Victorian mother struggling to get son with severe autism vaccinated against COVID-19 ahead of state reopening

Neelima Choahan

When Victoria opens up later this month, Janine Terry is scared her only son will be locked up at home forever. 

For the past five months, the 62-year-old has been desperate trying to get him vaccinated. 

Tim, 39, has severe autism, osteoporosis and epilepsy. He is also terrified of needles. 

"In May … I asked our family doctor about Tim being vaccinated," Ms Terry said.

Victoria says it is 'stepping in' following Commonwealth failure to boost vaccination rates in disability sector

The Victorian government says it has been forced to step in and fund targeted hubs after failing to get a response from the Commonwealth on low vaccination rates among people with a disability.

Key points:

  • More than 71 per cent of Victorian NDIS participants aged 16 and over have received their first dose of the COVID-19 vaccine
  • Victoria is launching 10 dedicated pop-up vaccination sites for people with disability
  • From October 8, all of Victoria's state-run vaccination centres will allow people with disabilities to get vaccinated any time without a booking

The Minister for Disability, Ageing and Carers, Luke Donnellan, on Thursday announced $5 million to boost vaccination rates among people living with a disability.

This is what it felt like to be lost in Australia's COVID-19 response as a person with autism

Nick McAllister

When COVID-19 came uninvited to Australia, Prime Minister Scott Morrison and other state leaders stood behind their lecterns and delivered their messages to all Australians.

Content warning: This story includes descriptions of a struggle with mental health.

But it felt to me they weren't speaking to us all. 

Regional NDIS recipients not even able to use half of their funding

Georgie Hewson

Daniel Stanley is a carer for his wife and two daughters but has spent most of his days for the past five years learning to navigate the National Disability Insurance Scheme (NDIS).

Key points:

  • Figures show NDIS funds by recipients in Queensland regions are under-used
  • Providers and recipients say there are not enough options in smaller, more remote areas
  • Support coordinators are trying to come up with solutions

The biggest hurdle is where they live: Allora on Queensland's Southern Downs. 

Access and Sensory COVID-19 Vaccination Clinic just 'ticking a box' for some autistic Canberrans

Charlotte Gore

The ACT government's Access and Sensory Vaccination Clinic was designed to be a space to support vulnerable Canberrans to get vaccinated against COVID-19, but some members of the autistic community say the facility comes up short.

Key points:

  • The sensory vaccination clinic shares its waiting room with a walk-in centre despite being announced as a "dedicated space"
  • Members of the autistic community have criticised the centre for failing to provide an adequate environment for them
  • ACT Health Minister Rachel Stephen-Smith says she is always happy to hear feedback on how the centre can be more sensory-friendly

The clinic shares its waiting room with the walk-in centre already on site, meaning those who need to use the facility for its sensory-friendly spaces have to wait until they are taken to a private room for a chance to be in a dedicated environment.

NT NDIS participants, disability service providers flag concerns about funding cuts

Mitchell Fielke is non-verbal but loves tactile surfaces such as the water and sand. (Supplied: Catherine Fielke)

Catherine Fielke describes trying to get funding for her five-year-old son through the National Disability Insurance Scheme (NDIS) as "a constant battle".

Key points:

  • Mitchell Fielke's new NDIS plan has a third of the funding of the previous plan
  • NT disability service providers have flagged concerns over plans being cut "significantly" without consultation
  • The NDIA says it is committed to delivering a "consistent and quality" experience for all participants

"It's honestly like a full-time job," she said.

Therapy for babies showing early signs of autism reduces the chance of clinical diagnosis at age 3

Andrew Whitehouse, The University of Western Australia; Jonathan Green, University of Manchester, and Kristelle Hudry, La Trobe University

A therapy for infants showing early signs of autism reduces the chance of the child meeting diagnostic criteria for autism at three years of age. That’s according to our new research, published today in the journal JAMA Pediatrics.

Therapy for children with autism often begins after receiving a diagnosis, which usually doesn’t occur until after the child turns two.

Our findings suggest starting therapy during the first year of life, when the brain and mind are developing rapidly, may provide even greater benefits.

Oliver Hetherington-Page says his experience of autism doesn't fit the pop culture mould

I'm not Sheldon Cooper.

I am, however, autistic, which means I'm constantly compared to him.

This is ironic because according to the producers of The Big Bang Theory, Sheldon Cooper isn't actually autistic.

And yet my autism is constantly compared – and seemingly failing to live up – to this fictional character.

More celebrities are coming out as autistic. That makes a huge difference.

Zack Budryk

Anthony Hopkins, Wentworth Miller and others are showing us that autism is more varied than it once seemed to be.

In late July, actor Wentworth Miller of “Prison Break” and “Legends of Tomorrow” posted an image of a white square to Instagram, accompanied by the revelation that he had been formally diagnosed as autistic a year before.

