Introduction

Background

All children deserve a healthy and happy start to life, surrounded by people who love, value, and support them, within environments that are conducive to their learning, participation, and wellbeing. Children have rights (United Nations, 1989; 2006): to learn in ways that fully develop their personalities, talents, and abilities; to have their culture, dignity and safety respected and preserved; and to have their views and voices heard, no matter how they communicate. Inherent in these rights is the requirement that adults and organisations responsible for children should do what is best for each child, and that governments should ensure these rights are upheld at all times.

This Guideline is about the rights of autistic children and their families to access safe, effective, and desirable supports during childhood. Autism affects the way a person understands and interacts with other people and the world around them. From a diagnostic perspective, the term Autism Spectrum Disorder (herein referred to as autism) is the collective term for a group of neurodevelopmental conditions characterised primarily by differences in social-communication skills, and the presence of repetitive behaviours, intense or focussed interests and/or sensory differences (American Psychiatric Association, 2013). The behavioural features of autism are often present before 3 years of age, but may not become apparent until the school years or later in life, as social and cognitive demands increase. Many autistic people experience co-occurring conditions such as language and learning difficulties, and a range of medical conditions.

Many autistic people view autism as intrinsic to their identity and sense of being (Cooper et al., 2017). However, there is broad acknowledgment from autistic people, family members, and the wider community that autistic people can face substantial barriers to their learning, participation, and wellbeing. These barriers arise from a combination of developmental differences inherent to autism, and societal factors such as a lack of accessible environments. The provision of supports during childhood can help autistic children acquire skills, increase child and family wellbeing, minimise environmental barriers, and maximise each child’s participation in individually meaningful life activities. These supports are typically non-pharmacological (i.e., not primarily based on medication) and are often known by a variety of names, including interventions, therapies, programs, and services.

There is a strong need to develop a nationally consistent approach to supporting autistic children and their families in Australia (Whitehouse et al., 2020). First, a large number of supports are offered to children and families, and there is considerable variability in their theoretical premise, delivery characteristics (e.g., by whom, in what settings, in what amount), and evidence for safety and effectiveness. Second, while it is recognised that supports should be individualised to meet the strengths, preferences, and support needs of each child and their family, there is little guidance for practitioners as to how this should occur. Third, community understanding of autism and views about the nature and delivery of support are evolving, driven in large part by the self-advocacy of autistic people and advocacy by parents and significant others. It is imperative that this evolving understanding is reflected in the selecting, planning, delivery, monitoring, and safeguarding of supports provided to children and their families.

In 2021, the Autism CRC commissioned the development of Australia’s first Guideline for supporting the development and participation of autistic children and their families (the ‘Guideline’). Andrew Whitehouse and David Trembath were requested to chair this process, in collaboration with a Guideline Development Group comprising Gary Allen, Katharine Annear, Valsamma Eapen, Jessica Feary, Emma Goodall, Sarah Pillar, Teresa Pilbeam, Felicity Rose, Nancy Sadka, Natalie Silove, Rhylee Sulek, Kandice Varcin, and Hannah Waddington.

The Recommendations in the Guideline were developed within an evidence-based practice framework, combining the best available research evidence; with evidence from clinical practice; and evidence relating to the experiences, preferences, and priorities of children and their families (Sackett, Richardson, Rosenberg, & Haynes, 2000). The Guideline was developed according to the National Health and Medical Research Council (NHMRC, 2016) Guidelines for Guidelines manual, and used the internationally recognised Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method (Schünemann et al., 2013) for moving from questions, to evidence, and then recommendations. Each Recommendation in this Guideline reflects multiple converging sources of evidence from the autistic and autism communities, gathered through systematic reviews of the literature and extensive community consultation. A glossary of key terms used in this Guideline is provided as Appendix A.

