Invisible condition ‘no less urgent’
Student shares autism experience and why she needs NDIS
Especially as a person who presents as somebody who doesn’t look like they need that assistance … every day I’m concerned that they’ll (stop) my funding
JANET WALSH
A GEELONG student is “terrified” of losing disability
support funding which she says helps her to live independently.
Janet Walsh did not know she was on the autism spectrum until she was 38 years old.
Now 40, the Deakin University PhD candidate said because she was perceived to be high functioning, she was not seen as someone who needed assistance from the National Disability Insurance Scheme.
But, Ms Walsh said she needed the help to thrive.
“I can’t function in clutter and chaos,” she said.
“If I’ve got PhD work to do but the dishes need to be done, I need to fix that.
“The first thing in the chain stops all the other things from getting done.”
Ms Walsh is worried NDIS Minister Bill Shorten’s suggestion that the NDIS be repurposed to fund only “the most profoundly and severely impaired” could leave her without any funding.
Mr Shorten told other media earlier this year that the NDIS couldn’t afford to be “the only lifeboat in the ocean for people with a disability”.
Ms Walsh said on her current wage she couldn’t afford the assistance she received with the NDIS.
“I’m currently pretty terrified that I, especially as a person who presents as somebody who doesn’t look like they need that assistance … every day I’m concerned that they’ll (stop) my funding,” she said.
“Maybe once I finish my PhD I’ll be able to earn enough.
“I’m making less than $30,000 a year, whilst also trying to maintain the house, drive a car, and look after myself.
“So, without the NDIS I could not see a psychologist, I could not have an occupational therapist helping me … and then nothing gets done.”
Ms Walsh said she also feared she would experience what a lot of people with autism experienced without support from the NDIS: “a chain of jobs that make us feel like we can’t do a job, or that we’re not suited for work”.
“Even those of us who have degrees often don’t get jobs that suit our abilities because of getting through the interview process.
“Or if we managed to get the job, we can’t sustain the energy of what some people might be able to without having to think about the social dynamics all the time.”
Ms Walsh was among the attendees at the Australasian Society for Autism Research’s sixth biennial international conference held at Deakin’s Waterfront campus on November 29.
ASfAR’s conference convener Dr Mark Stokes said without schemes like those funded by the NDIS, people on the spectrum were often treated as having a personality defect.
“(The change) will result in the social isolation of some children, whose parents avail of NDIS funding to manage their early social deficits,” Dr Stokes, of Deakin University’s Healthy Autistic Life Lab, said.
“Their condition may not be visible, and is diagnosed on the basis of behaviour, but it is no less urgent to address.”
The National Disability Insurance Agency, which implements the NDIS, was contacted for comment.