News/Announcements

My Daughter and I Were Diagnosed With Autism on the Same Day

mother and daughter wearing summer clothes on a garden path

Autistic moms can face judgment while struggling with their own diagnosis and advocating for their children.

By Jen Malia

“You convinced yourself that you and our daughter have autism,” my husband yelled. “You did all this research and told the doctor what he needed to hear to diagnose you!”

“No, it wasn’t like that,” I said. “You know about all the testing we went through.”

“I can’t believe you brought her into this,” he said. “You’re like those mothers who make up medical problems about their kids. Why can’t you just let her be a kid?”

Hunter's first autism-specific high school offers hope to students and their families

Penelope Green

LARA Cheney was studying early childhood in the late '90s in Newcastle when one of her casual jobs made an impact.

"I was working at Newcastle Temporary Care, at a respite home, supporting children attend social clubs and in their homes, and for a while I had a boy who was about seven stay at my house on a Tuesday night," she recalls.

500 children forfeited to state in NDIS standoff

New figures reveal the human toll of a five-year NDIS funding fight, with hundreds of families pushed to relinquish their children into state care.

By Rick Morton.

For the past five years, the National Disability Insurance Agency has squabbled with state governments over who pays to support children with a profound disability. In that time, hundreds of families have been pushed to the brink. The care they were promised never came.

Ask An Expert: The Balancing Act of Supported Decision Making

What’s the deal with decision making?

Such a great question! The right to make your own decisions. It doesn’t get more fundamental than that when considering what makes us human. Questioning a person’s capacity to make decisions is one of the gravest insults one can make, yet in disability it can be thought of like an item on a grocery list. The assumption that people with disability have the right to make their own decisions, and should be given every support to do so, is a transgressive idea in our society. And as with any rights based social change, implementation can get a little tricky.

Submission/comment to Productivity Commission Mental Health inquiry

Subject: re: Your Mental Health inquiry submission [SEC=UNCLASSIFIED]
Date: Thu, 10 Oct 2019 09:44:39 +1100 (AEDT)
From: mental.health@pc.gov.au
To: convenor@a4.org.au

Thank you Mr Buckley! We have received your submission.

For any other queries, please email mental.health@pc.gov.au

Below is a record of the information you sent us:

Talking About Autism

Why language matters.

Erin Bulluss, Ph.D., and Abby Witts

Language is a powerful tool; it can be used to describe the plain, the profound, and the profane. With language, we make choices not only about what we say, but how we say it. Surely we can all recall a time when we were hurt or buoyed by something said to or about us, not because of the statement itself but, rather, how it was framed.

UN Report on Australia and the CPRD omits autism

The UN Committee reviewing Australia's implementation and compliance of the CRPD published its Concluding Observations - see https://www.afdo.org.au/wp-content/uploads/2019/09/UN-Outcomes-Report-on-Australia.pdf

Their reports fails to mention autistic Australians. Autistic Australians are the biggest distinct primary disability type in the NDIS and the NDIS is the dominant mechanism for tackling CRPD issues.

After 12 months, NDIS commission still hasn't answered family's questions about son's bruises

Sam kisses his mother, Cheryl, on the cheek.

In October 2018, the family of a severely disabled man became so concerned about bruises he was suffering while living in full-time care that they asked for them to be investigated.

Key points:

  • The NDIS Quality and Safeguards Commission is yet to return a finding regarding injuries suffered by a full-time care client in NSW
  • Sam Donaldson's mother has been waiting a year to find out what happened to her non-verbal son and has requested a new care provider
  • Disability advocates say they are "disturbed" by a "lack of accountability" in tracking the investigation, and that lengthy delays are common

Against neurodiversity

Moheb Costandi is a molecular and developmental neurobiologist, author and freelance science writer. He writes the blog Neurophilosophy, and his latest book is Neuroplasticity (2016). He lives in London.

