Reflections of a reformed character…

Most people don;t know this, but ‘Reflections of a reformed character’ was the provisional title for my autobiography, ‘Finding a Different Kind of Normal’, which I have been reading recently. For those who have not yet come across it, the book looks at my life up until age 30 – moving through a fundamentalist Christian childhood, to a socialist adolescence, then a criminal and drug-infused early twenties and finally to a happy student who accepts her Asperger diagnosis. I haven’t read it in years – I mean who would? It’s my autobiography after all. I should know what’s in it!

Reading the book has put me in rather a reflective frame of mind. I thought I might share my musings with you good inhabitants of blog-land.

I basically made every possible mistake imaginable in my teens and twenties. I was negatively focussed and as such did negative things. I identified with the dark, the evil and the malevolent, but mostly I think this was related to my own negative self-image and hatred of who I was. When I was given my Apserger diagnosis (i was in prison – long story), I rejected it almost instantly. I refused to be a strange, nerdy, book-loving person – which was what I thought the diagnosis entailed. I was cool. I was bad and I was not someone’s strange oddity and target of bullies! Desptie the fact that the diagnosis could have led to me accepting and loving myself and joining the Autie community, instead I chose to embrace the druggie and criminal community. I spent years doing dangerous, self-destructive and self-defeating things, I chose the life of a prisoner over the life of a loved Autistic daughter.

By the time I had left prison for the final time, I was homeless, institutionalised and sad. I had no friends. For over twelve months, the only people I spook to regularly were my parents and my brother. I wonder now how on Earth I accomplished what I did. I left prison in February 2000. By late 2003 I had a Bachelors degree, by 2004, an Honours degree, by 2006 I had a Masters degree and a published autobiography. By 2007 I was a graduate officer in the Australian Public Service. By 2007 (a bit later), I had been promoted. By 2008 I owned a flat, by 2009 I had been promoted again. It goes on. I don’t think I can even remember all the things I am doing now to put them on this list. I somehow went from less than zero to Aspie super-hero in a few years.

I do not take the credit for a lot of this. Certainly I have some good qualities which enabled me to rise above the negative and foul and carve out this amazing, perfect life of mine. But I didn’t choose those attributes – they’re simply part of me. I inherited them rather than making them. I credit a few things other than any skill on my part for the changes in my life. I’ve heard people working in criminal justice or drug programs say that people who overcome those lifestyles always have someone that loves and trusts them. I have always had the love and support of my family. Not just my parents, but my brother, his wife (and more recently my lovely nieces and nephew), my extended family in the UK, my grandmother who wrote to me every week when I was in prison. I have the letters – every single one. She died at 100 and saw me last when I was in 3rd year of my Bachelor degree. My extended family in Australia were also supportive. Another thing which kept me going was my faith in the divine – I”m not going to preach but that has got me through a lot of sticky spots and I carry it with me everywhere.

I suppose the lesson from all of this is to never lose hope. You do not know what is around the corner. In 2000 when I was a homeless, friendless, mentally ill ex-prisoner, life probably didn’t seem all that appealing. It would have been easy to give up. But through the support I received and my own resolve and determination, I became a happier and rather fulfilled me. You really never know what’s around the corner.

Here’s the link to my autobiography, if you are interested to check it out:

http://www.jkp.com/uk/finding-a-different-kind-of-normal.html

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Little me. She does’t know what;s in the future…

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What if the treatment makes it worse

I haven’t written much about mental illness in this blog, despite promising to from the outset. This is an attempt to remedy that. I have a mental illness. It has gone by many names and descriptions over the years but at the moment, my official ‘label’ is atypical psychosis and Autism with a differential diagnosis of schizophrenia (a differential diagnosis means a doctor other than mine has given me that label and my current doctor respects their opinion). Whatever it’s called, it can be really challenging and general irritating.

Over the years I have been admitted to hospital for this illness on more occasions than I can count. Hospital is where they send people that are at risk of damaging themselves, others or (in my case) their reputation. Most people there are incredibly sad and vulnerable. I should point out that I have that hyper empathy thing that a lot of people on the Autism spectrum seem to have. It means that if I am in th company of a person – or ward full of people – who are very sad, I acquire the sadness, almost as if by osmosis. I am also very vulnerable and helpless when I am unwell. I am easy prey for bullies and sexual predators – of which there tend to be a good number of in the psych ward at any given time.  I also have communication issues so can’t usually tell if  someone wants to hurt me until it is too late.

