Our oldest son Finlay (just turned 15) is an incredibly beautiful boy – smart, caring and active. A member of the local Air Force cadets, surf lifesaving club and a group which does orienteering, rock climbing and canoeing, he values experiences and friendships. At school this year he got the kind of grades that make you want to squeak with excitement. Oh and, yes, he lives with disability, being diagnosed on the Autism spectrum with Attention deficit hyperactivity disorder (ADHD), learning difficulties and anxiety. His psychologist has said he’s ‘the most complex kid he has ever dealt with’.
My wife, Kirsten, and I have made sure his disability doesn’t define him. We both focus on learning more to ensure he has an independent and full life after school. Kirsten’s doing her PHD on the positive experiences of parenting children on the autism spectrum. She hopes to drive policy change and arrest the overwhelming view that all experiences are negative. The learnings from this will be invaluable across the community.
I mustn’t forget his two younger sisters who like all siblings argue and fight… but you won’t find a deeper love and understanding than the one they have in a neuro typical family.
One of the greatest challenges we face as parents is not so much guiding Finlay, but dealing with the lack of understanding and judgement of the wider public. This includes friends, family, schools, extra-curricular activities, shops – pretty much everywhere we go. In our son’s younger years the judgment and critique triggered isolation for our family. To begin with, we weren’t accepted in social or sporting groups without critique.
We also needed to manage Fin’s food allergies through a diet different to others. It’s evident that what he eats majorly effects his behaviours and his capacity to digest certain foods is also limited. Strangely, this was one of the biggest social hurdles for us to overcome. ‘Let him have a piece of cake, let him have gluten, a milk shake, an ice cream…” Yes, all tastes and memories from our youth, yet for Fin they trigger really negative behaviour, digestion and illness. To this day friends and family still pass judgement on us as parents.
The lack of understanding in his early school years, while incredibly challenging to deal with as parents, gifted Fin the trait of resilience. He’s fortunate that one of the special things about him is his capacity not to hold a grudge and his eagerness to be accepted. This stands him in good stead throughout high school, yet also worries us as choices become more complex.
Regardless of external perceptions, our focus and the outlook for Fin is extremely positive post-school. We utilise NDIS funding to build capacity for independent living and social skills and we’ll evolve this next year to formally look at employment. Our challenge is to find a balance to ensure he isn’t told he can’t do something and, at the same time, finding options should he be unsuccessful at attaining his dreams.
This is what is the most worrying for Kirsten and I – so many organisations are not equipped culturally to understand the quirks our son has. It’s funny when you think about it, most companies are so quick to be proud of their culture, teamwork and lately community focus, yet for many the recruitment process is geared against employing anyone with any type of disability. Work environments are not universally designed and rely on ‘exception-based’ interventions to allow for people not in the ‘normal’ bandwidth to be successful. The disabilities Fin lives with are not visible or easily recognised and can come across as behavioural issues. Employers are often willing to modify workplaces for physically disabled people and there is also funding available which is awesome. Workplaces are statistically less likely and less supported to make allowances for non-physical disabilities.
Finlay’s future is looking bright, yet, like all parents, we live with the anxiety that it might not be. In Australia, the unemployment rate for autistic people is 31.6 per cent. This is three times the rate of people with disability, and almost six times the rate of people without disability.
Fin is fortunate to have a mum who never gives up, is smart enough to navigate the world of NDIS and support services and is a tireless advocate at school and in the community. I do my bit on the social scene opening doors of friendship, showing him how to fix and build things, work on cars, surf, ride a bike… you know the cool practical stuff Dads get to do.
Let’s end this brief insight into my son’s life with this. Fin is kicking ass at school, he loves Air Force Cadets and has a life goal and gives to his community through surf lifesaving. He loves his social group activities in the bush and is a beautiful boy who is loved supported and happy. He’s a son, a brother a grandson, a cousin and could be knocking on your door looking for work in the next few years. When you hear that knock, please see my son for who he is and what he can do, not what you think his disability is supposed to be able to do.
Stu’s heads up the Customer Insights & Analytics team at CoAct and keeps us on our toes by measuring our performance and impact.
International Day of People with Disability is on 3 December 2020. This year’s theme is “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World”. Find out more on the International Day of People with Disability website.