I couldn’t help feeling a little apprehensive before my meeting with Thomas Clements. The British 30-year-old has what used to be called Asperger’s Syndrome, and describes himself as ‘slightly autistic’. Until our meeting in London, I’d had few close encounters with autistic people, so I wondered how to act, and how he might respond to my actions. Would he make eye contact with me? Should I try to shake his hand?

Despite my apprehension, the meeting went well. Clements gets extremely confused in a group of people, and avoids those kinds of situations, but has no problem with one-on-one interactions. We met in the West End, had chicken katsu curry for lunch, and then walked into nearby Chinatown, his favourite part of town.

Minister defends $4.6b NDIS underspend

Rebecca Gredley

Participants in the national disability insurance scheme will keep receiving enough support despite its $4.6 billion underspend, the minister responsible insists.

The Morrison government revealed on Thursday the budget was almost out of deficit, thanks to less money going to the NDIS.

NDIS Minister Stuart Robert has defended the underspend, saying no participant had received less money as a result.

He said 100,000 participants "couldn't be found" or were counted twice, suggesting less money was now needed for the scheme.

Autism/ASD submissions on planning to NDIS Parliamentary Joint Committee

The Joint Standing Committee on the National Disability Insurance Scheme (NDIS) is inquiring into the the NDIS's planning process.

A number of autism/ASD-related organisations, including A4, made submissions to the inquiry. The Committee published submissions here. The submissions by autism groups are:

Students with disabilities leaving WA schools because of 'poor resourcing, training'

Dozens of children with disabilities are being pulled out of West Australian schools by parents who say they are not getting enough support in the classroom.

Key points:

  • William Anthony, 16, has been pulled out of school and is going to work with his father instead
  • His parents don't believe William's autism needs are being adequately met at his high school
  • People With Disabilities WA has been working with 40 other families in the same situation

The National Disability Insurance Scheme is failing to improve access to education, families say. Why?

Katie Burgess

Less than half of Canberra families say the National Disability Insurance Scheme has improved their child's access to education, as experts say the scheme is not working well with state and territory education departments.

Only 48 per cent of participants aged 6 to 14 in the ACT have seen an improvement in their access to education under the scheme, according to the COAG disability reform council's latest quarterly report.

Autism in relationships: Therapist inundated by number of couples seeking help

Bec Whetham

Relationships can have their challenges, but what if the challenges relate to an inherent part of a person?

A Melbourne therapist said that was the question being raised for many couples where one partner did not know they were autistic.

Melbourne-based autism therapist and special education teacher Jo White has spent the past 20 years working with autistic children, adults and their parents.

Mother's despair after NDIS rejects requests for hoist or lighter wheelchair to help her care for children with disabilities

SHANNON Manning wakes at 3am every day to care for her two children with disabilities.

Prone to regular attacks from her kids’ meltdowns, she has nursed broken bones and bruises in order to provide for the children she loves more than life itself.

Her non-verbal daughter Meadow, 7, suffers from severe autism and epilepsy and is in a wheelchair. Her boy Madden, 6, has Cantu syndrome.

As the sole carer she is lucky if she sleeps for four hours a night; her only assistance the presence of a carer for six hours each weekday.

'The phrase that pays': Schools push parents of ADHD children to switch diagnosis

Caitlin Fitzsimmons

One in five parents of children with ADHD have been urged by their school to seek a different diagnosis as a means to gain funding for teacher's aides and other support for their child at school.

Teachers are pushing families of children with attention deficit hyperactivity disorder (ADHD) to try to obtain a diagnosis with better support in the school system – mainly autism, but also oppositional defiance disorder (ODD) or extreme anxiety. The national survey of 1184 parents of children with ADHD found 21 per cent had experienced pressure for "escalated diagnosis".

Is it autism? The line is getting increasingly blurry

Around the world, the number of people diagnosed with autism is rising. In the United States, the prevalence of the disorder has grown from 0.05% in 1966 to more than 2% today. In Quebec, the reported prevalence is close to 2% and according to a paper issued by the province's public health department, the prevalence in Montérégie has increased by 24% annually since 2000.

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