With a recent video, the National Disability Insurance Agency (NDIA) released a bit of information about its NDIS Early Childhood Early Intervention (ECEI) Approach as it affects autistic children. Regrettably, The NDIS ECEI Approach falls well short of best practice early intervention (EI) for autistic children.

Autism Aspergers Advocacy Australia, a national grass-roots ASD advocacy group known as A4, applauds the NDIA’s intention to help children with disability into EI as quickly as possible. However, A4 is concerned that the NDIS ECEI Approach:

I am a 43-year-old autistic wife and mother to two beautiful autistic children. Our family is what I like to describe as ‘neurodivergent’: our brain and thought process is different to others based on our genetic make up. So it was with shock and disbelief when I learned that four people from the one family had died on Monday 17 October in Davidson, NSW. 

They say that the mother of a child with autism experiences a level of stress comparable to that of a combat soldier.

Grace Fava certainly did.

Her two boys, now aged 15 and 13, were diagnosed with autism at the ages of three and two respectively and the family plunged into near-constant crisis, including a three-year period of faeces smearing and several terrifying occasions when they escaped naked from the windows.

"In the early days it was horrendous," Ms Fava said.

CAROLINE OVERINGTON

Disability advocates have express­ed dismay at the public’s response to the gassing of two ­autistic children in the northern Sydney suburb of Davidson, saying the case should be treated like any other murder.

Mother of six Samantha ­Connor, who has two children with autism and who has been in Adelaide this week, pushing against a proposed new law that would allow for euthanasia for the terminally ill in certain circumstances, says the Sydney children were murdered, “so why do we have people saying: ‘oh, but it’s understandable’?’’

I really wish that I was writing a positive story, but sadly the NDIS seems to be a growing mess. The NDIS has many happy participants from the trial period, but there are numerous issues. 

RICK MORTON, Social Affairs reporter

The future of the $22 billion Nation­al Disability Insurance Scheme has been thrown into ­crisis after as many as 2000 people with serious mental health conditions and disabilities were shut out of the program in the ACT, the first jurisdiction to fully adopt the new model.

The territory scheme reached its “target” of 5075 clients within hours of full rollout on September 30. Newly eligible people have been turned away and told to wait for a vacancy, which is typically only available when someone in the NDIS dies.

Dear Mr Bowen,

Autism Aspergers Advocacy Australia (A4), the national grassroots advocacy group for autism spectrum disorder (ASD), is alarmed and disappointed by the National Disability Insurance Agency’s (NDIA’s) video on Facebook (see https://www.facebook.com/NDISAus/videos/594542027373310/ … a transcript is given below) about how its Early Childhood Early Intervention (ECEI) Approach is meant to work for autistic children. Disappointingly, this video shows that the NDIA continues to ignore/rejects expert advice and the peer reviewed research literature that defines best practice (and evidence-based) early intervention (EI) for autistic children (see http://a4.org.au/node/843).

The NDIA’s video features Michelle and her children (hopefully not their real names). While the following is critical of the video’s content, it is not intended to criticise Michelle who appears to be doing her best for her children. The NDIA is wholly responsible for the content of the video.

In August, the National Autistic Society called on medical professionals to change the way they diagnose women and girls with autism spectrum disorder (ASD). Ever since the term autism was first coined by Hans Asperger in 1944, it has remained predominantly, if anecdotally, associated with men and boys. As a result, women with the condition may be being overlooked, even as the public becomes increasingly aware of its existence.

Rebecca Ann Charlton, Goldsmiths, University of London

If you mention autism to most people they will think about children, but it is a lifelong diagnosis. Children with autism grow up to be adults with autism. Little is known about how the symptoms change with age. This is because autism is a relatively new disorder, first described in 1943 and not regularly identified until the 1970s. It is only now that those people first diagnosed are reaching older age that we can start to learn whether the disorder changes over a lifetime.

There have been some suggestions that symptoms may reduce as people get older. These reports, describing fewer difficulties with older age, are often from people with autism themselves and from their families. But how much evidence is there for this? Our latest research provides some answers, and also raises some new questions.

Yellow Ladybugs is conducting a survey about autistic girls, girls diagnosed with Autism Spectrum Disorder.

More information about the survey, and the survey itself, are at https://www.surveymonkey.com/r/yellowla… 

This survey is focused on the experience of autistic girls, aged under 18 years old.  

We invite parents, carers and autistic girls under 18 to respond to this very important survey.