Why I talk about Autism and resilience so much

In 2012 I met a young autistic man. We will call him Adam. Anyone who has been to one of my talks on employment, education or resilience  will probably have heard this story. When I told Adam I am autistic, work full-time in Government administration and – at that point – had one published book he said ‘You’re lying. That isn’t possible.’ I was keen to defend my integrity but then realised that in Adam’s world at least, an Autistic person couldn’t do those things. Adam and his parents had been given a deficits-based view and it was clear Adam had not been allowed to undertake all that many things which challenged him. At 21 he had a year nine education and had not engaged in any study in the preceding six years. He had gone onto the disability pension as soon as he was eligible, at the age of sixteen. I saw Adam and felt for him. I thought that he had been done a big disservice by all the deficits thinking, the fear that if something was hard he would be upset or have a meltdown which must be avoided at all cost. It was almost as of the things which had bee done with the intention of caring for him and making his life more pleasant as a child had in fact backfired. At the time met Adam I had always believed that an early autism diagnosis was a positive thing, helping autistic young people know their identity and get the supports they needed to navigate the world. But the world Adam navigated was his bedroom and the virtual worlds in online games. I do not criticise Adam and I know that life is complicated and people can struggle to engage with the world for a number of reasons. All I knew was that I wanted to help create a world which autistic young people could be proud of who they are and take on and overcome the challenges they need to engage in life in the best way for them. At that moment of realisation my work in advocacy began in earnest.

I interpreted the main issues Adam  was facing as a lack of being allowed to take on challenges and risks and to be supported through those. The primary issue in my mind was that lack of capacity for resilience was holding people like Adam back. This became a big motivator for me and still is what drives my passion. My Wonderful World of Work book was written as a direct means of addressing the issue I saw around resilience and autism.

Resilience to me is about being able to take on challenges, work through them and come out the other side with confidence an mastery. and that confidence and mastery can translate across and into other challenges and areas of life. This is not a quick process and it does not stand alone. Things like self-esteem, confidence and independence  are all related to resilience.

One thing to clear up about resilience though. When someone tells me that – usually an educator – has told them that their autistic child will not be bullied if they ‘get some resilience’ it makes my blood boil. The person saying that is not speaking about resilience or anything close to it. What they are doing is dismissing and invaliding that child’s experience, They are blaming the victim. No matter how a child became a bully, the victim of that bully’s poor behaviour is not responsible for the bullying behaviour in any way. That is NOT resilience.

Genuine resilience has a range of benefits to autistic children and adults.

I am interested in this for a number of reasons in addition to Adam. One of them is that I used a process of controlled challenges to build my own capacity to work after being outside the labour force for almost ten years in my early adult life. I didn’t articulate or understand that I was ‘doing resilience’ and it was quite intuitive – it just  seemed like a good approach at the time! I went from having a severe experience of perfectionism at a dishwashing job resulting in mental health issues requiring hospital. My issue was the perceived level of responsibility at work. Even though the worst mistake I could make in the dishwashing job would probably be to send a dirty fork out, in my mind if I screwed up the whole business would go broke. At the time this happened I didn’t for one moment think I would never be able to work, despite that seeming the likely outcome or my problematic work history, Instead I thought ‘I can’t work now, at this moment in time’. In the next five years I built my work resilience  by working as a volunteer in a gallery, building confidence from that to having a very small business doing video editing for my art school colleagues, building confidence from that to work in a charity and then after six months of that and the publication of my first book moving on to a full-time professional role. I had built my resilience  for work from being terrified of the tiniest amount of responsibility to working in a corporate role with lots of responsibility. I have been in my corporate workplace for almost eleven years now and  have even more responsibility at work and in my advocacy work too. I rarely think about the responsibly, just do what I need to do.

This should be seen in the context of challenges faced by Autistic people in completing study and finding work. This example shows me managing my individual issues with work though resilience. However there are also broader social issues and disadvantage which me getting a job didn’t and couldn’t overcome. Addressing these issues does require a broader approach than expecting individual Autistic people to work through their individual challenges.

And there is a bit of an ulterior motive for this post. (Cue shameless book plug!) My friend, colleague and co-author Dr Emma Goodall and I have a book for parents to support their autistic kids aged 2-10 to build resilience which is coming out next week. It is one of two, with a book for parents of kids and young people aged 11-20 years expected next year. The books are really practical and written from a strengths-based perspective. Their focus is on understanding and supporting autistic kids to navigate the world and become fulfilled adults reaching their own potential, whatever that may mean for them.  Here is a link. I think you can preorder if you are keen: http://www.jkp.com/aus/the-practical-guide-to-resilience-for-parents-of-children-on-the-autism-spectrum-book-1-2.html

And here is one of the best talks I ever did which thankfully was filmed and put on YouTube – my 2013 talk for TEDx Canberra. Please excuse the use of terms like ‘ASD’ and ‘Disorder.’ Things have changed a lot in the Autistic Pride movement since then., Despite the dated terminology it is a good talk.  https://www.youtube.com/watch?v=pqdGb4TraFk&t=7s

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This is me speaking at TEDx Canberra

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One thought on “Why I talk about Autism and resilience so much

  1. I really love this post, initially I was going to say I’ll save it somewhere as it’s something, as a mother of an autistic son, I want to refer back to again and again – but actually I think I’ll just buy your book instead! This is such an important message, there are so many points I’d like to make but then this comment would end up the size of a blog post in its own right, so I’ll just say I agree with you wholeheartedly on this.

    I’ll be reading with great interest from my own point of view also, I’m on an assessment waiting list at the moment, one of my main coping mechanisms my whole life has been to retreat from the world and just live in a fantasy world – and while it has helped me cope I strongly feel I never developed my own resilience as a result – something which has really limited my potential. So I’ll be making notes for myself too, hopefully it’s never too late to start.

    Thank you for writing this, on behalf of me and my son

    Liked by 1 person

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