope tomorrow will be easier.

25 August

Today was better at work and I got to catch up with some Autism world friends and colleagues for dinner. It was an interesting dinner. As always, I am so happy to be in a peer group of people like me. Had I known when I was 15 about all the friends I would make from amongst the ranks of fellow Auties, I think my world may have been a happier one. It’s funny how humans relate to other humans with similar experiences a lot of the time – but not always. One topic of discussion at dinner was when other advocates or people we see as role models get into public arguments with one another or behave in an aggressive and competitive way. We all agreed that it was rather disappointing when this happens. I think our community is very positive most of the time but we are human too and sometimes we do regrettable things. And I love the corner of the Autism world I currently inhabit. I feel like I am making a difference, which is all a Purkis can ask for. Oh, and dinner was delicious too.

26 August

I had the first day of not being extremely anxious and unhappy in a while. It feels good. One thing I hate about my mental health that it can be so unpredictable but I am learning new strategies to deal with it every day. I am actually looking for to the two large conferences I will be speaking at in the next two weeks instead of being terrified. I realised that I’m an extrovert, I like being on stage, I know my stuff and people have paid to listen to what I – and others – have to say. So roll on TheMHS conference on Friday and Asia Pacific Autism Conference on 9-11 September. I have put links to both if you are interested.

APAC

http://www.apac15.org.au

My speaker bio for APAC (I am an invited speaker – yay!!)

http://www.apac15.org.au/index.php/about-us/speakers/34-speakers/114-jeanette-purkis-1 

TheMHS (Mental Health Services) Conference

http://www.themhs.org/pages/themhs-conference-2015.html 

Happy Wednesday all 🙂

Me patting a beagle. Not sure why

 

 

 

As I have mentioned before, I have alexithymia – sometimes rather endearingly nicknamed ‘Alex’ by people who have it. ‘Alex’ is an inability to connect with one’s emotions. So you can be sad or angry or happy and have no way of actually identifying what the feeling is. For me, all I usually manage is ‘I feel good’, ‘I feel nothing’ and ‘I feel bad’. This has meant that in the past I have become very unwell with mental illness due to ignoring anxiety or depression and not noticing quite how difficult things had become. I have never identified emotions by myself and it has usually required interventions form various mental health professionals to point out just how depressed or anxious I was.

Over the past few weeks I have noticed some mental health discomfort. I was quite irritable for some weeks and I felt a lack of motivation. My forehead was tight and my eyes felt weird. I have had this in the past and I usually just call it ‘unwell.’ If ‘unwell’ comes with attached delusions and hallucinations, I call it ‘psychosis’ because that is what doctors have taught me those things indicate. Mostly however, the whole thing is just a mass of unidentifiable feelings and experiences that make no sense to me.

Yesterday something new happened. I understood what the ‘unwell’ feelings I was having were: anxiety. Quite considerable overwhelming, daunting anxiety. Wow! And once I unlocked the anxiety ‘code’ it let the floodgates open and I could feel the physical sensation of anxiety. While this is not very pleasant I think it represents a huge breakthrough, for while I can feel the emotion I can address it. People had been telling me for months that I was working too hard, taking on too much and potentially threatening my mental health and I largely dismissed their concerns, being unable to understand what they meant. I felt OK so i didn’t need to change my working habits. Now I understand what they were getting at. I have identified the biggest stressor – email and social media. Every time I check my email, I am either anxious that there will be something there I don;t want to deal with or excited that something good will be there. As a psychologist once told me there is a fine line between anxiety and excitement – they are very similar chemical processes in the brain but one is associated with positive feelings and the other negative. So if I am not careful, my excitement can easily turn to stress. The other issues – probably the biggest – is social media. I love my social media family but not everyone I encounter on other pages or groups is friendly and I worry that people will write awful things about me or get n some kind of disrespectful argument with me (I have inherited my family’s hatred of confrontation and tend to avoid it at all costs). So I worked out that I need to limit times checking social media and emails and to be in a space where I feel confident to do that.

I think I will be OK and I should point out how lovely friends have been to me over the past few weeks while I was making this amazing discovery. I have many strong and effective weapons in my arsenal against mental health nasties: good friends, a loving family, self-esteem, a positive attitude and a black cat. I can do this and I think I am one step further along the road to self-awareness and wisdom. And I’m always happy to share tips I gather along the journey. Now I’m going to go and listen to myself interview Professor Tony Attwood on my radio show – we talked about mental health and anxiety. Here’s the link if you want to listen too http://www.blogtalkradio.com/positivelyautistic/2015/08/22/positively-autistic–jeanettes-autism-show

Anxiety doesn’t stand a chance against cuddles from Mr Kitty

Some of you may have seen my pictures on Facebook. My mummy likes to show them off to everyone. I get embarrassed sometimes when she puts one of me standing on the toilet but hoomins like showing pictures to other hoomins so I don;t mind so much.

