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?”

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.

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

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:

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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