Jeanette Purkis on autism and empowerment

When Jeanette Purkis was first diagnosed with autism two decades ago, the condition was stigmatised, and poorly understood. From prison to parenthood, she shares her story of surviving, thriving, and learning to accept herself.

As a child, I was very odd. Everyone would say to my mum, 'What's she doing now?' because I was a very energetic child and I was quite naughty, very determined.

When I went to high school, things got very bad. People hated me. People really bullied me and I was the least popular child.

People will say things like, 'Oh, but you don't have empathy,' and we're like, 'Well, actually we do but we do it differently.'

I had a lack of self-worth and a lack of value in who I was. Often, I describe it to myself as being like Stockholm syndrome with bullies.

I wanted to fail, I wanted bad things to happen to me, and I actively sought out negative consequences, including getting into trouble with the law.

When trouble happens

When I was 20, I met an older man who was one of those evil people. He was a very scary guy and he was a psychopath, but I didn't see that.

Autistic people tend to be very trusting—especially young autistic people—and I thought he was just naughty like me, graffiti and stuff. But he was another magnitude of nasty.

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By the time I worked that out, it was way too late. I got so involved with him and what he was doing that I knew if I left him he would kill me.

I ended up doing horrible things with him; robbing people and stealing cars, things I feel terrible about every day. I hate that about myself. I hated who I was. When I actually got caught I was relieved. I thought, good, there's going to be a consequence, I'm not going to burn in hell.

Read more: Why is autism underdiagnosed in girls?

After I was released from prison, I identified with that horrible world. I was very damaged emotionally—it's a very frightening place. Your life is in danger every day, and I'm anxious person anyway. I self-medicated, mostly by smoking marijuana. Through that I got really unwell with mental health issues.

I ended up in hospital, and I just became very aggressive. It was like autistic meltdowns: I had this perfect storm of horrible brain things, and all these bad things happening.

I got stuck in that institutional world of going into the psych ward and prison and forensic psych ward for another three years.

I was diagnosed when I was 20, and I just thought: I don't have this Asperger's thing. But when I looked back, I knew deep down that it was right and I was fighting it myself because accepting it was an act of accepting myself, which I couldn't do at the time.

Attitudes towards autism

The most-known difficulties that people experience around autism are difficulties around social communication, non-verbal cues, things like that.

We are often seen to be quite rigid, and find change and adaptation rather difficult. I tend to think that a lot of the difficulty does not actually come specifically from autism but from an almost cultural disconnect between the autistic people and the non-autistic people.

People will say things like, 'Oh, but you don't have empathy,' and we're like, 'Well, actually we do but we do it differently.' Those misunderstandings can make life very difficult.

Jeanette Purkis speaking at TEDx Canberra

IMAGE: JEANETTE PURKIS SPEAKING AT TEDX CANBERRA (PAUL HAGON)

 

The first 25 years of my life, everything that could go wrong went wrong. Lots of that was my own doing, I definitely accept that. But I wasn't resilient, and I gradually built it.

One thing I am is very able to learn from adversity. Adversity is a teachable moment, and I advocate that for young people on the spectrum now.

Autistic people, the odds are stacked against us. We tend to be negatively focused, for a number of reasons. We tend to lack or we have difficulties with self-awareness and the ability to reflect on ourselves and be an objective observer. I struggle with that.

But you can work with what you've got with this stuff, and I think the most important thing is setting yourself little challenges.

Getting back on track

I got a job when I was in first-year uni, 2001. I thought, I must get a job, this is important. I got this dishwashing job a couple of nights a week in a restaurant.

I had enough money, I didn't need the job, but I was determined to make it work. But it didn't work. I was so anxious about it. I hadn't worked in years.

I thought it was like being a brain surgeon: if I made a mistake, if a plate went back dirty, the whole business would stop working or someone would die. Huge perfectionism.

Read more: The journey towards understanding autism

I ended up really unwell with mental health issues and had to go to hospital. It could have been very dangerous.

But I looked at that and I thought, well, OK, so I can't work now but I can work in the future. A few years later I applied for a professional full-time role, and I've been doing it for the last nine years.

Just thinking realistically about what you can do—but just challenging yourself a little bit—all those things working together can actually build resilience, and through it, that sense of independence as well.

Her advice for parents of autistic children

I think one of the things I would say is just remember: like all kids, autistic kids arekids, they will grow up to be adults. We mature and grow.

If you are really at your wits' end and life is really difficult with your kid, then try to just step outside of that and say, well, this is hard, we will do what we can, but things will change.

There's a lot of stuff out there saying autism is a tragedy and you've lost your child. That stuff is very insulting to autistic people.

I know so many autistic people—not just adults, but teenagers and kids as well, who are amazing and have heaps to offer the world.

A child is a blessing, even if they are difficult. Remember: autism is not necessarily a deficit, it's a difference. Just be kind to people, just give people time, listen.

Don't assume. Listen and ask. I think for any human interaction, that's really important.

 

 

This is an edited extract of an interview that first aired on All in the Mind. You can subscribe to the podcast on iTunesABC Radio or your favourite podcasting app.

from http://www.abc.net.au/radionational/prog...