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Jeanette Purkis On Autism Advocacy and Adversity as Teachable Moments

Hi, I’m Nick McAllister, and in the lead up to the up-coming 2017 Autism West Symposium in November, I had the pleasure of interviewing one of the key note speakers – Jeanette Purkis.

Jeanette Purkis is an author, public speaker and autism advocate who has a diagnosis of Asperger syndrome and atypical schizophrenia. She has written 3 books and hosts an internet radio show, as well as all that she also facilitates a support group for women on the autism spectrum.

Jeanette Purkis, Autism Advocate

Welcome Jeanette, and thank you for giving up your time on this cold Sunday morning!

So I’d like to start by saying that you seem to have had some really interesting life experiences and challenges, for example at the age of just 20 you unfortunately went to jail.

Can you describe that time in your life? And how did you cope with being Autistic and being in jail?

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.

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 got caught I was relieved. I thought, good, there’s going to be a consequence, I’m not going to burn in hell.

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 an 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 became very aggressive. It was like autistic meltdowns: I had this perfect storm of horrible brain things, and all these bad things were 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.

Can you describe what it was like growing up as a young Autistic child and then facing the challenges of going to school?

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. I had a lack of self-worth and a lack of value in who I was. Often, I describe it to myself as similar to Stockholm syndrome with bullies. I wanted to fail. I wanted bad things to happen to me, and so I actively sought out negative consequences, including getting into trouble with the law.

What are some things that non Autistic people need to understand about what it’s like inside the autism world?

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.

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 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.

…I think the most important thing is setting yourself little challenges.

After all those challenges that happened in your life, how did you got your life back on track? And was there anything significant that helped?

I got a job when I was in my first year of university, 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. 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.

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.

Can you offer some advice for parents of autistic children?

I think one of the things I would say is just remember: like all kids, autistic kids are kids, 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.

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.

Do you think that attitudes towards autism have changed in the last 10 years?

Yes. Because almost everyone – whether they identify as part of our community or not – has had some exposure to ideas around Autism – media articles, family members or friends on the spectrum, seeing Autistic celebrities or even TV characters like Sheldon Cooper in the Big Bang Theory.

Jeanette Purkis

In the actual Autism community there are a bunch of passionate activists and advocates.

I like to imagine I’m somewhere within their number. I think we’ve developed a ‘patchwork’ sort of world in relation to Autism. Although in my 22 years as being a diagnosed Autistic woman things have improved. There is still a very strong whiff of tokenism and disrespect in some organisations which are meant to be assisting us but don’t seem to want us to be at the table making decisions. And decisions on Autistic people really should have Autistic people largely involved – and listened to – in the decision-making process. So we are definitely not there yet, but I am beginning to get some idea of what ‘there’ looks like.

The 2017 Autism West Symposium will take place on the 3rd & 4th November at the Esplanade Hotel, Fremantle. Tickets are selling fast so don’t miss out – grab yours by clicking here.

About Nick McAllister:

Nick McAllister lives in Burns Beach, is a screenwriter, blogger, ABC open contributor and also attends the Saturday writing group at the Peter Cowan Writer’s centre. He is also facilitating two of the digital media workshops run by Autism West on Thursdays and Fridays.