Naturally all of these considerations means hospital is a pretty traumatic place for anyone and especially so for me. These things are not the worst part of hospital though. The worst part is a structural issue which results in people losing their personal power and independence. This is how it works. Say I am unwell with psychosis. I have been struggling to stay at work. I am confused. I think I’m dead and in purgatory and that I have angered God. I have felt for months that I am alone and nobody can help me. The television has started to talk to me and there is a ghost in my flat which watches me while I undress and is going to kill me. Then some nice police officers take me to hospital. Somebody cares about me and wants to help. I get to share a room with another lady and she keeps the ghosts away. As I recover I realise that I have to conform to the rules and structure of the hospital. The more I do this, the more the nurses and doctors tell me I’m getting better. I have to let go some of my control and independence but this is good. I’m becoming a healthy person. Eventually I go home.  The hospital gives me their number in case I need to call them again.

When I get home, I have to retrieve my independence from wherever I put it while I was being compliant in hospital. It is hard. I go back to work and nobody praises me for how improved my mental state is. Instead my colleagues are polite – it’s work. I don’t talk to them about personal stuff – you don’t do that at work. When I go home at night, my house is empty and scary and I’ve let go of my control and independence. I am sure that I am unable to look after my self. As soon as symptoms of my illness return I feel that – even though I hate the place – the only option is to go to hospital. Of course this just compounds the issue. And some of the staff don’t seem to be all that helpful. Here are some of the ‘helpful’ things that I have been advised when in hospital:

  • “You should go on the pension. Your job’s too stressful”  – from at least six professionals over different admissions
  • “You must have brought drugs back from your leave. I’m searching your room” – nurse
  • “Your mum is your primary invalidator. That’s why you have borderline personality disorder’ – nurse. And WTF??
    “That lady assaulted you because you’re annoying. Stop being annoying and she’ll leave you alone” – nurse
  • “You don’t have Asperger’s. You’re too cool to have that” – nurse
  • “No, you were great. I learned that patients have rights when I met you” – allied health worker with over 20 years’ experience in mental health.

I should note that there is value in psychiatric hospital for some people. It can be a good place for someone having a first episode of illness to get assistance and possibly a diagnosis. It can be of assistance to people who really are unable to manage or take care of themselves due to their illness. For me, I am better off with my live in psychiatrist of the black cat variety. Since I’ve had him I have not been admitted to hospital. He is a strong protective factor.

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Tackling bullying and knowing the value of difference

When I was 11, I started high school. I had attended a primary school with about 30 kids. It was all a little hippie trippy and mostly kids were civil to one another. High school was very, very different. From pretty much my first day, I was told by almost every kid – even those in higher year levels – that I was either one of or a combination of the following:  weird, swotty, crazy, stupid, ugly, fugly, teacher’s pet, four eyes. I started to feel excluded from the first time in my life. It continued throughout high school. By the time I left school, I thought different was a bad thing and that being like the crowd was best. I hated myself for being unable to fit in with others. All the insults, violent acts and  humiliation took it’s toll. I spent the next 10 or 15 years denying my unique qualities and  doing everything I could to be what I thought was ‘normal.’

Fast forward 25 years. I am now a proud Autistic woman. I value my ‘difference’ and the ‘difference’ in others. People who tell me I could ‘pass for normal’ – and yes, some people actually are stupid enough to say that to an Autism self-advocate – do not get off lightly. I like my difference from whatever the arbitrary ‘norm’ might be. And I recognise that a lot of the innovation and breakthroughs in our world – in things like science, medicine, literature, art, mathematics and so forth, are devised or driven by people who probably had a similar experience to me at school.

The thing that makes me sad is that people who are intelligent or quirky often suffer at the hands of bullies and thugs in high school and sometimes even in the workplace as adults. I know what kind of a toll that takes on young people’s self esteem and confidence. I have overcome my negative self-image and realised that school bullies’ view of me were probably somewhat biased and didn’t reflect the reality that I was a beautiful, creative, intelligent, sensitive young woman. However, how many people are out there who have had their spark squashed by abuse? How many people are no longer with us because they simply could’t take the struggle any more? How many people who have something amazing to contribute to the world don;t do it because they’re afraid it will be ridiculed?

When I was a child, there was a rhyme which was popular with primary school teachers: ‘Sticks and stones will break your bones but names will never hurt you.’ Apologies to my teachers, but that is utter crap.  We need to send a message that bullying is never OK and that difference is a wonderful and valuable thing. I know things are improving – albeit in a rather incremental manner – but kids at school need to be encouraged and empowered to value their difference and their peers taught that there is no ‘norm’ – people are not weird, but should be valued for their own perspective and understanding.

