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)

 

You may wonder why my blog title is ‘AWEgust Day 5′. 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

Today marked an occasion in the ongoing and rather too interesting Jeanette journey. I saw my new, private psychiatrist for the first time. I have lost count of how many of his colleagues I have seen over the years – they all merge into a sort of conglomerate mass of the mental health professionals I have seen in my lifetime. I saw my first psychiatrist when I was five – I probably should have realised that I was in for an ‘interesting’ life there and then! Mental health professionals have been part of my life forever. The fellow I met today is the latest in a parade of professionals of varying quality and value.

I have two significant brain-related diagnoses which impact on one another and in the past have confused doctors leading to misdiagnoses, disrespect and at times maltreatment. Sadly I know that I am far from the only Autistic person this applies to. Autism is a relatively new diagnosis and is often missed by professionals or mistaken for something else (often borderline personality disorder in women and schizophrenia in men). I have had a large number of psychiatric labels over the years. It got so bad that once in hospital during a hypomanic episode I demanded the nurses provide me with a copy of the DSM IV diagnostic manual so I could read through it and figure out my diagnosis myself!

My current – and possibly the most accurate – diagnoses are Autism spectrum condition and atypical schizophrenia, but labels are such a subjective thing – two doctors confronted with the same Jeanette can apparently arrive at different conclusions. I used to set a lot of store by the psychiatric diagnostic labels but now I see them more as a shorthand so that doctors know what medication to prescribe. My new doctor – who works part-time with my former psychiatrist in the public system – has had a conversation or two about my history and presentation. He asked me what I thought my conditions were and I told him I thought I was on the autism spectrum and also had a sort of ‘sampler’ mental illness with a little from the psychosis column, a little from the anxiety one and the depression one and so on. I don’t think he agreed and seemed happier with the schizophrenia one. I’m not sure how I feel about that rather loaded label. As I mentioned on Sunday’s blog, that is something a work in progress.

The labels are a concern though. Partially because some people in the community have a lot of prejudice about this one or that, and also because a ‘wrong’ one can determine how you are treated by psychiatrists and other mental health workers. Having had the misdiagnosis of borderline personality disorder in the distant past, I know how that particular label can mean that one is disrespected and dismissed and treated like you are seeking attention or being manipulative. A practical consideration for those misdiagnosed with BPD is that if you need to be hospitalised, good luck, for hospital is seen as unhelpful in treating that condition. Also it is a label which often means some clinicians harbour some prejudice against you. And so many women on the Autism spectrum are mistakenly given that label meaning they have inappropriate treatment and prejudice to contend with along with everything else.

I like my new psychiatrist. He is respectful and understands clearly that I am paying him so therefore he is my employee, charged with providing advice rather than dictating the terms of my treatment. I know that because I explained that to him as my expectation and he was happy with it.

Some considerations around getting the best out of psychiatrists:

• Learn to be assertive – you may need it! Remember that you are the ‘subject’ of the treatment. As such, the relationship between you and doctor is about helping you.
• In the private system, if you are looking for a new doctor, do some research. Ask people you know with similar health issues what their experiences are. Ask someone in your local Autism organisation if they have a preferred list of psychiatrists and pick from there.
• A psychiatric diagnosis is never final. Seek a second opinion if you don;t agree with the diagnosis you are given initially. And it does;t hurt to be informed about the different conditions and how well you feel you ‘fit’ with some of the diagnoses
• Apparently 20 per cent of people with a mental illness do not have a neat diagnosis that fits in the criteria in the DSM -5. I haven’t seen data but I imagine a lot of people  on the Autism spectrum fit within that 20 per cent.
• Doctors – and psychiatrists – should not be put on a pedestal. They may have qualifications and have attended university for many years, but they are human too. They are just as capable of mistakes and silly ideas as anyone else. If you feel frightened to take your psychiatrist to task when they say or do something you find damaging or unhelpful, it may be time to find a new doctor.
• Medication is hit and miss. If your doctor suggests you take medication (or start a new medication) find out what you can about it, including uses, possible side effects and possible long-term effects. It is your right to ask these sorts of questions of your doctor and also research online. The same goes for any diagnosis you are given.
• Psychiatry is a service, like plumbing or carpentry. If your plumber can’t fix the leaking tap, you won’t ask him or her to come again. Likewise, if your relationship with your psychiatrist isn’t working out, you have every right to find a new one. They are there to help you, not control you. Even in the public system you can ask for a different doctor and state that the therapeutic relationship is unhelpful or damaging.

Pretty flowers and Mr Kitty are also quite good therapists…

You may wonder why my blog title is ‘AWEgust Day 4′. 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

I entered an international poetry competition earlier this year (I didn’t win but I was a finalist). I had to write thirty poems during the month of April and they all had to be on a theme. The theme I chose was Autism month so I got to write thirty Autism poems. Some were great, some were good, some i regretted including. I sent them all to my parents because apparently writing published things and speaking at conferences garner a fair few parental pride points for an adult daughter. I called my mum on the phone, as I tend to do of an evening. She told me that she loved the poems and ‘what is that wonderful word?’ I had used the word ‘alexithymia’ in one of the poems and my mum, who loves words, was curious to know what it means having not encountered it in her literary travels.

