Future directions

This Guideline provides an updated set of Consensus-Based Recommendations for assessment and diagnosis of autism in Australia. These Recommendations are relevant to any jurisdiction that is involved in the funding or provision of assessment and diagnostic services related to autism. The next steps are to support the use of the updated Guideline to inform policy and practice, and evaluate its use and impact in preparation for future updating.

Dissemination and implementation of the Guideline

Following the publication of the Guideline, Autism CRC will undertake activities to support the dissemination of the updated 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 anticipated that these activities will be conducted in close consultation with relevant professional colleges and societies and consumer representative organisations.

Endorsement of the Guideline

It is important that national and state-based government departments (e.g., education, disability and health), along with service providers, consider endorsing the Guideline as a minimum clinical standard for autism assessment and diagnosis. In addition, it is important for national peak bodies to consider endorsement of the Guideline to ensure its uptake in clinical practice. Following the publication of the Guideline, Autism CRC will encourage adoption, and where relevant endorsement, of the updated Guideline from the peak clinical and consumer bodies represented on the Reference Group.

Future directions for research

Evaluation of the Guideline

The Guideline, and resources that support its implementation, should continue to be evaluated. Key questions relate to feasibility, acceptability, affordability, use by practitioners, the effect on their practice, and the effect on their clients. This information can inform current and future implementation efforts, as well as future updates of the Guideline.

Guideline update

The Guideline Recommendations should be reviewed and updated on a regular basis to respond to new evidence from research, clinical practice, and changes in community preferences and priorities. The next update should be within 5 years of publication of this current update, and continue to employ a methodology that meets requirements for approval by the National Health and Medical Research Council. Given there are now two Guidelines to inform professional practice when working with autistic people in Australia, and the potential for more in the future, it is important that the processes for updating and implementing Guidelines are coordinated, with the view to creating seamless guidance for practitioners across all aspects of the assessment and diagnostic process.

Evidence gaps

The research activities identified key knowledge gaps that require urgent research attention. These include:

Competency framework: Research is needed to explore the development of a competency-based framework for assessment and diagnosis of autism in Australia. This could include examining what competencies are required, how they could be assessed, and how use of the framework could be regulated; as well as studies examining the relative strengths of models employing such a framework compared to existing Recommendations with respect to supporting timely, accurate, accessible, and equitable diagnosis.

Complex needs: It is important that tools are developed to support early and accurate diagnosis of autism in people with complex needs, including when individuals do not use speech to communicate, have intellectual disability, and/or have other co-occurring health and developmental conditions. Furthermore, recognising that attending assessment sessions can be particularly challenging for individuals with complex needs and their families, it is important that coordinated models of assessment are developed to minimise the number and duration of sessions, while still addressing all relevant health needs (e.g., medical, allied health, dental).

Culturally-affirming practice: It is important to understand how autism is conceptualised and talked about in culturally diverse communities – including Aboriginal and Torres Strait Islander Peoples – to inform the way autism is discussed, assessed, and diagnosed. Furthermore, it is important that culturally safe, relevant, and appropriate assessment tools and practices are developed, including standardised screeners and assessment tools in order to be accurate and culturally-affirming.

Gender diversity: It is important to better understand the characteristics and experiences of autism among gender-diverse individuals; the appropriateness of existing assessment and diagnostic criteria, tools, and practices; and where relevant to improve these.

Neurodiversity-affirming practice: The Guideline recommends that assessment and diagnostic practices should be neurodiversity-affirming. However, it is recognised that the concept is relatively new, and research is needed to achieve consistency in how neurodiversity-affirming practice is defined and to support its use and evaluation in clinical practice.

Rural and remote practice: It is important that the experiences of people seeking to access assessment and diagnostic services in, and from, rural and remote locations be better understood. This includes research to identify barriers and facilitators to timely, accurate, appropriate, and affordable services, and to develop solutions to improve access where required.

Telehealth: While there is growing evidence for the potential benefits of telehealth, further research is needed to understand the barriers and facilitators to its use in various aspects of the assessment and diagnostic process.

Co-production of assessment tools and associated research

It is important that the development of new assessment tools and models of service delivery is informed by the lived expertise of autistic people, of all ages and with different levels of support needs. Parents, family, and family-like people are also important partners in research to improve assessment and diagnostic services, including in relation to services for young children and people of all ages with complex needs.

Future directions for practice

Professional associations and peak bodies are encouraged to continue to endorse the Guideline and encourage their members’ adherence to the Recommendations. Autism CRC has produced a range of resources to support implementation of the original Guideline, including an online continuing professional development course, quick reference guides, referral and report templates, and a university resource for training future health practitioners. These resources will be updated to reflect the updated Recommendations, where relevant.

Local clinical training. It is important that clinicians and other professionals undertake training to ensure they have the appropriate knowledge and skills to implement the Guideline within their service. This may involve tailoring the available resources to meet the needs of their local community and type of service, and will help ensure ongoing capacity within all communities (including regional and remote communities). Practitioners should also consider availing themselves of the increasing opportunities for training developed and delivered by, and in partnership with, autistic people and people with lived experience of autism including parents and caregivers.

Clinical networks. It is important to develop in-person or online clinical networks to facilitate the training of new members of an assessment team and maintain required expertise and mentoring systems. This is in recognition that peer-to-peer learning is critical to developing and maintaining high levels of clinical skills, in particular through peer observation, peer supervision and peer mentoring. One model of such a clinical network is the Western Australian Autism Diagnosticians’ Forum (http://www.waadf.org.au).

Future directions for policymakers

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. For Government, a key challenge is to make Comprehensive Needs Assessment and Diagnostic Evaluation more accessible, affordable, and equitable for all Australians. The community consultation process that informed the updated Recommendations, yielded extensive evidence of shortcomings in current service provision, that have reportedly led to missed, delayed, and inaccurate diagnoses, and often poor experiences for those seeking an assessment.