In denial – coming to terms with diagnoses and embracing who you are

I was first diagnosed as autistic in 1994 and with schizophrenia in 1995. It took me seven years to accept my autism and between 15 and 26 years to accept my schizophrenia, depending on how you define acceptance! 

I was 20 when I was diagnosed as autistic. At the time I was in prison (see me autobiography, Finding a Different Kind of Normal, for detail!). I was masking and was so good at it I believed myself to be a big tough criminal and drug user (rather than the scared autistic  kid trying desperately to be accepted by my peers that I actually was!). When I was given the diagnosis I thought a number of things. The first was that it was my middle class p[parents  trying to make excuses for my criminal behaviour. I also thought it was a diagnosis of ‘nerd’ and that it justified what the bullies told me at school. Needless to say I really didn’t want my autism diagnosis! 

Over the next few years any mention of autism would stress me out. The reason for this I think was that deep down I knew the diagnosis was correct but I had such a negative view of myself that anything deeply meaningful about my character was disturbing to me. I remember one time when I was in psychiatric hospital there was an autistic kid – probably about 16 years old. I absolutely hated this kid and I remember being aware that what disturbed me most about him was the similarities I saw between him and me. Now if I meet someone who reminds me of me I am delighted because I actually like myself.

Even when I finally accepted I was autistic in 2001 I didn’t particularly like the idea. I was more anxious telling people I was autistic than telling them I had been in jail. I saw it as a shameful fact about me. It took me another four years to start embracing my neurodiversity and that was only because I wrote an autobiography focussing on my autism which was published, thrusting me into the world of advocacy somewhat reluctantly.

After my first book came out and through knowing my mentor and friend Polly Samuel I finally owned my autistic identity and felt proud to be autistic but it was a long journey.

The path to accepting my schizophrenia was an even longer one than that for my autism. I had my first psychotic episode in 1995 after a long period fo heavy substance abuse. I was given the diagnosis by a hospital doctor but I dismissed it. I had met people with schizophrenia and they were not like me. Every competent psychiatrist I have ever seen has confirmed the schizophrenia diagnosis but I still failed to accept it on multiple occasions. I have been prescribed anti-psychotic medication for 26 years and I now know that doctors do not prescribe these meds unless they are pretty certain that you have a psychotic illness but I still doubted and denied that diagnosis.

I came to accept it in 2010. I had moved to Canberra from Melbourne to take up a job as a public servant in 2007.  While I had lived in Melbourne I always had a psychiatrist to prescribe my meds but when I moved to Canberra I did not see one and only had a GP who prescribed my meds. The reason for this was I had been well for a long time and figured I didn’t need a psychiatrist. I also thought public servants don’t have a psychotic illness! Sadly this view is pretty prevalent amongst other people too despite being totally wrong – as I am living proof of. I have been a public servant continuously for almost 15 years and love my job.

In 2010 I became unwell with psychosis but it took me a long time to get help. Not having a psychiatrist turned out to be very problematic. I had no support for my mental health other than calling Lifeline. After a lot of misery and scariness I ended up in hospital. The hospital psychiatrist confirmed my diagnosis and for once I accepted it. Once again it took me a further few years to accept it properly and embrace it but I made that first step.

I now know I have schizophrenia and that I need the meds – I Definitely need the meds!! I am glad I accept the diagnosis as it makes it a lot easier to manage and helps me to understand myself better.

I come across a lot of autistic people in my work as an advocate who struggle to accept their diagnosis and for whom autistic pride is not really a ‘thing.’ Sometimes these people are apologetic about this as if there is a ‘correct’ way to approach your diagnosis. There is no ‘correct’ way. Of course I am all for people embracing it and feeling proud to be autistic but it is not a failing not to! I am a very visible autistic advocate  and I couldn’t even watch a documentary on autism for many years without feeling filled with self-loathing. Thankfully I moved on from there to where I am now – an extremely out loud and proud autistic person who likes and values myself just as I am. Life is full of journeys and how you feel about your diagnosis can often be a difficult journey. We live in a world which has a lot of ableism and stigma around differences and mental health and neurotypes. It is totally understandable that people will not immediately see their neurodiversity or mental illness in a positive or accepting light. The solution to this is not to hector people into accepting their differences before they are ready to but to create a world which respects difference and supports people to be proud of who they are and accept themselves.  

4 thoughts on “In denial – coming to terms with diagnoses and embracing who you are

  1. Dear Yenn, i was only diagnosed 3 years ago at the age of 67. so i acknowledge my complete ignorance about your life path. i am in awe at the reillience of the human spirit, in particular the strength of your human spirit. and the courage it takes to talk about diffucult issues. i am reminded how important it is that we continue sharing our journeys, as well all learn and grow from sharing. i am a survivor of intergenerational domestic abuse – another difficult cultural issue which attracts negative stereotypes. Morgan

    Liked by 1 person

  2. I’ve stopped using the word “diagnosis” in relation to autism. It makes as much sense to me as the wife being diagnosed as Japanese or my grandchildren being diagnosed as Māori. It’s an integral part of their being. I was informed that I was autistic when I was sixty years old, and I refused to accept for some years. It was only when I stopped reading about it from a medical/pathological perspective and started reading articles by actually autistic individuals that I learnt to embrace being the real me.

    Liked by 2 people

  3. Lovely and honest and much is reflected here.
    I’ve been a so called public servant I think anyway. Healthcare and social care 25 years for everyone from sensory to autism to physical and challenging I’ve seen lots
    But not everything. I’ve hated them and myself and denied and not known. I hold lots of guilt for being horrible at times but now realise no one helped me. It’s a little better today only a little. I’m still lost. Thank you


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