You may wonder why my blog title is ‘AWEgust Day 2′. 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 one very lovely person has donated $7.50, 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

Most people know me as Jeanette the Autistic author and advocate. I do a lot of work in the Autism world and that is how I usually identify. Something many people won’t know is that I have another little ‘label’ – this one a psychiatric diagnosis of atypical schizophrenia. I have had this label for one year less than my Autism one so you would think I might have accepted and assimilated it into my sense of who I am, but alas no. My journey to ‘own’ my mental health diagnosis is an ongoing one.

The reason I am writing about this is that I met someone yesterday who I knew when I was in psychiatric hospital a few years ago. When I first met him, he was 21 and a somewhat errant, drug-smoking child of middle class parents. In the ensuing five years he became more and more institutionalised, spending long periods of time in hospital. When I saw him yesterday, he looked as old as me and he would be no older than 26. He has a BIg Issue lanyard and a bag full of Big Issue magazines. I’m glad he is working and I think The Big Issue is a great thing for many people who struggle with various issues. We had a conversation on the bus. He was caring if a little intense and as he disembarked the bus he called out to me to stay out of hospital. I was grateful for his advice but it is advice I ave given myself on a number of occasions.

My Big Issue-selling friend has a very similar diagnostic label to me. Our lives are very different in some ways and astoundingly similar in others. I too have spent many months and years in hospitals and other institutions as a result of my illness. I spent time in my twenties being homeless and institutionalised. What people see now is simply the latest chapter in the book of Jeanette, but I have been in dark places of dependence and self-destruction. Lately I have been thinking about my schizophrenia label and why I struggle to own it. It;s not about the fact it is a deficit or a negative for I can see some useful elements of it, particualrlly around creativity and writing.

I think what I struggle with most is the low expectations that almost everyone has when you mention that S word. I have known a number of fellow owners of the S-word in my life who are conventionally successful – professional employees, academics, artists. One woman I worked with in the past told me that fact about herself as if it were a great big shameful secret. She pleaded with me not to tell anyone, as if it were an undisclosed criminal conviction or a particularly embarrassing and disgusting sexual sin. I imagined this woman worrying that I might tell her supervisor or something. Of course i would never betray a confidence but it concerns me that having schizophrenia should be such a big deal.

Of course like all things I haven’t quite accepted I find it far easier to be strong and confident on behalf of other people. When it comes to thinking about myself I am almost as troubled by it as my work colleague all those years ago was. I know that I need to accept my other label and make friends with it. Like my autism, it is part of me and has shaped who I am today. One difference I notice between the schizophrenia world and the Autism world is that us Autistics have a fair number of high profile role models. We can say ‘but look at Temple Grandin or Dan Ackroyd, or Ladyhawke or Stephen Shore or John Elder Robinson or Susan Boyle…..’ For people with schizophrenia we have a couple of Louies  -Lewis Carroll and Louis Wain and of course the fellow in A Beautiful Mind, John Nash (who I am always compared to while in hospital). For most people, schizophrenia is entirely negative and people who have it are expected to become homeless or unemployed or live sad and lonely lives. I don’t see this as my future and I do not wish that on anyone I know who shares that diagnosis with me but these are the views that low expectations seem to impart to us all. I wonder how much these low expectations affect clinicians treating people with schizophrenia in their care ad how this in turn might impact on the person themselves and what they think they are capable of. I have been told on numerous occasions by hospital staff that I should go on the disability pension, despite having a supportive and well-paid professional job.

I am going to speak at a mental health conference this month, which I am looking forward to. My schizy label will be on display for all to see, including me. I am talking about creativity and my recovery journey. I am really looking forward to it. In fact I am beginning to want to do advocacy around mental health as well as Autism. Some of you may know that I am currently working on a collaborative book about Autism and mental health issues with Dr Emma Goodall and Dr Jane Nugent. The book is due out next year and I am hoping it will open doors around mental health advocacy and bring my two worlds together. Life is a funny little unexpected journey isn’t it?

Indeed, let’s do this thing!