My name is Hieronymous Bosch Kitty Purkis the Second. Mummy gave me my name two years ago but she shortened it so most people call me Mr Kitty. I try to look after my mum because she needs someone to look out for her and most of the time she is by herself in her flat. She gets really scared sometimes and really sad so I give her cuddles.

My mummy needs my love but I need her love too. My mummy is not the first hoomin I have lived with. I barely remember it but there was a family when I was a tiny kitten. They played with me and we all had fun but as I got bigger they paid less attention to me until one day they drove me out into a big scary paddock and just left me. I cited and cried but nobody heard. I spent so long all alone. Nobody patted me, I had nobody to talk to and I had to defend myself against other cats and dogs and kill mice and birds for dinner. I just wanted somebody to cuddle me and tell me they loved me but it was just me on my own.

One day I smelled a delicious smell which reminded me of the time I had my hoomin family – canned cat food. I ran straight towards the smell, ate the cat food and heard a sharp snap behind me. I was in a cage and I could’t get out! I was terrified but in the morning a nice lady came and took me into her house. She thought I was somebody’s cat who had escaped from the vet clinic she owned and took me the house of the lady who had lost her cat. The lady said ‘that’s not my cat’ and back I went to the vet’s house. Another lady who had a kind smile and gave me lots of cuddles took me to her house. I was going to have a mummy again! I was excited. But the nice lady had lots of cats and I was scared. I swiped at them and hissed so I got put in the bathroom by myself. I didn;t know what was happening and was very scared. Then I got taken to another house. I was in a cage and I saw this big lady wearing a blue shirt. She picked me up and held me to her face. I could feel the love coming out of her every pore. ‘You’re beautiful’ she said and cuddled me like her life depended on it. I started to purr. The kind lady with all the cats left and it was just this new hoomin and me. She gave me some delicious food and lots of cuddles. We got to know one another. It was a difficult start – I woke up mummy because I got stuck in the shower recess. She stood on me in the middle of the night (I am a black cat and she didn’t see me).

It took me a long time to get used to my new life. I wouldn’t eat when mummy was at work because I worried she might not come back. She cuddled me so much and told me many, many times each day how much she loved me. She would say ‘Mr Kitty, you’re beautiful and I love you.’ And we would cuddle each other. My mum isn’t perfect though. Sometimes she does things I don’t like. She takes me to a cat prison every few months. There are lots of cats in there and no mummy. She tells me it’s called boarding but it’s scary and I try to escape. But she always comes back and tells me about what she was doing when I was in cat boarding prison. She tells me about conferences and disability and mental health advocacy. I don’t really know much about that but I hear other hoomins tell mummy how she makes a difference in the world so it must be good.

Mummy isn;t always happy and bouncy. Sometimes she is sad. She works and works, staying up late and forgets to cuddle me or play with me. I go up to her and say ‘you’re sad and you need cuddles’ but she does’t listen. I rub up against her and then nibble her ankles. My mummy needs me and I need her. My favourite thing is when she goes to bed. I jump on the bed and play but then when she gets sleepy I snuggle up with her. I climb under the covers and lie down on the pillow next to her. She puts her arm around me and plays with my paw and I purr like there’s no tomorrow. I love when she has visitors too. Mummy has a night with some nice ladies every couple of weeks. They look at a movie on the TV and talk about all sorts of things. Mummy really loves these nights too and I play with all the ladies and climb in their handbags.

I think I’m a very lucky little black cat to have a mummy like mine. I need to look after her too though because she gets sad and confused and needs me. – Mr Kitty

I like this picture of me. Mummy likes it too

You may wonder why my blog title is ‘AWEgust′. The reason for this is that I’m undertaking a challenge to raise money to train more mentors for the I CAN Network. I will be writing a blog post every day between now and the 31 August. So far some good people have donated $18.50 and I’ve had a promise of $93, which is good but I am hoping the raise a little more than that. Here is the link for donations if you feel the need.

