Autistic author, advocate, presenter and mentor Jeanette Purkis describes the journey she went on after being told she was a nerd.

IF YOU TAKE your metaphorical time machine back to Melbourne, Australia in 1994 you might see a much younger me being told by a clinical psychologist that I have something called Asperger Syndrome.

I didn’t properly know what that meant. Few people did in 1994. My understanding was that it was a diagnosis of ‘nerd.’

To me, the diagnosis meant that I would always be a nerd and never be accepted by anyone for the rest of my life. Understandably, I wasn’t overly keen to embrace my newfound neurodiversity!

Those diagnosed as adults these days often have a different view to the one I took. The diagnosis is often seen as a liberation.

People find their ‘tribe’ and understand things about themselves that they haven’t articulated before. Finding out they are autistic is a great thing for so many people.

So what drove my inability to accept that vital part of who I am?

A hard road

Jeanette Purkis

I spent most of my school years being subjected to bullying, violence and abuse.

This would start from when I got on the school bus and continued pretty much unabated throughout the day and then I had it again on the bus home.

Thankfully we didn’t have Facebook in the 1980s because I would doubtless have been cyber-bullied at home too if we did! I was a kind child and never hated or blamed the bullies. Instead, I was terrified of them and internalised all the hatred they gave me. For surely if so many people hated me that much, I must be fundamentally unlikeable?

I was always academic at school, and was considered gifted. I wanted to talk to the teachers and came top of the year every year in all of the non-physical education subjects. The most common insults I received related to my divergent gender and to my nerdiness.

Desperate to be accepted, I joined a socialist group at the age of 15. As a socialist all I had to do was agree with the views of the party and I was accepted. I spent the next few years doing everything I could to distance myself from the studious person I was at school who earned the ‘nerd’ tag which I hated so much.

My negative focus to life and self-hatred resulted in some very destructive acts and a relationship with a person who was a dangerous criminal when I was 20. I spent from 1994 to 1999 involved in drugs and crime and ‘masking’ very convincingly indeed, fooling even myself that I was a scary criminal!

‘New millennium = a new life’

Things changed in 2000. I decided the new millennium would equal a new life for me. I changed my focus from negative to positive. This involved enrolling in university, intending to get a degree so I could get a professional job one day.

At the end of my first year at university I got very unwell with mental health issues.

In the past this would have resulted in me committing some crime and going to jail but this time was different. This time I accepted help and reminded myself of the friends I had made at university and my aspirations for a better life.

I had a new feeling: hope and self-respect. Very soon after this change I started to wonder about the autism diagnosis I had received some years previously. I asked my mum to send me the diagnostic report. I read it and it made sense. I joined the local autism organisation and borrowed books and videos about autism.

While I did accept my autism, I was still quite uncomfortable about discussing it.

I found it easier to tell people that I had been in prison than that I was autistic! To me it was like a shameful secret and if I told people I expected them to stop being my friend.

Autistic peers, a mentor and a book

This all changed in 2004 when I was invited to do a course alongside 20 other autistic adults so that we could give presentations about autism at schools.

I had never been in a room full of autistic people before.

It was an amazing experience and quite overwhelming to be among so many others. I discovered we were all quite different but quite similar too.

Donna Williams

The most incredible thing I could have imagined happened as part of that course – something which altered the course of my life in a very positive way. I met my first autism world mentor and someone who I have endless respect for, Donna Williams (who was also known as Polly Samuel).

Donna was the first actually famous autistic person I had met. She had written nine books and was renowned around the world as a commentator and advocate around autism. We became close quite quickly and after I told her about my own story she encouraged me to write an autobiography. I didn’t think anyone would be interested in my life story but Donna sent it off to her publisher along with a foreword she had written and they said ‘yes’.

I was so excited to be an author that I almost forgot how uncomfortable I was being ‘out’ as autistic. I had media appearances and got asked to speak at autism events.

People wanted to know my opinion as an autistic person. It was terrifying and wonderful.

It took me a few more years to completely respect myself as who I am and feel I belonged in the neurodiverse community.

This momentous realisation happened at a conference for autistic women and girls that I attended in 2009. When I was in a room with 100 autistic women I finally felt that I had found my tribe. It just felt so good. I didn’t have to hate myself or hide my ‘nerd’. I could be who I am and that was a great and valuable thing. Being me was OK. In fact it was beyond OK. Being me was golden.

Proud of my pride

These days I can and do talk to everyone who is interested about autism and my work as an advocate.

If anyone has an issue with my being autistic then that is most definitely their issue, not mine.

I willingly say I am king of the geeks and that this is a good thing. This is the culmination of a very long and difficult journey which has ended in self-acceptance, respect and pride.

My difficulty in accepting my autism was so closely bound up in my self-loathing of the past. The more I understood and liked myself, the more able I became to embrace my neurodiversity.

I love seeing people these days – adults and kids – seemingly effortlessly finding that space of pride soon after or at the time of their diagnosis. I think maybe the experience I had of huge challenges in being able to love and accept myself is of value to others who are struggling with acceptance.

For many people it isn’t as simple as ‘find your tribe’ and that is actually okay. I think sometimes people feel afraid to express publicly that they are having difficulties in accepting themselves as autistic and I know this so well.

People are at where they are at and there doesn’t need to be a judgement in that space, just support and understanding.

On a personal note, I do love my place of autistic pride. I worked very hard to get here and it is very ‘real.’ I’m proud of my pride!

• Jeanette Purkis is an autistic author, advocate, presenter and mentor, and the 2016 Australian Capital Territory Volunteer of the Year
• www.jeanettepurkis.com
• This article appeared in Altogether Autism Journal, Issue 3 2018