'My son is autistic. I don't want him to change – but the world needs to.'

Anyone at any time can become a carer to a family member or friend. I became a carer when my eldest child was diagnosed with autism at age seven.

I am a proud mother to four young children (including triplets!) and a member of the LGBTIQA+ community. I’m also a lawyer at Your Story Disability Legal Support (Your Story), a free national legal service supporting people to safely share their stories and ideas for change with the Disability Royal Commission.

Walking on his tiptoes, fussiness with food, and an aversion to noises were the first signs my son was not neurotypical. For him I think the diagnosis came as a relief because he knew he was different. As a parent, I felt sad, surprised, and uncertain about what the future looked like.

We’ve come a long way since then but being a carer can still be challenging. It has its ups and downs. It’s an extra layer on top of being a parent.

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With an estimated 2.65 million Australians providing unpaid care and support to a family member or friend, carers make a huge contribution to our communities. They also have a unique perspective to offer the Disability Royal Commission, which is investigating the mistreatment of people with disability in all contexts and settings.

To date, my family’s experience has been largely positive. My son, now nine, was diagnosed relatively quickly and received NDIS funding fairly easily. He has a fantastic team behind him – a supportive family, a great school, and a great disability support provider. I know from both my professional life and my personal life that not everyone is as fortunate as we have been.

In different roles, as a lawyer and a disability advocate, I know that children with disabilities can have a hard time on multiple fronts – getting diagnosed correctly, quickly and affordably, and getting the support they need at school. I know the toll this can take on children and their parents and the parents’ own aspirations, careers, and relationships.

Michelle’s son, David Markovic-Bowler, was diagnosed with autism when he was seven years old. Image: Supplied.

Knowing about other people’s negative experiences does have an impact on me as a carer. It makes me feel like things will eventually go wrong for my son at school despite how positive things have been so far. I sometimes feel like I am holding my breath and waiting for things to go wrong. I worry more about my son and his future than I worry about my other children. I question my judgement and parenting more when making decisions about my son too.

Statistically, my son is more likely to be unemployed, more likely to come into contact with the criminal justice system and more likely to experience mental health issues such as anxiety and depression. This is heart breaking.

My hopes for my son are the same as for my other children – that he isn't bullied or lonely at school, that he is able to finish school and get a job and that he is happy and has a good life, whatever that means to him. But I feel like in many ways the odds are against him.

I hope that through the Disability Royal Commission, this will change.

Established in April 2019, the Royal Commission is investigating how to prevent and better protect people with disability from violence, abuse, neglect and exploitation, and achieve best practice in reporting, investigating and responding to this. It’s also looking at ways to promote a more inclusive society that supports people with disability, like my son, to be independent and live free from all forms of mistreatment.

The Royal Commission is taking submissions until 31 December and wants to hear stories from people with disability, as well as their families, friends, carers, advocates, and supporters. It’s also interested in people’s ideas for change, which will ultimately inform its recommendations to government.

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As a Your Story lawyer, I discuss with people their options for sharing their story, give them free and confidential legal advice, and support them through the Royal Commission process. I also connect them with other supports, including free counselling, and help with other legal problems they might dealing with, such as the NDIS. Your Story is independent of the Royal Commission and our legal support is free, confidential and available to anyone who needs it.

Having a child with a disability is one of the reasons I became a Your Story lawyer, which is the most rewarding job I have ever had. It has been a privilege to be in this role supporting people with disability, other carers and parents, and other supporters to take part in the Royal Commission. It also led me to post‐graduate studies in disability and inclusion, which have been challenging, rewarding and invigorating, and have given me and my career a new focus. I plan to spend the rest of my working life in roles that support people with disability.

My experience as a carer helps me to empathise with other carers and parents who contact our service. It can also make me a bit more vulnerable at times when I hear about awful experiences. Seeing their strength and determination to make a difference motivated me to recently share my own story and recommendations in a written submission to the Royal Commission.

It only took an hour to put down into words thoughts and ideas that had been percolating. It was a cathartic experience and afterwards I felt drained but also like a weight had been lifted – something I hear from many of my clients.

I told the Royal Commission about how a good school and supports have been critical for my son and our family. How having a supportive employer and being able to request different working arrangements, including working part-time and accessing sick or carer’s leave for appointments, is essential for carers who want to work.

Michelle Bowler. Image: Supplied.

I also recommended several short courses and workshops, including the Healthy Mothers Healthy Families course, which came at a crucial time for me – a couple of weeks after my son was diagnosed. Being in the company of other mums and learning about the phases that mothers of children with disabilities can go through was just what I needed.

I also shared my hopes – that the Royal Commission, and all the stories it has received, make a difference. That people with disability are much less likely to be mistreated and disregarded following the Royal Commission and the government's implementation of its recommendations. I want all people with disability to be able to have a good life just like everyone else.

Having an autistic child has its positives. I love my son and the way he looks at the world very much. He is a thoughtful, kind, smart and funny kid. I don't want him to change but I want the world to change. That’s why I decided to share my story with the Disability Royal Commission.

Change starts with our stories.

On Tuesday 18 October, Michelle will host Your Story’s free online event, National Carers Week: Our stories matter too!, which will feature two guest speakers and include Auslan interpreters and live captions.

For more information about the Disability Royal Commission or to access free legal support to share your story, contact Your Story Disability Legal Support on 1800 77 1800 or visit the website for other ways to get in touch: yourstorydisabilitylegal.org.au.

Feature Image: Supplied.