This Guideline provides a set of Consensus-Based Recommendations for supporting the learning, participation, and wellbeing of autistic children and their families in Australia. The publication of this Guideline is an important step towards ensuring that all autistic children and their families in Australia receive safe, effective, and desirable supports. The next steps towards this goal involve the dissemination and implementation of the Guideline, its endorsement by peak clinical and consumer bodies, and a range of key clinical, research, and policy activities. These are presented here.
Dissemination and implementation of the Guideline
Following the publication of the Guideline, the Autism CRC will fund and undertake activities to support the dissemination of the Guideline and implementation of the Recommendations. It is envisaged that dissemination activities will include traditional and social media awareness campaigns, email distributions, the development of web resources, and the delivery of workshops and seminars. It is envisaged that implementation activities will include the development of quick reference guides (e.g., infographics, summary guides, videos, case studies, child-friendly version of the Guideline) and other resources (e.g., clinical training resources for students, and continuing professional development courses). It is anticipated that these activities will be conducted in close consultation with relevant professional colleges and societies and consumer representative organisations. The Dissemination and Implementation Plan is provided in further detail as a separate document to this Guideline.
The Guideline Recommendations are relevant to any jurisdiction that is involved in the funding or provision of supports and other services to autistic children aged 12 years or younger. Within the Australian context, the Recommendations have particular relevance to the National Disability Insurance Scheme (NDIS), and how this scheme can incentivise and regulate the delivery of evidence-based supports to autistic children and their families.
Endorsement of the Guideline
Following the publication of the Guideline, Autism CRC will seek endorsement of the Guideline from the peak clinical and consumer bodies represented on the Reference Group. These include the Australian Autism Alliance, Australian Association of Special Education, Australasian Society for Autism Research, Autism Awareness Australia, Autistic Self Advocacy Network – Australia and New Zealand, Australian Physiotherapy Association, Australian Psychological Society, Federation of Ethnic Communities’ Council of Australia, National Aboriginal Community Controlled Health Organisation, National Rural Health Alliance, Neurodevelopmental and Behavioural Paediatrics Society of Australasia, Occupational Therapy Australia, Reimagine Australia, and Speech Pathology Australia. Autism CRC will welcome endorsement of the Guideline by other peak clinical and consumer bodies that seek to support autistic children and their families.
Future directions for research
Evaluation of Guideline
It is important that an ongoing evaluation process is in place to understand barriers and facilitators to Guideline dissemination and implementation, to monitor whether the Guideline is meeting the defined objectives, and to inform future Guideline updates.
The Guideline Recommendations should be reviewed and updated on a regular basis to respond to new evidence from research, clinical practice, or changes in community preferences and priorities. Recommendation 38, which is directly informed by the findings of the umbrella review (Appendix C), will be particularly affected by the publication of new high-quality systematic reviews that meet inclusion criteria. These systematic reviews will include new research, co-designed with autistic people, that will likely lead to new and improved ways of conceptualising, designing, delivering, and evaluating supports for autistic children and their families. The first update of the Guideline should take place within 5 years of publication of this original version. A suitable approach to updating the Guideline would involve reconstituting a Guideline Development Group to update the systematic reviews (restricted to evidence published since the previous systematic reviews), conduct new community consultation activities, and consider whether any of the Recommendations require amending or updating.
The research activities identified key knowledge gaps that require urgent research attention. These include:
- Quality of life outcomes: A shared goal of all supports is to increase a child’s and family’s quality of life. However, a key finding from the umbrella review was the primary focus of the extant literature on the effects of different supports on development and learning outcomes, and not on outcomes that may be more directly associated with quality of life, such as participation and wellbeing. Understanding the impact of different supports on quality of life, and whether any improvements are sustained over time, are critical areas of focus for future research.
- Adverse effects: The umbrella review also highlighted a lack of consideration of potentially adverse effects in clinical trials of different supports. The lack of reporting on adverse effects may reflect an assumption that non-pharmacological supports carry a negligible risk of harm. However, this is an assumption that requires constant testing in order to meet the ethical obligations of clinical research. Explicit collection and reporting of data relating to adverse effects is a critical and urgent recommendation for further research in this area.
- Cultural diversity: The majority of research on different supports to date has taken place in North America, Europe, and Australia, which have populations with a majority White/Caucasian background. The lack of cultural diversity in this research area is particularly salient to the provision of services to Australia’s First Peoples: Aboriginal and Torres Strait Islander Peoples and their communities. A recent report highlighted the stark absence of research in this area, and the urgent need to better understand the life experiences of autistic individuals in these communities (Lilley, Sedgwick & Pellicano, 2019). A community-directed research strategy that identifies the needs, priorities, and preferences of Aboriginal and Torres Strait Islander Peoples and their communities is critical to meeting the obligation for ethical clinical practice in Australia.
- Quality of evidence: A common theme identified through the research and community consultation activities was the low quality of research evidence that underpins many supports accessed by autistic children and families (Whitehouse et al., 2020). This is highlighted in Appendix C, where the blank cells represent evidence that could not be obtained through the umbrella review. There is an important and urgent need for more high-quality co-designed clinical trials (adhering to the standards of the CONsolidated Standards Of Reporting Trials [CONSORT]; Begg et al., 1996) to be conducted in this area, which in turn, are summarised in high-quality meta-analyses (adhering to the standards of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA]; Page et al., 2021). Clinical trials that systematically examine different support characteristics, or compare responses to supports across children with different characteristics, will be particularly critical in developing a knowledge base that can inform the provision of individualised supports.
- Co-production of supports and associated research: Central to the Recommendations in this Guideline is the right of autistic people to have their views and voices heard, respected, and valued. This right extends to the co-design of supports with autistic people, and also the co-production of research that tests the efficacy, safety, and acceptability of these supports. Grounding research in the lived experience of the autistic community provides the greatest opportunity for research to generate outcomes that are meaningful to, and have a positive impact on, the lives of autistic children and their families. The Autism CRC Participatory and Inclusive Research Practice Guides provide important guidance in this area (den Houting, 2021).
Future directions for clinical practice
It is important that practitioners and other professionals undertake appropriate training to ensure they have the knowledge and skills to implement the Guideline within their service. Central to meeting this aim is having clinical training programs (through universities and other training organisations) that meet the requirements of the Recommendations enclosed in the Guideline, along with continuing professional development programs (through professional societies) that engage practitioners in life-long learning.
Communities of practice
Communities of practice connect practitioners in a similar area with the aim of deepening their collective knowledge and expertise in that area through ongoing interaction. Communities of practice help practitioners engage in reflective practice and life-long learning, and also provide connections to other practitioners who may support the clinical supervision and mentoring requirements of the Guideline Recommendations. The development of communities of practice centred around the Guideline Recommendations will be a key facilitator for the implementation of high-quality practice across Australia.
Future directions for policymakers
Incentivise and regulate Guideline adherence
The Recommendations included in this Guideline have been developed through an evidence-based practice framework, combining the best available research evidence, with insights from clinical practice, and the preferences and priorities of children and their families. Government agencies and professional societies should create and maintain frameworks that incentivise and/or regulate the adherence to the full suite of Recommendations in this Guideline as a way to ensure that all autistic children and their families receive safe, effective, and desirable supports.