World’s first ‘living guideline’ for autism should be a go-to resource

The third edition of the Aotearoa New Zealand Autism Guideline: He Waka Huia Takiwātanga Rau provides advice on how to help autistic people live their lives fully and meaningfully.

It is intended for use by primary care practitioners, education professionals, service providers, policymakers, funders, specialists, carers, and autistic people/tāngata whaitakiwātanga and their families and whānau.

We’re proud of this document – the world’s first “living guideline” for autism. That means it will be regularly updated to reflect new evidence and be more responsive to the needs of autistic people. It includes the latest evidence-based research and is informed by the perspectives of autistic, Māori and Pacific peoples.

Development of this edition of the guideline has been proudly led by Whaikaha – Ministry of Disabled People, in partnership with Te Tāhuhu o te Mātauranga | Ministry of Education.

This new edition includes 308 “Recommendations” and “Good Practice Points”. These include the most recent living guideline updates and some important changes to language and terminology.

These changes reflect autism being part of a person’s identity and a natural neurological variation, not an impairment. This highlights the strengths of autism while acknowledging its challenges.

Consistent with Te Tiriti o Waitangi and the Ministry of Health’s Whāia Te Ao Mārama 2018 to 2022: The Māori Disability Action Plan (tiny.one/MaoriDisPlan), te ao Māori perspectives and te reo Māori are more prominent.

The term takiwātanga, meaning “in his/her/their own time and space”, is used throughout the guideline to recognise autistic ways of being. Enabling Good Lives principles are also included (enablinggoodlives.co.nz).

It’s worth highlighting one significant new recommendation – Good Practice Point 4.3.13. It provides guidance on choosing a supportive approach, strategy, practitioner or therapist to ensure principles for ethical practice are followed.

Accept the person as authentically autistic. Respect neurodivergence as difference that does not need to be cured.

Be strengths-based. Identify and work with an autistic person’s strengths, abilities and potential.

Be person-centred. Focus on the needs and autonomy of the autistic person. Consider their culture, needs and choices in identifying an approach and its goals.

Avoid encouraging masking of a person’s autism/takiwātanga. Do not target reducing behaviours (eg, “stims”), which are not harmful or a barrier to desired goals (eg, do not demand eye contact).

Understand that behaviour is communication, and where harmful or “challenging”, focus on understanding its purpose and achieving positive change through alternative ways.

Identify, encourage and facilitate access to use of supports, modifications and adjustments (rather than getting the autistic person to do all the changing).

Presume competence and potential. Assume an autistic person has the capacity to think, learn and understand, regardless of how they communicate.

Provide access to communication modalities that facilitate an autistic person’s ability to process and express (eg, augmentative and alternative communication devices, signing, quiet space).

Do not use seclusion and restraint, or aversive practices.

Be collaborative. Work alongside supportive family, carers, and professional providers, therapists and educators.

Regularly assess consent. Look for signs of disinterest, disengagement or distress, and consider reducing intensity, taking a break, or ceasing an approach altogether.

Monitor progress regularly.

Commit to the dignity, civil liberties and human rights of people served. Comply with the United Nations Convention on the Rights of Persons with Disabilities (2008) and United Nations Convention on the Rights of the Child (1990).

The first edition of the guideline was published in 2008. At the time, it was ground-breaking – it was the most comprehensive autism guideline in the world, considering an allof-life approach, and providing medical, educational and social perspectives.

The guideline is updated regularly through a living guideline process, in the form of annual supplementary papers. This ensures the guideline continues to meet the needs of autistic people and those who support and provide services for them.

Every year, a multidisciplinary advisory panel called the Living Guideline Group (LGG) prioritise a topic for update. A systematic literature review is then undertaken to provide a critical synthesis of research published since 2004. The LGG consider the completed systematic review and report on any implications for the guideline. A comprehensive supplementary paper describing the systematic review and LGG decisions, including new recommendations, is prepared for each updated topic. These are published annually on the Whaikaha website. For example, a paper on supports in tertiary education was published in November 2022.

The third edition incorporates the recommendations from all 13 published supplementary papers, with proposed guideline revisions approved by the LGG.

We look forward to this document being used as a “go-to” resource to help professionals such as doctors, teachers and therapists ensure they are providing excellent care and support for autistic individuals and their whānau.

It can also be a tool to empower autistic people to get their needs and rights met, and to guide service providers and funders in implementing the most appropriate approaches and strategies.

Andrew Marshall is co-chair of the Living Guideline Group and a developmental paediatrician at the Child Development Service, Puketiro Centre, Porirua