Aotearoa New Zealand Autism Guideline: Third Edition

Who is the Guideline for?

The Guideline is for autistic people (tangata whaitakiwātanga), their whānau, health and disability professionals, community supporters, employers, policy advisers, and anyone involved in education – from early childhood to tertiary.

Most of the recommendations relate to improving the practices of people who provide support and services to people on the autism spectrum. However, because the guidelines emphasise the importance of providing guidance and support in understanding autism to the community, they will be of interest to many people across Aotearoa.

Why is the Guideline important?

The Guideline is an opportunity to better understand how best to support autistic people and their families. It also provides a framework to improve autism/takiwātanga services based on robust and reliable information.

The Guideline collates the best available information about effective ways to support autistic people into one volume. Readers do not have to seek out information from multiple sources, nor to try to make sense of sometimes conflicting claims.

The Guideline does not claim to cover every ‘intervention’ related to autism. It includes advice about well-researched approaches, therapies, and supports which have been proven to work, and also discourages use of those proven not to work or which cause harm.

The Guideline embraces autistic people as valued members of our community whose neurodivergence brings strengths and enriches our society. In this new edition, the Guideline’s language has been carefully revised in collaboration with autistic people. In particular, it avoids describing autism in ways that pathologise the condition, or frames autism in a negative way.

What is a living guideline?

The Guideline is the world’s first ‘living guideline’ in autism. Being a living guideline means there are regular updates undertaken in areas where new, significant research has emerged. Updates within the living guideline process are required when the recommendations in the guideline are no longer valid in view of changing research evidence.

The objective of a living guideline is to be more responsive to the needs of the people for whom it has been written. It is not only alive in the sense that the recommendations are kept up to date, it is alive because it has real meaning to those who use it.

Every year since 2009, research relating to a topic area is critically reviewed. This review is then considered by an advisory panel (the Living Guideline Group) to inform the revision and development of new recommendations.

This expert panel includes clinicians, educators, researchers, and people with lived experience. The review and the panel’s decisions are published as Supplementary Papers which are listed at the bottom of this page. Recommendations from the first 13 completed topics have been incorporated into the Guideline’s third edition.

• INSIGHT Research leads the living guideline process and undertakes the systematic reviews independently on behalf of Whaikaha - Ministry of Disabled People. If you are interested in hearing more about this work/mahi, you can contact the Takiwātanga/Autism Living Guideline Manager through INSIGHT Research, or email us at contact@whaikaha.govt.nz.

Information or advice that differs from the Guideline

If the information in the Guideline contradicts advice or information you've received from other sources, you should:

• Contact your health, child development, education, mental health, or other service provider as appropriate.
• Altogether Autism external URL , an organisation that provides information about autism/takiwātanga to the sector on behalf of Whaikaha - Ministry of Disabled People.

Working with Māori and Pacific people

When working with autistic people/tangata whaitakiwātanga who identify as Māori or Pacific people, it is helpful to:

• Appoint a kaiarahi or other appropriate guide.
• Develop and distribute all information packages about autism/takiwātanga in a culturally appropriate format
• Develop a strategy to improve the cultural competency of the workforce to acquire knowledge and understanding of cultural values and world views and appropriately apply this to their work.

Our expectations for the Guideline

The Guideline provides a standard for service providers to hold themselves up to in their interactions with autistic people, as well as a standard for autistic people and their supporters to measure the actions of professionals against.

We expect people to use the Guideline to improve the lives of autistic people/tangata whaitakiwātanga so they can thrive. We expect professionals to use it to improve their practice, their communication, and their relationships with autistic people. We expect autistic people and their supporters will use it to keep themselves up to date about autism within the Aotearoa New Zealand context.

Next Steps

Planning is underway towards implementation of the Guideline including the possible development and co-design of new resources such as handbooks that are more accessible and targeted to different audiences such as clinicians, educators, and family and whānau.

Community engagement and consultation with the autism community and stakeholders will be the first step. It’s important that autistic people, clinicians, educators, policymakers, carers, Māori and Pacific peoples, and society generally are brought along in this journey.