Welcome to Eureka Street

back to site


Leaving behind an adult son on the spectrum

  • 10 November 2017


What if you're a Baby Boomer thinking about retirement and you have an adult son or daughter on the autism spectrum? What if they're going to need supported living when you're gone?

In October, my son turned 25. On his birthday it's okay to have a particular cake but it isn't okay to have candles or sing 'Happy Birthday'. It's okay to have a present he nominated but it isn't okay to have surprises or fussy displays. Birthdays are very low-key in our house.

This might not sound like a terrible problem, but this lack of flexibility and seemingly perverse preferences are the norm. Weathering a change or adding a new task to his routine takes a multi-pronged strategy and patience. He often finds peoples' good intentions intolerable.

This means that my son is not everyone's idea of a great housemate, but he'll need supported care in the future that understands autism. Worryingly, after the school years, there's a gap in support services for many vulnerable adults. This results in some young people living in aged care. It's not good enough for them to be on the resource scrap heap.

In June, Senator Pauline Hanson suggested autistic children didn't belong in mainstream classrooms. Her alienating comments demonstrate her ignorance of how few options there are and how greatly the pathways to support vary.

Sharon Knight, MLA for Wendouree (Victoria) and mother of 28 year old Tom, with autism, says, 'Tom's disability was so apparent that there was no question about him getting services ... Support agencies advocated for us. And that was so important ... I feel really sad and angry at times about those families that have to mount that argument in a very direct way.'

Services are stretched. My son was discharged from services simply due to the loss of staff in the public system. Success with applications can come down to what a doctor emphasises in their report. At eight, he could reach out and place a piece of bread in a toaster, so the doctor ticked the 'prepare a basic meal' box. The successful second report for Centrelink was done by an occupational therapist, emphasising difficulties with anxiety and following instructions.


"With one in a hundred children getting an autism diagnosis, and autism accounting for 31 per cent of NDIS participants, how can we not come to grips with the fact that lifelong support is necessary?"


Navigating services can be a bureaucratic part-time job, a strain