Background to the ASD Guideline

The Autism Spectrum Disorder (ASD) Guideline provides evidence-based information for health, disability and education professionals as well as social service agencies, for the provision of services for people with ASD and their families.

The ASD Guideline is a groundbreaking example of health, education and disability service leaders working together for the benefit of people with ASD. The development of an evidence-based Guideline on ASD has been jointly sponsored by the Ministry of Education and Ministry of Health.

Purpose

Evidence-based guidelines are produced to assist health professionals, educators and consumers make decisions about education, support and care in specific circumstances. Research has shown that if properly developed, communicated and implemented, guidelines can improve outcomes.

The ASD Guideline is intended to provide guidance on ASD in both children and adults in New Zealand. The ASD Guideline is an evidence-based summary that covers the identification, diagnosis, ongoing assessment and interventions and services for people with ASD. It seeks to provide the best evidence currently available to help with decision-making that will improve health, educational and social outcomes.

The ASD Guideline is intended for use by primary care practitioners, specialists, education professionals, policy makers, funders, parents, carers, and any others who make provision for individuals with ASD.

Background

ASD is a life-long developmental disability, which can affect communication, social interaction and behaviour. Its form and severity can vary from person to person, but people with ASD share some difficulty in making sense of their world. A broad range of pervasive developmental disorders, including Asperger Syndrome, are now considered to be part of the autistic spectrum.

In 1998, the Government commissioned a review of autism services across key sectors now known as the Curry Report. It was pivotal in identifying gaps in services and made a number of recommendations to improve the quality of ASD-related services. Key issues identified in the review included a lack of coordinated services and cross government leadership difficulties. 

As a result the Ministries of Health, Education and Department of Child, Youth and Family (now Oranga Tamariki – Ministry for Children) set up a cross government officials group to provide oversight of policy and services for individuals with ASD. This group recognised the need for an evidence-based Guideline. An ASD Guideline Steering Group was also set up to help guide the work of the project team.

ASD Guideline development process

The development of the ASD Guideline has taken a ‘whole of life’ approach and has been developed through inter-sector collaboration. 

A wide range of experts and professionals have participated in the development of the ASD Guideline including representation from families of children and adolescents and adults with ASD, Child Psychiatrists, Psychologists, Occupational Therapists, Speech Language Therapists, Nurses, Paediatricians, educational researchers, education practice advisors, Educational Psychologists, the New Zealand Guidelines Group (NZGG), disability academics, Māori advisors, Pacific Advisors, Needs Assessment and Service Coordination (NASC) services, disability service providers and primary healthcare physicians.

 The ASD Guideline was developed in three separate sections by three workstreams and experienced Māori and Pacific researchers. The three workstreams, each with a particular expertise, were set up to represent different aspects of ASD.

  • The Paediatric Society led workstream one and addressed assessment and diagnosis in children and pharmacotherapy in children.
  • The Ministry of Education led workstream two and addressed educational issues and training issues for professionals and parents.
  • The Ministry of Health led workstream three and addressed issues for older children and adults, including diagnosis, assessment and interventions, as well as support across the age spectrum.

All the completed sections were then merged and integrated into one overall evidence-based ASD Guideline.

Format of the ASD Guideline

The ASD Guideline is a summary of the best evidence currently available. Where no evidence is available, but guidance is needed, recommendations for best practice have been developed through a systematic consensus process.

The ASD Guideline is divided into five parts, with chapters on Māori and Pacific People’s perspectives.

  • Part 1 covers the identification and initial assessment of children, young people and adults with ASD.
  • Part 2 focuses on how best to provide support to people who share their lives with individuals who have ASD.
  • Part 3 covers educational principles and interventions for children and young people growing up with ASD. It also covers education sector organisation and management and professional development requirements.
  • Part 4 covers the benefits and risks of pharmacological and other types of medical and biomedical therapies for symptom control in individuals with ASD.
  • Part 5 focuses on adolescents and adults with ASD and looks at the kinds of supports that they need, covering a variety of aspects from general health needs to dealing with the criminal justice system.

Two additional chapters cover the perspectives and experiences of Māori and Pacific people with ASD and explore issues of information needs, diagnosis, assessment, support, access, services and treatment decisions for these populations.

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