https://awegust.everydayhero.com/au/jeanettepurkis 

17 August

Today was a reflective day after a reflective evening. I was thinking about myself and my work in the Autism world. I wondered what my motivation for doing what I do was. I mean I put in around 20-30 hours per week of largely unpaid work. Advocacy, speaking and writing takes up almost all my free time. Mostly I love it. I like to be occupied and I like recognition and these are two things I seem to get rather a lot of in recent times. This got me to wondering whether I am self-serving and my motivation for helping people is in fact a wish to help myself and my profile.  When I thought about it I couldn’t work out whether this was a necessary part of the work I do. I mean if the work comes with an attached level of recognition, it doesn’t really matter what I think about the recognition as it is an integral part of the worlk. At this point I gave up and cuddled Mr Kitty and had a cup of hot chocolate! When I awoke this morning and thought about it, I realised that it probably doesn’t matter what is motivating me to do my voluntary work. I think I probably help a lot of people and make a difference, so if the trade-off is that people say ‘ooh, we love Jeanette’ it probably doesn’t matter all that much.

18 August

I had an experience today which served as a strong warning to ensure I am a kind, humble, caring human being rather than an obnoxious, egotistical narcissist. You may wonder why I m concerned about this. Well, the experience I had brought home to me that who I see when I look at myself and who others see might not be quite the same person. I was recently asked to deliver a presentation at a forum. I agreed and quickly drafted a presentation and sent it through to the organiser for her consideration. After not hearing back for a week  I followed up with an email. I didn’t hear back so  – being anxious that she hated my presentation – I called her. She was away from her desk and had no voicemail. I resolved to be less anxious and ‘possess my soul in patience’ (as my mum would say). Five minutes after my phone call, I got one of the most apologetic emails I’ve ever had from this poor woman thinking she had offended Jeanette. I felt dreadful and sent a response letting her know that everything was OK. We were evidently coming from different viewpoints – me being worried my talk was terrible and her being concerned that she had offended an experienced speaker. At this point I realised that there is the potential for me to get carried away with all the recognition I have had lately and turn into a hideous ego-monster. And if I ever do, please, please let me know as I would hate to be like that. I want to help people, not terrify them and make them send off panicked emails.

19 August

Today my lovely dad, who all the family call ‘Dub’ for reasons almost lost in the mists of family history, turned 70.  My dad is the nicest man in the world (OK, I may be a little biased). He is generous, funny, creative, sensitive, talented and the best dad a gal could ever have. Keeping this in mind I reflected on my history as a Purkis. People who know me now probably have no notion of just how monumentally screwed up I used to be in my teens and twenties. I was negative, something of a victim, angry at all the wrong things, confused, sad, isolated, wilful, without much of a moral compass, unknowingly and unintentionally extremely selfish, stubborn and miserable. I wanted bad things to happen to me and actively sought such things out (and got them, in spades!) My life lurched from one disaster to the next. Everyone who knew me – including family members – thought I would not survive or would spend the rest of my life in institutions if I was very lucky. But this was not to be my future. Instead, I turned my negative focus into drive and ambition and set about changing my personal universe for the better. Within eight years of deciding to change my life, I had a Masters degree, a published book, a professional job and a mortgage. I was about as conventionally successful as a homeless, drug addict and criminal can become. And things improved from there. I overcame obstacles and challenges, I built my resilience and I wrote a bunch more things. I became the Jeanette I am now and I rather like her. And almost all of this I can credit the faith and love and support from my family. They were there at every step of my journey, even the steps which looked as if they ended with a precipice. So happy, happy birthday Dub. You are truly wonderful. I suppose one gift I can give my dad is the way I invested his love and support and saw it pay dividends in my life. Thanks 🙂

Me signing things….

You may wonder why my blog title is ‘AWEgust′. The reason for this is that I’m undertaking a challenge to raise money to train more mentors for the I CAN Network. I will be writing a blog post every day between now and the 31 August. So far some good people have donated $18.50 and I’ve had a promise of $93, which is good but I am hoping the raise a little more than that. Here is the link for donations if you feel the need:

https://awegust.everydayhero.com/au/jeanettepurkis

11 August

One very important thing is that my mum is lovely. She is a fellow member of the Aspie club which does mean she is usually completely honest. She also generally has only one explanation for things. For example if you ave nightmares, the only reason thais would happen, as far as my mum is concerned, is that you must have been hot in bed. I told my mum today that my mental health was improving, She suggested her usual answer (hormones, apparently). A little exasperated I said ‘don’t you think if it was one thing I’d fix it?’ My lovely mum responded with ‘You would. And then you would tell everyone else how they could fix it too. You’re good like that.’ That’s probably one of the nicest compliments I have ever received, especially given that my parents both value social justice and community activities very highly so giving other people advice on how they can improve their lot rates very highly int heir minds. Very happy daughter here.