When I speak to young people on the Autism spectrum who are having a difficult time at school, I often tell them ‘It will be OK. I wasn’t popular in school. Most of the really cool adults weren’t popular at school.’ It would be nice to bypass this step and just have kids on the spectrum built up and empowered when they are at school rather than having to wait until they’ve worked  through years of trauma

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Try not to cut down the tall poppies

Most people would conclude that I am quite a successful person. I have written and contributed to a number of books, I do a lot of public speaking, I have been on national television talking about Autism and I have something of a profile in the Autism world. The funny thing is that I don’t feel particularly different to how I felt before I was apparently successful. I am insecure, I have mental health issues and I get just as anxious about change or new situations as anyone does. People are still rude to me and now I have an extra issue to contend with – the insecurity of others.

There is a lot of poor behaviour which centres around people feeling threatened and intimidated by others’ success. Some people are competitive and become jealous. This can lead to them not quite seeing successful people as human. They become the butt of jokes, the target for cruel and thoughtless comments. How do I know this? Because I used to be insecure and jealous.  I said cruel things about notable people and really didn’t see them as being people at all.  I saw the success of another person as a personal affront. It was as if I believed that there was a limited pool of success to draw from and if somebody else had some, it made it impossible for me to be successful.

If I enjoyed any success I would denigrate it by thinking ‘well, I’m not as successful as X person, so mine is insignificant’. I even had a university lecturer comment on how good I was at downplaying my achievements – ‘Oh, but it’s only a coursework Masters degree’ etc. Sadly I did not outgrow my tall poppy syndrome until i had written two books and given a talk for TEDx Canberra.  I was not hit with some epiphany of wisdom and realisation, I just started to view myself as successful and as such others were no longer a threat.

Here’s some thoughts on insecurity and tall poppy syndrome

  • There is not a limited pool of success. Others are not detracting from your achievements by achieving things themselves.
  • Competition is an artificial construct which if anything will make you more frustrated and stressed. See others in your field as colleagues rather than competitors.
  • In the Autism world, we should really all be working for a similar outcome. If another person writes a good book that helps people, be happy for them because they have helped people.
  • Working cooperatively with other people benefits you and them. You can develop relationships of mutual assistance where you support them to achieve things and they do likewise.
  • Successful people often have similar struggles and challenges to everyone else. success is not a guarantee of happiness and can in fact cause issues and stress.
  • Remind yourself that successful people are human too and have feelings. Lots of them read their press, so they may see hurtful or cruel comments people make about them on social media etc.
  • If you mentor someone and they succeed that is a great thing – not a challenge to you but a compliment to your work as a mentor.

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Me signing something…

 

Querying the function of functioning labels

As an Asperperson with a good job, a bunch of achievements and a couple of books, I get it all the time. I’m sure you’ve heard this or similar said about either yourself or someone you know. It’s very common and very fraught. It is the functioning label. ‘Oh Jeanette’, they will say ‘but you’re very high functioning.’  This is a dangerous statement for a  number of reasons which I’ve listed here:

  • Function is a subjective label. Who is to say whether I am high functioning, low functioning or not functioning at all? It doesn’t really describe a quantifiable state.
  • The idea of functioning is premised on a ‘norm’ and almost always a neurotypical norm at that. The more a person deviates from this apparent and arbitrary norm, the lower their level of functioning. I don’t like the idea of basing an assessment of someone’s capabilities in this manner.
  • People who are often put in the ‘low functioning’ group tend to be people who don’t speak. The assumption around people who do not speak is that they must have a severe intellectual disability. This is frequently not true. People with Autism who started speaking at older ages often state that they knew everything that was going on all the time. So who’s to say that speech is the holy grail of function? I was lucky enough to know Anne MacDonald. She did not have Autism but she had cerebral palsy. For those not familiar with the story, Anne was kept in a children’s home for children who were apparently severely affected by intellectual disability and who had no way of interacting with the wider world. This place was a hellhole and many of the young people and children there were just as intelligent as you or i but had no speech. Anne went on to earn a double degree, co-write a book and ‘speak’ all over the world (with the aid of communication technology). She won the Disability Day award in 2009. She was an absolute luminary in the disability world and she never uttered a word. The whole idea that speaking and intellect are inexorably linked is very problematic. Here’s a link to Annie’s book, ‘Annie’s Coming Out’: http://www.amazon.com/Annies-Coming-Out-Rosemary-Crossley/dp/0140056882/ref=sr_1_2?ie=UTF8&qid=1414904158&sr=8-2&keywords=Annie%27s+coming+out
  • People can change over their lifetime. To slap a functioning label on a child may be dooming them to a life of underachieving and being given inappropriate services and support.
  • Finally, what does functioning actually mean? I have always been described as a ‘high functioning Autistic person’ by clinicians. However, I spent five years in intense distress, being extremely suicidal, being imprisoned and an involuntary patient in the psych ward, feeling so awful that at one point, I asked a doctor to give me a lobotomy. Is that high functioning?

