National Guideline for Supporting Autistic Children and their Families | MyCareSpace

National Guideline for Supporting Autistic Children & their Families

Autism CRC reporting on autism research

A draft version of the National Guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia is now available for community feedback.

This guideline has been developed over 9 months by the 15 members of the Guideline Development Group.

The Guideline will support families to:

  1. make informed choices when accessing services, and
  2. provide professionals with a set of recommendations to guide ethical and effective service delivery.

The recommendations will be based on the best available research evidence and a comprehensive community consultation process.

The Draft National Guideline explains the context for the guideline and 84 Recommendations and associated Good Practice Points.

Read the full Draft Guidelines Document

Read the Easy to Read version of the Guidelines Document

All members of the autistic and autism community are invited to provide feedback. Community consultation closes at 5pm (AEST) on August 29. 

Have your say here

 

84 Recommendations

Don't have time to read the whole guideline? This is a complete list of Recommendations included in the Guideline.

NOTE: It is critical that Recommendations are read in the context of the accompanying Good Practice Points that are described in the body of the Guideline.

 

Section 1: Guiding Principles

What guiding principles should be followed when providing supports to autistic children and their families?

Recommendation 1

Strength of Recommendation: Strong
Child and family-centred: Supports should be child and family-centred, where individual goals, preferences, and circumstances are respected, valued, and supported. 

 

Recommendation 2

Strength of Recommendation: Strong
Individualised: Supports should be individualised for each child and family. 

 

Recommendation 3

Strength of Recommendation: Strong
Strengths-focused: Supports should build on each child’s and family’s strengths.

 

Recommendation 4

Strength of Recommendation: Strong
Holistic: Supports should be holistic in terms of the goals that are targeted and the way they are achieved, considering all aspects of the child, family, and their community.

 

Recommendation 5

Strength of Recommendation: Strong
Honour childhood: Supports should honour the goals and activities of childhood including play, relationships, and personal discovery.

 

Recommendation 6

Strength of Recommendation: Strong
Foundation for the future: Supports should lay the foundation for a positive future, including optimum health, choice, learning, participation, and wellbeing.

 

Recommendation 7

Strength of Recommendation: Strong
Ethical: Supports must be ethical to protect the rights of children and families.

 

Recommendation 8

Strength of Recommendation: Strong
Culturally safe: Practitioners should acknowledge and respect the values, knowledge, preferences and cultural perspectives of the child and family, and reflect on their own cultural knowledge and competency in delivering services.

 

Recommendation 9

Strength of Recommendation: N/A
Respecting Australia's First Nations Peoples: Supports should be culturally safe for Aboriginal and Torres Strait Islander Peoples, built on an acknowledgment of the barriers to accessing supports that they may experience, an understanding of current and historical truths and their enduring impact; and respect for deep connection to Country, language, customs, and traditions.

 

Recommendation 10

Strength of Recommendation: Strong
Evidence-based: Supports should reflect the best available evidence from research, evidence from clinical practice, and the preferences and unique context of each child and family.

 

Recommendation 11

Strength of Recommendation: Strong
Assent (children): Each child has the right to say no to supports and their assent (expression of approval) should be sought and respected, whether they communicate using words or in other ways.

 

Recommendation 12

Strength of Recommendation: Strong
Informed consent (parents): Parents should have the information they need to make informed choices about supports and provide consent for any supports they or their child receives.

 

Recommendation 13

Strength of Recommendation: Conditional
Qualified practitioners: Practitioners should have relevant qualifications, be regulated, work within their scope of practice, and engage in continuing professional development.

 

Recommendation 14

Strength of Recommendation: Strong
Neurodiversity-affirming: Supports should be neurodiversity-affirming, embracing each child’s unique understanding of other people and the world around them, and not seek to ‘cure’ autism.

 

Recommendation 15

Strength of Recommendation: Strong
Parent and family affirming: Supports should uphold the family’s autonomy in raising their child, and ensure the natural roles of children, parents, siblings, and other family members are affirmed and preserved.