‘It’s life or death for us’: The struggle for this mother to get her kids with autism vaccinated

By Eden Gillespie

A mother of five autistic children from regional NSW told The Feed she’s struggled immensely with getting them vaccinated. With the children still unvaccinated, and a severe asthmatic herself, she’s fearful about the state’s plans to open up in October.

NSW’s reopening has been described as the ‘light at the end of the tunnel’ but as severe asthmatics and the parents of five children with autism, Casey* and her husband are terrified of where the eased restrictions could leave them.

Submission: Autism, disability, and the National Disability Employment Strategy

derelict boat on sand at low tide

post-school employment boat awaits a rising tide of Autistic school-leavers

A4 made a late submission in response to DSS's consultation on a National Disability Employment Strategy.

Basically, A4 felt that DSS's proposed holistic strategy to address disability employment over the next decade is the same as it was for the last decade: it's the same strategy expecting a different result. Rather thank acting on what they "think" might work, some of the 10 years could be used to determine reliably what does work for the various parts of the disability sector, then implement working approaches more widely.

Are We Giving Autistic Children PTSD From School?

When we don't understand autistic kids we create a toxic environment for them.

Posted August 31, 2021 | Reviewed by Tyler Woods

Key points

  • We must understand the behavior of autistic children to help them.
  • Responding without understanding diminishes the personhood, self-esteem and trust of autistic kids.
  • Providing an environment sensitive to the needs of autistic students benefits all students.

For most autistic children, school can be a toxic environment. Working on the advice of experts, school staff aim to have autistic children’s behavior conform to neurotypical expectations. The more a child is indistinguishable from mainstream peers, the more successful the school intervention is believed to be.

Coalition has made a mess of NDIS, says Judy Fischer

The widow of former deputy prime minister Tim Fischer has accused the Coalition of mismanaging the National Disability ­Insurance Scheme, which she says is shrouded in secrecy and too ­important to fail.

Judy Brewer, a high-profile disability sector advocate whose son Harrison has autism, said she was angry the ­government appeared to be blaming people with disabilities for cost blowouts when it was likely the $24bn scheme’s financial assumptions were wrong.

Sydney's Giant Steps school for students with autism linked to 18 COVID-19 cases

Eighteen people linked to a special needs school in Sydney’s north — including seven students — have tested positive for COVID-19.

Key points:

  • Parents were first notified a staff member tested positive on August 5
  • Seven students, three staff and eight family members are now positive
  • NSW Health says it does not disclose details on venues of concern unless there is a public health risk

The Giant Steps school in Gladesville caters for students with severe autism and has closed its doors after becoming aware of a positive case last week.

Enough ‘autism awareness’. The necessity now is action

Progress has been made, but the release of the profound film, The Reason I Jump, shows how much further we need to go

A film comes out this month that is among the most profound, thought-provoking and moving feats of documentary-making I have ever seen. It is about autism, and a state of being that far too many people either misunderstand or ignore. But as it ranges across lives played out in Japan, Britain, the US, India and Sierra Leone, it also shines a light on parts of the autistic experience millions of us would recognise in ourselves. In doing so, the film shows how little we still know about the human mind, but how much more we understand than we did even a decade ago.

Anxiety, not autism is holding many children back at school, researchers say

Sally Eeles

Queensland researchers say anxiety — not autism — is preventing many children on the spectrum from flourishing at school.

Key points:

  • Anxiety predicts quality of life more than a child's level of autism, researchers say
  • Researchers are hoping to reduce this anxiety by giving parents the skills to give to their children
  • Griffith University is seeking 30 families with an autistic child due to start prep in 2022 for the program

New national hotline to help Australians living with autism

Australians with autism will have access to online, digital and phone-based support services that can offer specific advice through a new national hotline.

The federal government will announce the $8.4 million funding boost to the program, called Autism Connect, on Tuesday.

Following its success, it will now become a national service that will be run by peak autism body, Amaze.

NDIA's secret report on PEDI-CAT (ASD) and NDIA misinformation

On the 12th October 2020, Mr Hoffman, the NDIA CEO, wrote a letter to NDIS participants, their families and carers. In his letter, he claimed that

The tools [for the NDIA's so-called Independent Assessment] have been ... used all over the world for many years.

A4 doubted this was true since no such tool existed for autistic people.

As a mother, senator challenges NDIS reforms

When Liberal Senator Hollie Hughes was elected to Federal Parliament, she paid tribute to her “gorgeous son Fred” who was diagnosed with autism in 2012, and vowed to pour her “blood, sweat and tears” into autism and disability support.

“Fred is the light of our family’s life in so many ways,” Senator Hughes said in her maiden speech in 2019. “Whether it’s all the developmental milestones he’s passed, when doctors said he wouldn’t; his love of Godzilla, New York and San Francisco, old-fashioned media; or just he and I watching David Attenborough specials, there is no one more loved, or who brings more love to this world.”


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