12 August

I had a big day today. I got up at 6 am as I usually do and got ready for work. I then worked for seven hours, went to the bank and gave them my coins ($60 – yay!), picked up my weekly medication and went home. Then I did one of the coolest things I have ever done. I interviewed someone for whom I am just a little bit (actually quite a big bit) of a fan – Professor Tony Attwood. We had a great conversation and Tony made me feel like a colleague. I guess I am a colleague. I will air the show in a couple of weeks but it was quite a wonderful thing. If you don’t know Tony, have a look at his work. He has some very popular books on Autism and Asperger’s including ‘The Complete Guide to Asperger Syndrome’ and a collaboration with Craig Evans and Anita Lesko and a bunch of mentors (including me), ‘Been there, done that, try this!’ It really was a career highlight. I then has some dinner and interviewed another person -Autism activist Emma Dalmayne . Emma was also amazing and I really enjoyed interviewing her. I am now going to catch up on Facebook, wash the dishes and go to bed….ready for another busy day tomorrow.

13 August

I awoke to find out I have been accepted to be published – following a small amendment to my story – on a rather significant website which I won’t name here because I’d rather wait until my piece is actually on there. It was a real surprise. I actually only submitted it to challenge myself to write to their specifications. Apparently my story was inspiring and moving, which is funny because I thought I was just writing down some events. I’m like that with my writing and art. I imbue it with unintended meaning. I was the same when I played the piano. I used to get high distinctions in my piano exams and win eisteddfods without having any idea how I made such poignant, beautiful sounds.  People think I have a gift for art and writing and maybe I do  but it’s actually just a way of communicating ideas and feelings I can consciously access. I imagine a lot of Autistic writers and artists are like that.

14 August

Movie night tonight. I love movie night. It is basically a bunch of my friends from my women’s group getting together at Whimsy Manor and watching films and chatting about our lives. And pizza. There is pizza. I love that I can host such a thing. I mean, Whimsy manor is quite small so we are all squished up but no-one seems to mind. It is easily the highlight of my week. Mr Kitty loves it too. It is so nice to have good friends who want to come and spend time with me and with each other. It is a space to talk about everything – to have a whinge about someone who is driving you crazy, to share good news and aspirations, to share tips for navigating the world, to draw pictures and watch films. And if you are me, it is a space to read people your poems or stories. I love it.

15 August

Today was a busy Saturday. I practiced a bunch of talks and went grocery shopping, did the washing and had my radio show. The radio show was very interesting this week. I interviewed a woman in the UK called Emma Dalmayne who is a writer, a mum of kids on the spectrum  and an activist trying to protect Autistic kids from brutal ‘treatments’ such as chelation and bleach enemas. Despite begin illegal, some of these practices are still happening. It does make me wonder. I mean if neurotypical kids were being forcibly given bleach enemas one thinks it might be met with outrage by, well everyone but many people do not even know that these things are happening to Autistic kids. We are all precious and just because someone doesn’t speak or communicates differently does not make them less of a human being. I really hope that Emma and her activist colleagues manage to put a stop to this abuse. I am interviewing one of her colleagues, Fiona O’Leary, later in the year too so keep an eye (or an ear) out for that one. To borrow a slogan (and I hope the slogan’s authors don’t think I’m being disrespectful to their cause because I certainly don’t intend to be)  ‘Autistic lives matter.’

16 August

One big beautiful sunny Sunday. A sleepy cat in front of the heater, a book on the chair, lunch with church friends and many presentations to practice. A day I realised that there are people who value and respect me in the Autism and mental health communities. My life is complete and amazing but also confusing and strange. As an Autie woman who spent my youth trying to be accepted by any group which would have me, being the ultimate social chameleon, I have a good dollop of identity confusion. I wonder who this Jeanette that people see is as I think they see someone who isn’t who I think I am.  I like the recognition but I feel it might not be directed at who I think I am. So I worry about all of this for an hour or two, have a glass of wine and cuddle Mr Kitty. ‘Life’s too short to worry about this stuff’ I say then listen to my prerecorded interview with Professor Tony Attwood which I’m broadcasting on my radio show next week. Mr Kitty asks for dinner and falls asleep afterwards, snoring gently. He’s the best of good things. He couldn’t care if I wrote a bestseller or if I was unemployed. I am his mum and that is all he cares about.