So what is Alexithymia? I don’t have a clinical definition but my understanding is that it is when one is unable to connect with emotions. A lot of people on the Autism spectrum experience alexithymia but it is not exclusive to Autists. I have a mental illness as well as begin Autistic which can provide me with some rather complex emotions but I often struggle to know how I am feeling. I remember when I was in hospital once, talking to a psychologist about my mental health. I was crying and looking at the ground but I couldn’t believe her when she told me that I was very depressed. I had absolutely no idea that I was depressed. I had no concept of how to distinguished the ‘depressed’ experience from all the other things going on in my mind.

When I am experiencing illness symptoms I experience lots of things at once. It’s like a particularly unappetising soup with the ingredients of depression, anxiety, anger, fear and a bunch of other nameless nasties. I can usually manage to identify that I a ‘unwell’ but that’s as far as it gets. I also experience crises and meltdowns on top of these things. When I was younger I would be so overwhelmed by unidentified horrors that I would have a meltdown but I didn’t understand what was going on. I was sacred and confused and had about 1000 emotions, experiences and fears demanding my attention at the same time. As a result I would be aggressive or self-destructive. This resulted in a lot of institutional care (and sometimes ‘care’) but I didn’t find that anyone cold help me. Psychologists would ask ‘how are you feeling?’ and I honestly couldn’t answer.

I sometimes have no sensation of emotions at all, even when a lot of emotions should be happening. Today was one of these days. I have been having a lot of low-level mental illness symptoms lately: hallucinations, strange thoughts, altered perception. I have not identified feeling sad or anxious or anything else. I had a period of three weeks of elevated mood (i made my bed every morning – a sure sign something was wrong!). I had a couple of days of anger, which is quite unusual for me. Today I went to work. We had a meeting and I got really upset with one of my colleagues, Things he said triggered off a whole load of identity issues. Then I had someone call me and ask for assistance. He was an anxious somebody and called a few times. This made me so stressed that I asked a colleague to talk to him. At this point I realised that something was wrong. I could’t identify any particular issue but my eyes felt teary so I figured I was probably depressed. Once I have worked out that something is wrong I can start to address the issues and either get help from an external source like my psychiatrist or put in place some of my own strategies.

So Alex most definitely lives here. She is a constant companion but not a friend. I just have to learn how to live with her and discover her secrets. She makes life difficult at times but she can be challenged. Managing the difficulties associated with having a mental illness and being unable to identify or immediately address what is going on for me emotionally is part of the life that is mine. This is what I have and I shall live within it and learn to master it. What more can I do?

You may wonder why my blog title is ‘AWEgust Day 3′. 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

Today is one of my favourite days of the month – the first Monday, as it is the night for my women’s group. I’m going to write this blog in two parts – before the group and after. I will be leaving in about twenty minutes. When I return it will be after the group and I shall reflect on it, or that is the plan anyway.

Before – 6:40 pm

I have been facilitating my women’s group since 2011. It is run by Autism Asperger ACT, the local Autism association for Canberra. I have had two co-facilitators who are staff of AAACT, Julia and Gillian. When the group started I was quite unwell with mental health issues. In fact I missed a good number of groups during 2011 and 2012. The group is for Autistic women and mums of girls on the spectrum  (some of whom are Autistic as well as their daughters). At first I struggled as a facilitator. I felt like an impostor. Why was I doing this? Weren’t there other women that could run the group? I missed half the meetings and was in hospital a lot of the time. Surely I was a terrible fit for this. I didn’t actually think I was up to the task until the first group in 2013, when Gillian started working with me. She did something wonderful and terrifying: she asked the women to say what they thought of the group and what they got out of it. One woman who often contradicted me and I thought disliked me immensely told me how she looked forward to the group and it was one of her favourite things, Another woman said it was the best thing in her life. I realised then that I was helping to provide an environment where Autistic women felt safe to talk about anything and everything. It provided an opportunity for women that they probably didn’t get anywhere else – the opportunity to be themselves, to be comfortably Autistic and to be in the company of people who understood a lot of what they experienced. Wow!

I realised that the women’s group was one of my favourite things. It is real, honest and I get a lot of support from it myself. The thing about facilitation is that you learn from the participants and draw strength and support from them. I always worry that I am too vocal as I am quite an extroverted little Jeanette but I’m sure someone would have said something if I was being too overwhelming and loud. I hope they would.

I find as an Autistic woman that I feel comfortable and safe with many other Autistic women. In fact,when I attended a conference for women and girls on the spectrum in 2009. One of the days was facilitated by Professor Tony Attwood and was just for women on the spectrum. I felt unlike I ever had before. Being among a large group of other Autistic women was like coming home. I deeply understood at that point that I must indeed be on the autism spectrum myself, after years of doubting. Given the difficulties faced by women on the spectrum around misdiagnosis and lack of understanding of the kinds of differences women on the spectrum often shere, having a women’s group seems quite a useful thing to do.

After – 9:42pm

As always, the group was quite wonderful. We had a couple of new people. I always feel like the group is being assessed when new people come and I want to impress them and let them know what a great group it is. Of course I have no idea what they thought. I can’t read facial expressions very well and most new people don’t make a lot of comments. I suppose if they come back next month it probably means they found it helpful.

I always feel energised after women’s group. I feel very comfortable with the regular attendees and I think they feel comfortable with me. They often have a bit of a laugh at my expense, which I love. Women’s group is like my family. I care a lot about everyone and feel very protective if anyone is having a hard time or being mistreated by someone. I am so lucky to have the group. It is probably my favourite part of my Autism world work. I mean, lots of people get to speak at conferences and write things but our group is something particularly special. There’s nothing like it. Thanks to all the attendees – new and old, past and present – who have made it what it is.