Caleb has autism, needs dialysis and a new kidney but Canberra Hospital says it can’t help him

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Ian Bushnell

A Canberra teenager with one failing kidney is facing a death sentence without dialysis and an eventual transplant but according to his mother, doctors at Canberra Hospital have told him he can’t be treated because of his autism.

Palmerston mother and full-time carer Leanne Browning says she was told on Christmas Eve that her 17-year-old son Caleb, who also has ADHD, only had a few months to live but did not fit the criteria for dialysis because he could not sit still enough and sedation would further damage his kidney.

And without dialysis, he cannot be put on the transplant list.

'Massive pressure': special needs classes clustered in Sydney's west

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Jordan Baker & Nigel Gladstone

Special needs classes in public schools are heavily concentrated in the most disadvantaged parts of Sydney, with 92 in the Blacktown local government area alone but none in Hunters Hill, Lane Cove or Mosman.

In the Liverpool and Campbelltown council areas there is an average of just over one class for students with disabilities per school, an analysis of NSW Department of Education figures by the Herald shows.

Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature

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Abstract

Despite significant advances in autism research, experts have noted that children severely affected by autism spectrum disorder (ASD) appear to have been understudied. Rigorous analysis of this observation has been limited, and the representation of severity has not been well-described. We assessed three domains of severity (communication ability, cognitive functioning, and adaptive functioning) in 367 treatment studies of children with ASD published 1991–2013. We found that the proportion of studies that included the severely affected population decreased significantly over time, as well as wide variability in measurement and reporting. Inadequate representation of the full autism spectrum in the literature could lead to an unbalanced picture of ASD and leave behind those with arguably the greatest need.

National Disability Insurance Scheme builds on Helping Children with Autism success

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As Helping Children with Autism (HCWA) celebrates its 10th anniversary, providers and families are looking to the National Disability Insurance Scheme (NDIS) to continue the important work started by the program.

HCWA was introduced by the Australian Government in 2008 to help families access crucial early intervention services for children with Autism Spectrum Disorder (ASD).

Since its introduction, HCWA has helped almost 53,000 children and their families with more than $550 million in early intervention services including social learning intervention, behaviour management, occupational therapy, speech pathology and cognitive and learning skills.

$4 million to fund research into Autism

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The Liberal National Government will provide nearly $4 million in funding for new research into autism, helping find better diagnosis, treatment and care for those affected by the developmental condition.

The research funding from the National Health and Medical Research Council has been allocated for five projects across Queensland, Victoria and New South Wales.

Adults on the autism spectrum prescribed mental health drugs without diagnoses

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Lachlan Gilbert

Off-label prescribing of psychotropic drugs to adults on the autism spectrum could be exposing individuals to harm.

Adults on the autism spectrum are being prescribed mental health drugs in instances where there is limited supporting evidence to do so.

This was one of the findings of a UNSW-led study that looked at the use of psychotropic medication – or medication for mental health problems – by adults on the autism spectrum.

Disability Groups Cautious Over NDIS Independent Assessment Pilot

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Luke Michael

Disability advocates say they will be closely watching an independent assessments trial to ensure it achieves its stated aims of fairer access and planning decisions for National Disability Insurance Scheme participants, rather than reducing access to the scheme.

The National Disability Insurance Agency last week announced an independent assessment pilot aimed at improving the consistency, accuracy and reliability of NDIA decision-making.

'Atrocious': People locked out, tied up and left to fester - and nothing police can do

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Harriet Alexander

The young man was kept in a garage thick with blowflies and the smell of faeces, feeding on meals left at an outdoor table where the dog also helped itself.

Neighbours observed him wandering the backyard for hours in a state of distress, slapping his face, biting himself, crying and banging on the back door to his family home. He had autism and an intellectual disability.

DAD... a film about autism and fatherhood

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Available to watch online now!

DAD... a film about autism and fatherhood is now available to watch online! We're thrilled to share our short documentary with you all! We hope it helps dads (and mums) navigating the world of autism and parenting. Whether you're new to this or have been in it for a while, there are so many powerful messages from these twelve incredible dads that you need to hear. So please watch, share, send us your reviews... and most importantly remember, you are part of a bigger “fraternity of parents who are wonderful”

National guideline to improve diagnostic practices for Australians on the autism spectrum

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Media Release

CANBERRA: Developed and published by Autism CRC with the financial support of the National Disability Insurance Agency (NDIA), Australia’s first national guideline for the assessment and diagnosis of autism was officially released today (16/10/2018).

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