What Jeanette looks like 1/2 an hour before giving a TEDx talk…. Not sure why or if this pic is relevant but I like it. It makes me look innocent I think

 

You may wonder why my blog title is ‘AWEgust′. The reason for this is that I’m undertaking a challenge to raise money to train more mentors for the I CAN Network. I will be writing a blog post every day between now and the 31 August. So far some good people have donated $18.50 and I’ve had a promise of $93, which is good but I am hoping the raise a little more than that. Here is the link for donations if you feel the need:

https://awegust.everydayhero.com/au/jeanettepurkis

6 August 2015

I have decided to change the tack of this month of blog posts to raise funds for I CAN Network. My errant brain is, well erring. The stupid thing decided that depression was what I needed and heaped it on in good measure. As such, writing 1000 words each day may be a little too much so rather than giving up the challenge, I have decided to complete the month using 100-200 word posts and include all the entries in a series of periodic blogs.

So today was a tricky day. I felt unmotivated at work which is a very scary sign but I pushed through it. I also told my mangers I was having a hard time and they were lovely. So now I have identified the issue I can get on with improving my mood. I’m always up for a challenge!

7 August 2015

All I can say is that there are good people in my life. There certainly weren’t many of them 20 years ago but lately all these amazing humans have come into my world. At work, my Director came and sae me just to check I was OK, as did my Branch Manager, I got some of my enthusiasm back and worked like some kind of hybrid ant/bee thing. (Only I didn’t make honey, I made notes and emails and a couple of phone calls. I don’t think ants or bees can do that but then, I can’t make honey!)

I also had a lovely friend tall me about submissions for the online group ‘The Mighty’. My friend is an Autism advocate and wanted me to raise the profile of Autistic people…but I wrote a story about schizophrenia. I didn’t really plan it, it just came out. Oddly enough it was about a lovely manager I had in 2011 who is probably the reason I managed to keep my job during that period of illness. Her support while I was very unwell was what helped me to get back to where I am now. As I say, my world is full of good people. I wish the same could be said for the lives of everyone I know.

8 August

Today I interviewed wonderful Autistic author Anita Lesko and her fiancé Abraham Nielsen for my radio show. They were so lovely. We recorded our conversation on Skype and we had the video on. It was 8:00 am on a Saturday after a late-ish night for me so I looked like some kind of undead creature like  a vampire or a recently zombified villager. Anita and Abraham had cowboy hats on and even I could see that they were very much in love. The interview gave me warm fuzzies which may well last for several weeks. So yes, for those who are asking, Autistic people do fall in love, get married, have kids and grieve when someone we care about dies. We are not emotionless robots who just spew out facts about Doctor Who and trains. We are just as human as everyone else but we use a slightly different operating system.

9 August

I am finishing proofreading the collaborative book on Autism and mental health I am writing with Dr Emma Goodall and Dr Jane Nugent. All the content is in, we have an introduction, a glossary and four pages of references. The entire document is 80,000 words and my poor old laptop struggles every time I do something with all the text (like making the font and text size consistent throughout). This book has been my passion since 2013. It has undergone at least four iterations (of varying degrees of quality) before it got to a stage suitable to  attract a contract from the publisher. I must really care about it as I’m not usually that persistent. In the process of writing it I have learned many things about the topic and myself, had no less than three major panics about it and also made very good friends with one of my co-authors. A book will change your life is what I say to aspiring authors. Both of my earlier books have changed my life in their own way. I wonder how this one will change my life?

10 August

Today I was approved for a working with vulnerable people card. This is one of those risk management things to ensure that when one volunteers or works with people deemed to be vulnerable – e.g. children, the elderly and apparently people on the Autism spectrum – one is not some kind of scary psychopath. Unfortunately my younger years involved a lot of scary behaviour on my part. It is a vast understatement to say I am not proud of these things In fact the main reason I volunteer about half of my productive time trying to make the world a better place  is that I am ashamed of the first 25 years of my life and all the dreadful things I did.

So today when I got the call to say I had my application approved I was absolutely delighted. I have had a few jobs and volunteer roles requiring character and police checks and they always terrify me. This isn’t because I think I will be knocked back, for I have not done anything in the least bit dishonest since 1999 and I am at pains to abide by any laws, protocols or guidelines that come along. I have also gained a lot of valued social roles such as author, Masters graduate, official and TEDx speaker to name just a few. The reason I hate applying for these sorts of things is that I feel like I am putting my soul on the line. It brings up all these horrible feelings about who I am and whether I am a worthy human being. So I am very happy that I got my working with vulnerable people card. And hey, I can work in a school if I want to now! I(but i won’t because large groups of teenagers fill me with dread)