A Guideline for the provision of supports in Australia must ensure that recommendations are directly underpinned by evidence for safety and effectiveness, while also being flexible enough to account for the unique aspects of the child and family, and the settings and contexts in which they live. Autistic children vary widely in their strengths, behavioural characteristics, support needs, and preferences, and it is recognised that there is no one way to support all aspects of learning, participation, and wellbeing for all children. There is also considerable variability in the settings and contexts through which supports can be provided. By drawing on the synthesis evidence from systematic reviews, extensive community consultation, and consensus agreement amongst practitioners regarding good practice, the Recommendations provide guidance to practitioners that is appropriate, relevant, and meaningful in the Australian context.

Purpose and objectives

This Guideline was developed to provide practitioners with an evidence-based practice framework that facilitates the safe and effective provision of non-pharmacological supports to autistic children aged 12 years or younger and their families in Australia. The specific objectives were to develop a Guideline that:

1. Describes an evidence-based practice framework for providing supports to autistic children aged 12 years or younger and their families.
2. Contains sufficient flexibility to apply to all children regardless of their age, gender, communication skills, intellectual capacity, cultural or language background, socio-economic status, or where they live in Australia.
3. Is feasible for clinical practitioners to implement across the full breadth of clinical or community settings in Australia.
4. Meets the needs and expectations of children and families receiving the supports.

Scope

The scope of the Guideline was determined prior to the commencement of the research and community consultation activities. The scope of the Guideline is provided in Table 1.

This Guideline focuses on practitioners working within community and clinical settings. These practitioners are typically engaged by children and families through publicly-funded (e.g., National Disability Insurance Scheme, Medicare) or privately-funded (e.g., health insurance, self-funding) means.

Early childhood, primary, and secondary education plays a critical role in the learning, participation and wellbeing of autistic children and their families. The Recommendations and Good Practice Points within this Guideline emphasise the importance of linking supports and other connections between clinical, community and educational settings. However, it was beyond the scope of the current Guideline to develop Recommendations specifically for teachers and other educators (e.g., early childhood educators) whose role is to care for children and/or support their education as employees within early childhood, primary, and secondary education services (e.g., childcare, school). The rationale for limiting the scope was to acknowledge that additional considerations may be required in developing (e.g., ensuring appropriate consultation) and implementing (e.g., ensuring alignment with standards, regulations, frameworks, and pedagogy) a set of Recommendations that are directly relevant to teachers and other educators working in education settings.

It is acknowledged that delineating between people (e.g., practitioners, teachers, and other educators) and settings (e.g., education versus other community settings) is often imprecise, given that organisations may serve multiple functions (e.g., provide early childhood education as well as therapies and supports) and people often have multiple qualifications, roles, and workplaces. It is also acknowledged that teachers and other educators may find the Recommendations relevant to their practice. The scope of this Guideline does not prohibit teachers and other educators from adopting the Recommendations presented in this Guideline: it simply ensures that readers are fully aware of the scope and methodology used to arrive at the Recommendations.

Target users

The primary target users of this Guideline are practitioners working in Australia who are involved in the selecting, planning, delivery, and/or monitoring of supports for autistic children and their families. These include, but are not limited to, allied health and medical practitioners.

Secondary target users of this Guideline include the following groups:

• Autistic children and their families can use this Guideline to understand an evidence-based practice framework for accessing and receiving supports.
• Service providers can use this Guideline to align resource allocation within an evidence-based practice framework.
• Early childhood, primary school, and secondary school educators can use this Guideline to set expectations regarding how practitioners who provide supports in education settings should operate.
• Australian training providers, including peak bodies and tertiary education institutions, can use this Guideline to tailor clinical training resources, courses, and qualifications to ensure practitioners achieve the learning outcomes required for the selecting, planning, delivery, and monitoring of supports.
• Governmental bodies can use this Guideline to make evidence-based policy decisions regarding funding and provision of supports, based on consensus-based recommendations that are relevant to the Australian autistic and autism communities.