Have your say on the future of autism research

Today we call on autistic Australians, families, carers, and the broader autism community to have their say on the future of autism research priorities. Individuals and organisations involved in providing services and supports, as well as managing policy that affect autistic people and the autism community are also asked to contribute.

The outcome of this community consultation process will help guide the future focus of autism research activities and research funding in Australia.
 

Landmark summit on autism health care kicks off

A panel of autism scientists and advocates is charged with a tall order: making recommendations for the care of autistic people worldwide. The panel is slated to meet for the first time today after the 2019 International Society for Autism Research annual meeting in Montreal.

Convened by the journal The Lancet, the group includes more than 20 of the world’s leading autism researchers, clinicians and advocates. Its goal is to review research and make concrete suggestions on health care and health policy.

Autism Scorecard - Federal Election 2019

The Australian Autism Alliance released its 2019 federal election autism scorecard! It helps understand how the major parties will create #Change4Autism if elected to govern on Saturday 18 May.

Download the #Change4Autism campaign from www.australianautismalliance.org.au/election2019!

The four major priorities of the Change4Autism Election Manifesto were:

  1. Urgent action to eliminate NDIS barriers to vital supports for autistic people
  2. A National Autism Strategy
  3. Establish a Royal Commission into violence, abuse and neglect of people with a disability
  4. High-impact, sustainable disability advocacy

Against these priorities the parties fared:

Advocates blame NDIS failures as families give up severely disabled children to child protection

Richard Willingham

Children with high-needs disabilities are living in child protection because their parents can no look longer after them, with advocates blaming a lack of support from the National Disability Insurance Scheme (NDIS) for forcing parents to give up their children.

Key points:

  • The McNeills gave their son up to state care because he needed 24-hour supervision and they did not have enough help from the NDIS
  • Only half of the 48 children living in residential state care in Victoria have some form of NDIS support
  • The situation was labelled "horrendous and appalling" by advocates, who say children have a right to stay in their own home

The Concept of Neurodiversity Is Dividing the Autism Community

Simon Baron-Cohen

    It remains controversial—but it doesn't have to be

    At the annual meeting of the International Society for Autism Research (INSAR) in Montreal, Canada, this week, one topic likely to be widely debated is the concept of neurodiversity. It is dividing the autism community, but it doesn’t have to.

    The term “neurodiversity” gained popular currency in recent years but was first used by Judy Singer, an Australian social scientist, herself autistic, and first appeared in print in the Atlantic in 1998.

    Families need guidance before buying a communication app for autism

    Cathy Binger

    Many children with autism have little to no functional speech, and their families are often desperate to help them communicate.

    In today’s connected society, these families are likely to hear about a variety of communication apps — some specifically targeted at children with autism — available for mobile devices, including iPads. Often the advertisement includes a video of a child who starts communicating using the app’s voice output, effortlessly asking for a cup of juice or saying, for the first time, “I love you.”

    Study identifies predictors of early death among autistic people

     

    People with autism who avoid social interactions or have troubles with daily living skills — from using a toilet to preparing meals — are at increased risk of an early death, a new study suggests1.

    Autistic people are more than twice as likely as those in the general population to die prematurely. They are also at increased risk for a range of health conditions, such as diabetes and cancer, that can be fatal.

    The new study is the first to identify the specific factors that forecast mortality in autism. The researchers followed 406 autistic people in the United States over a 20-year period. They found that the 26 people who died during the study tended to have poor scores on measures of social ability or daily-living skills at the start of the study irrespective of age or health.

    ‘Ready to try anything’: Parents say education is failing autistic kids

    Pippa Bradshaw

    Parents of children with autism have called for an overhaul to an education system they say is failing their kids.

    Mum Kristy is at her wits' end trying to get help for her 13-year-old daughter.

    "She just goes crazy," Kristy said.

    "It can start off by just being silly, she gets quite hyper, silly, and then she can get abusive verbally. From there she can get physical."

    Mum Kristy is at her wits' end trying to get help for her daughter. (A Current Affair)

    Hobart high school 'cage' for teenagers with autism 'akin to Risdon jail'

    Rhiana Whitson

    A lockable fenced play area for teenagers with autism at a Hobart high school has been described as a "cage" by the parent of one student, who said it risked "taking away from their humanity".

    Key points:

    • The play area is part of the Department of Education's flexible learning program
    • A disability advocate says "the system is letting us down"
    • A Government spokesman said medical professionals, "including paediatricians, psychologists" and OTs were consulted about the fenced area

    Autistic Australians are being locked out of the workforce, study finds

    Of unemployed people with autism, 54% surveyed said they had never held a job despite wanting to

    Australians living with autism are being locked out of the workforce, while some of those who found paid employment say they have previously lost a job because they are on the spectrum, new research claims.

    A study commissioned by autism peak body Amaze, and described as an Australian-first by its authors, surveyed the employment experiences of those living with autism and their carers, as well as attitudes towards autistic people in the workforce.

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