Update on new practice guideline for supporting the development and participation of children on the autism spectrum and their families

14 Oct 2021

Work is underway to develop a national practice guideline for supporting the development and participation of children on the autism spectrum and their families, as previously announced in June 2021.

The guideline will support families to make informed choices when accessing services, and provide professionals with a set of recommendations to guide ethical and effective service delivery. The recommendations will be based on the best available research and a comprehensive community consultation process.

The guideline is being developed according to the National Health and Medical Research Council’s recommended process.

An important first step is to establish a Guideline Development Group to lead the research and community consultation process. This group has now been created and includes people with diverse knowledge, skills, experience, and perspectives.

Among the 15-member group are:

  • autistic adults;
  • parents and other family members of children on the autism spectrum, including children and young adults with complex needs;
  • people with expertise in capacity building in Aboriginal and Torres Strait Islander communities, ethics, and research integrity;
  • clinicians with experience in government and non-government sectors;
  • researchers with expertise in the guideline development process, including community consultation.

The members of the Guideline Development Group are: Gary Allen, Katharine Annear, Valsamma Eapen, Jessica Feary, Emma Goodall, Sarah Pillar, Teresa Pilbeam, Felicity Rose, Nancy Sadka, Natalie Silove, Rhylee Sulek, David Trembath (Project Co-chair), Kandice Varcin, Hannah Waddington and Andrew Whitehouse (Project Co-chair).

These members have been appointed based on the knowledge, skills, experience, and perspectives relevant to the guideline development process, not professional affiliations.

Next steps

With the Guideline Development Group established, the next step is to review the research evidence, building on the synthesis completed in 2020, and begin the community consultation process.

There will be a number of ways for members of the autistic and autism communities to connect with, and contribute to, the guideline development process:

  • In November 2021, we will:
    • provide a way to register interest in contributing to the guideline development process, and to receive updates.
    • share details of a Reference Group that is being developed to represent key stakeholder communities including autistic individuals, parents/siblings/caregivers, practitioners, and peak bodies.
  • Between January and March 2022, all key stakeholders will be invited to participate in a Delphi survey process that will assist in formulating recommendations.   
  • Between February and June 2022, there will also be online community consultations open to anyone who would like to attend, conducted in a variety of formats (e.g., live, asynchronous, interactive, non-interactive) to further inform the development of recommendations. We will ensure there are opportunities for everybody’s views to be heard as part of this process.

Australia has a wealth of insight, experience, and expertise among its autistic individuals, family members, and a large and diverse professional community. We look forward to capturing these diverse insights and perspectives, with the aim of achieving consensus on key recommendations for effective, ethical, feasible, and acceptable supports for children on the autism spectrum and their families. 

Read more about the new practice guideline