 

Recommendation 16

Strength of Recommendation: Conditional
Timely and accessible: Each child and family should be able to access the supports they need, when they need them, and in ways they desire, regardless of who they are, where they live, or how much money they have.

 

Recommendation 17

Strength of Recommendation: Conditional
Coordinated: Practitioners should engage in open and regular communication with other practitioners to ensure supports are coordinated.

 

Section 2: Goal Setting

What are appropriate goals for supporting children and families?

Recommendation 18

Strength of Recommendation: Strong
Practitioners should consider goals that help the child acquire skills that promote their learning, participation and wellbeing.

 

Recommendation 19

Strength of Recommendation: Strong
Practitioners should consider goals that empower parents and families to support and advocate for their child, and promote their own and their family’s wellbeing.

 

Recommendation 20

Strength of Recommendation: Strong
Practitioners should consider goals that create safe and accessible environments that support learning, participation, and wellbeing.

 

Recommendation 21

Strength of Recommendation: Strong
Goals should be neurodiversity-affirming.

 

How should goals be selected?

Recommendation 22

Strength of Recommendation: Strong
The child and parents should be involved in setting goals, as well as other people, when relevant.

 

Recommendation 23

Strength of Recommendation: Strong
In recommending goals, practitioners should consider the unique aspects of the child and the contexts in which they live.

 

Recommendation 24

Strength of Recommendation: Strong
In recommending goals, practitioners should consider the unique aspects of the family and the contexts in which they live.

 

Recommendation 25

Strength of Recommendation: Strong
Practitioners should have a strong rationale for why a goal is recommended, which considers the potential benefits and risks for the child and family.

 

Recommendation 26

Strength of Recommendation: Conditional
Practitioners should ensure that the agreed goals are shared in a way that is informative, understandable, and meaningful to the child and the family.

 

Section 3: Selecting and planning supports

What types of supports might be relevant to children and their families?

Recommendation 27

Strength of Recommendation: Strong
Supports should help the child communicate with a variety of people in everyday contexts, for a variety of reasons, and in ways that they desire.

 

Recommendation 28

Strength of Recommendation: Strong
Supports should meet the child’s sensory needs across activities, interactions, and settings.

 

Recommendation 29

Strength of Recommendation: Strong
Supports should help the child develop their cognitive skills as the foundation for learning about themselves, other people, and the world around them.

 

Recommendation 30

Strength of Recommendation: Strong
Supports should help the child develop social-emotional skills, supporting them to understand, express, and regulate their emotions as a foundational skill for learning, participation, and wellbeing.

 

Recommendation 31

Strength of Recommendation: Strong
Supports should help the child develop motor skills, maximising their ability to move in functional ways that they desire.

 

Recommendation 32

Strength of Recommendation: Strong
Supports should help the child to acquire academic skills that maximise their learning and participation in educational settings.

 

Recommendation 33

Strength of Recommendation: Strong
Supports should help children to acquire skills that are relevant to their participation in meaningful daily activities.

 

Recommendation 34

Strength of Recommendation: Strong
Supports should empower families in raising the child and promote the wellbeing of the child and family.

 

Recommendation 35

Strength of Recommendation: Strong
Supports should lead to the creation of accessible environments that support the child’s learning, participation, and wellbeing.

 

How should supports be selected?

Recommendation 36

Strength of Recommendation: Strong
The child and parents should be involved in selecting supports, as well as other people, when relevant.

 

Recommendation 37

Strength of Recommendation: Strong
In recommending supports, practitioners should draw on multiple sources of information for the potential benefits and risks for the child and family.

 

Recommendation 38

Strength of Recommendation: Strong
Practitioners should consider the best available research evidence when making support recommendations for the child and family.