You may wonder why my blog title is ‘AWEgust Day 1’. 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 nobody has parted with any money on my behalf. I’m thinking I may need to donate $100 myself, just to show willing! Here is the link:

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

I have been wanting to write a blog about isolation and loneliness for a while. A lot of people on the Autism spectrum experience loneliness and social isolation. We may struggle to make connections with others or to find a partner. This is not just for older people. In fact many young people on the spectrum are extremely isolated and have few people in their life. For me, I was OK for human contact when I lived at home. I had my parents and my brother and I went to school and saw a bunch of other teens. There were enough humans in my life. In fact I wanted more solitary time. All this changed when I moved out of home. I had a very small number of friends – a couple who I idolised, an older friend who was quite similar to me in many respects (and actually works at my workplace now, some 23 years later – I saw him the other day and said hi). Apart from my housemate, they were my only friends. The housemate got together with a boyfriend and essentially moved out of my house. I was alone in a three bedroom house with nobody to talk to. As I only had three friends I would spend most of my time in the big empty house, waiting for the phone to ring, The friends I idolised were actually not very pleasant people and I think they probably saw me as a little needy and pathetic so I saw them less and less often. My loneliness was almost palpable – I felt physically detached from the human race.

I ended up moving into another house where there were more people – dysfunctional, drug-smoking people but humans nonetheless. Interestingly I was less concerned about the actual individuals I sent time with and the quality of the interaction. Instead I was happy just to have other humans around. As I grew older I met many, many people and lived in all sorts of different living situations. One thing i felt I could never do was live alone. However I was impoverished and had no control over my living arrangements. Despite not wanting to live alone, I found myself in a big flat in Melbourne all by myself. I would talk to a couple of people on the phone a lot. I liked to occupy myself as I found this staved off loneliness. I remember having a party and inviting all my friends and there were five of us.

When I moved to Canberra in 2007 for work I was worried about not knowing any people in Canberra. At first I spent most of my social time with my housemate and soon after got to know some people from my new church and the local Autism organisation, Up until the past couple of years I haven’t had a lot of friends and the ones I have have not always been my first choice in humans to spend time with – more friends through default rather than choice. Now I have a wide circle of friends  – most of them are people I know through Autism advocacy so we have some common interests. For the first time in my life I have a good balance between social time with people I value and enjoy their company and solitary time,

Thoughts on social isolation and connectedness

• The idea that Autistic people do not need or want company is a complete myth. I am yet to meet anyone on the spectrum who has no wish for social contact.
• Solitary time is really important for many of us. It does not make us ‘anti-social’ or rude.
• Social media is a wonderful way to make friends and networks, either in the Autism world or in other areas. Make sure you are staying safe online though – there are predators and trolls out there so use your judgement and ask someone you trust if you aren’t sure about sheather to trust someone.
• Autistic people can and do find partners and spouses. Some people find another Autistic person to love, others find a neurotypical one. There is no formula for this.
• We need love as much as anyone else does. The stereotype of an emotionless, Asperger robot is misleading at best and  insulting at worst.
• It can be hard to meet people – friends and partners. Shared interests are a good place to start.
• A lot of people will value your Autistic manner, qualities and quirks. Things like honesty, sincerity and thoughtfulness are very common amongst Autistic folks and these are sought after qualities in a friend or partner. Never assume people will be prejudiced against you, even if this was the case at school or in early life.
• Always remember when thinking about social isolation and everything else, where you are today is not where you will be tomorrow, next year or in ten years time.
• There is no minimum or maximum number of friends. For some people, one or two close connections is enough while for others a larger social group is preferred.
• I have found that loneliness can be chased away – at least temporarily – by engaging in a meaningful or interesting activity (for me, that usually involves writing something but it will be different for each person).
• Don’t make friends with people just because they offer friendship. Make sure you are avoiding friendships with people who will exploit, abuse or humiliate you. Choose your friends or your partner. Just because friendship or a relationship is offered does not mean you have to take it.

My illustrator friend Andrew and I signing some books…