These labels are not helpful as far as I am concerned. I never use them myself when talking about myself or other people on the Autism spectrum. I think the medical profession can do a bit better than this as it does not serve much of a practical purpose for people on the spectrum.

Instead of talking about their level of functioning, how about we describe people based on their individual characteristics; their strengths, weaknesses, loves, foibles, issues and passions, rather than giving them an inappropriate and outdated functioning label.

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The agenda around gender in Autism

I am an Autistic woman.  I was diagnosed with Asperger syndrome in 1994, a time when few people outside of a select group of mental health professionals knew anything about the more ‘Aspie’ part of the Autism spectrum.

When I got my diagnosis, I was told that being a woman with Autism was really rare. Most people on the Autism spectrum were boys. They lacked empathy, they did’t understand nonverbal cues, they couldn’t hold conversations, they were kind of flawed geniuses and liked maths and physics. Oh, and they all liked trains apparently, or trams and buses if they were a bit atypical. Of all these attributes, none of them involved people with Asperger’s being girls. Girls on the spectrum were – according to psychiatric wisdom – an anomaly. So I was an anomaly amongst anomalies and nobody knew anything about how to make my life better. I didn’t take this news very well.

As I progressed through life in a somewhat haphazard manner, I developed a mental illness. I found myself in a hospital in country Victoria. The chief psychiatrist told my parents that I couldn’t have Autism as I was sensitive, and didn’t like maths or trains and most of all, I didn’t fit the limited number of Aspies this man had treated, all of whom were boys. I gained a diagnosis of Borderline Personality Disorder – apparently a very common misdiagnosis for Asperwomen, and spent the next few years being told how dysregulated my emotions were and what a nasty manipulative little attention-seeking borderline I was. Not nice.

Eventually, I came to terms with my Asperger’s diagnosis. I saw a psychiatrist who specialised in treating people on the Autism spectrum. I got in touch with Autism Victoria (now known as Amaze) and borrowed books and videos from their library. I came across author and advocate Wenn Lawson. authors Donna Williams and Liane Holliday-Willey and of course the amazing Temple Grandin. Apparently I was in good company. I made a valiant attempt to join the ranks of notable Auties by writing an autobiography, but I still hadn’t met a lot of women on the spectrum. I had the occasional twinge of doubt that maybe to be Autistic I needed to like maths or trains or something.

A couple of years later I was asked to speak at a conference about women and girls on the Autism spectrum. The first day was your standard Autism conference: A bunch of speakers – including me – standing up and talking about what we were experts in to a group of mostly clinicians with a smattering of Autistic people. But the second day of the conference was for women on the spectrum only. I was in a huge room filled with other spectrumites…girl spectrumites at that. I have not doubted my membership of the Autism club ever since. I felt like I was in a room full of people just like me. It was wonderful!

I now belong to a sort of network of Autistic women – there’s quite a few of us. We’re all advocates and we work to raise awareness of Autism among women. I have discovered that women on the Autism spectrum are generally a little bit different to our brothers in the Autie club. There are still issues for some of us in regard to getting a diagnosis or even if we have one, of getting professionals to understand out Aspiness is there, albeit in a female sense. Things have certainly improved since my days in the 1990s with nobody believing a sensitive, literary, artsy girl could be on the spectrum, but there is still a ways to go.

I am involved with a great advocacy organisation called Autism Women Matter which works on these sorts of things. Here’s their website: http://www.autismwomenmatter.com  – check it out. It’s good. My friend Tania Marshall has also written a great book on girls and Autism called ‘I am ASpiengirl’ –www.aspiengirl.com – which I strongly recommend.

Being an Asperwoman is a huge part of my identity thee days. I’m so glad I never listened to the Dr Doubtfuls and instead sought out a world where I fit in. I really hope that others can find the same sense of belonging and inclusion as I have.

 

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Jeanette hard at work doing some advocacy (and loving it)