Executive summary
Autistic children deserve a childhood full of love, family, fun, learning, and personal discovery. They should be safe, have their rights respected, and be supported. Many autistic children experience challenges to their learning, participation, and wellbeing. These challenges begin with the environment and belong to society, but are often most effectively addressed through a combination of supporting children’s development of functional and personally meaningful skills; supporting families and those around them to nurture their growth; and creating safe, accessible, and enjoyable spaces.
This Guideline has been developed to help ensure that practitioners who provide supports to autistic children and their families do so in ways that are safe, effective, and desirable to children and their families. The Guideline focuses on practitioners delivering supports in community and clinical settings. It concentrates on non-pharmacological supports (i.e., not primarily based on medication) that aim to support children’s learning, participation, and wellbeing. These supports often go by other names such as interventions and therapies. The Guideline focused on children aged 0-12 years but has a lifespan perspective, recognising that early supports should lay the foundation for a positive future. Pharmacological supports and supports specifically designed to be delivered by teachers and educators were beyond the scope of the Guideline.
A Guideline Development Group led the development of this Guideline, and comprised people with diverse knowledge, skills, experience, and perspectives, including members from both the autistic (autistic adults) and autism (e.g., family members, practitioners, researchers) communities. The Guideline was developed within an evidence-based practice framework, combining the best available research evidence, with evidence from clinical practice and the lived experience of autistic people and their families, and the preferences and unique context of each child and family. The Guideline Development Group undertook a range of research and community consultation activities, including systematic reviews of the research evidence, focus groups with members of the autistic and autism communities, and community and practitioner surveys. The information collected through these activities was systematically collated, analysed, and structured into a series of Recommendations to guide practice using an internationally accepted framework.
The Guideline has 84 Consensus-Based Recommendations that span the support pathway, including guiding principles, goal setting, selecting and planning supports, delivering supports, and the monitoring and safeguarding of supports. Recommendations are key elements of practice that must be followed for a practitioner to deliver evidence-based support. Recommendations are accompanied by Good Practice Points that provide critical context to each Recommendation, such as how a Recommendation should be implemented in clinical practice, or how it is applied to a specific population or under specific circumstances. Supporting evidence collected through the research and community consultations activities is presented for each Recommendation, and an Administration and Technical Report provides detailed information on the Guideline development process.
This is the first national Guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia. The Recommendations provide a framework through which evidence-based practice can be implemented across Australia. The next step will be for professional associations and individual practitioners to endorse and implement the Guideline; a process Autism CRC will support through a range of activities. It is recommended that this Guideline be updated within 5 years of publication.
Plain language summary
This Guideline explains to practitioners how to work with autistic children and their families in ways that are safe, effective, and desirable. This is a summary of the key messages.
Section 1: Guiding Principles
Practitioners should work in partnership with children and families, individualise supports, and respect the children’s human rights. Practitioners should be ethical, have appropriate qualifications, and use evidence to guide decisions. They should help children and families be confident in themselves, and to access the supports they need when they need them.
Section 2: Goal Setting
Practitioners should help children and families select goals that are helpful and meaningful to them. Goals should also consider each child’s family, and where the child and family live, learn, and play. Goals should be written down and understood by everyone.
Section 3: Selecting and planning supports
Practitioners should help children and families choose supports that are safe, effective, and desirable. Supports can help children develop new skills, help people around the child develop new skills, and help create more accessible and enjoyable environments. Practitioners who plan supports should be properly qualified and have relevant knowledge, skills, supervision, and experience. If a practitioner does not have these things, they should refer the child and family to other people who do.
Section 4: Delivering supports
Practitioners should help children and families make decisions about how supports are delivered. This includes choosing who will be involved, how and where they are delivered, and how much support is appropriate. Where another person helps deliver supports, they should be appropriate and supervised. Supports should be coordinated, to maximise benefits and minimise burden for children and families.
Section 5: Outcomes, quality, and safeguarding
Practitioners should work in ways that maximise benefits and minimise risks for children and their families. They should have a plan and processes in place to make sure the supports they provide are safe, of high quality, and desirable to children and families. Practitioners should monitor progress, and work with the child and family to make adjustments and stop when support is no longer needed and/or desired. They should respect each child and family for who they are, what they want, and what they need to uphold their human rights.