 

Recommendation 39

Strength of Recommendation: Strong
Practitioners should recommend supports that offer a plausible, practical, desirable, and defensible pathway to helping children and families achieve personally meaningful and valued outcomes.

 

Recommendation 40

Strength of Recommendation: Conditional
Practitioners should ensure the child and family understand the rationale for recommended supports, along with potential benefits, costs, and alternative options.

 

What knowledge and skills are required to plan supports?

Recommendation 41

Strength of Recommendation: Conditional
People who recommend supports should have relevant qualifications and work within their scope of practice.

 

Recommendation 42

Strength of Recommendation: Conditional
Practitioners who recommend supports should have professional experience that matches their responsibilities.

 

Recommendation 43

Strength of Recommendation: Conditional
Practitioners who recommend supports should be eligible for membership with the relevant professional association and regulated.

 

Recommendation 44

Strength of Recommendation: Conditional
Practitioners who recommend supports should have knowledge and practical skills that are directly relevant to working with autistic children and their families.

 

Recommendation 45

Strength of Recommendation: Strong
Practitioners who recommend supports should provide the child and family with an accurate, complete, and timely plan of proposed supports.

 

Recommendation 46

Strength of Recommendation: Conditional
Where a practitioner does not have the qualifications, professional experience, professional regulation, relevant knowledge and skills, personal capacity, and/or professional capacity to plan a particular support, they should refer the child and family to a practitioner who does.

 

Section 4: Delivering supports

Who should deliver supports?

Recommendation 47

Strength of Recommendation: Conditional
Supports should be delivered by the people (e.g., parents, practitioners) who are likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

 

What knowledge and skills are required to deliver supports?

Recommendation 48

Strength of Recommendation: Conditional
Practitioners who deliver supports should have relevant qualifications and work within their scope of practice.

 

Recommendation 49

Strength of Recommendation: Conditional
Practitioners who deliver supports should have professional experience that matches their responsibilities.

 

Recommendation 50

Strength of Recommendation: Conditional
Practitioners who deliver supports should be eligible for membership with the relevant professional association and regulated.

 

Recommendation 51

Strength of Recommendation: Conditional
Where another person assists a practitioner in the delivery of supports, that person must have appropriate knowledge, skills, experience, training, and regulation; and be adequately supervised and supported by the practitioner who has overall responsibility for the delivery of supports.

 

Who should receive the support?

Recommendation 52

Strength of Recommendation: Strong
Practitioners should support the child, people around the child, and/or changes to the environment in whatever combination is likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

 

In what settings should supports be delivered?

Recommendation 53

Strength of Recommendation: Conditional
Practitioners should deliver supports in the setting(s) that are likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

 

In what formats and modes should supports be delivered?

Recommendation 54

Strength of Recommendation: Conditional
Practitioners should deliver supports in the format(s) (one-on-one, in a group) that are likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

 

Recommendation 55

Strength of Recommendation: Conditional
Practitioners should deliver supports in the mode(s) (e.g., in person, telepractice) that are likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

 

In what amount and duration should supports be delivered?

Recommendation 56

Strength of Recommendation: Conditional
Practitioners should deliver supports in an amount and duration that is likely to lead to the most meaningful and sustained increase in the child’s learning, participation, and wellbeing.

 

How should practitioners engage with other service providers and service systems?

Recommendation 57

Strength of Recommendation: Conditional
Practitioners should coordinate the supports they deliver with other relevant service providers and service systems.

 

Section 5: Outcomes, quality, and safeguarding

How should the effects of supports be monitored and reviewed?

Recommendation 58

Strength of Recommendation: Strong
The child, their family and the practitioner(s) should be involved in determining who will be involved in monitoring and review of supports.

 

Recommendation 59

Strength of Recommendation: Strong
Practitioners should monitor the extent to which the supports were delivered as planned.

 

Recommendation 60

Strength of Recommendation: Strong
Practitioners should monitor the child’s and family’s progress towards goals.

 

Recommendation 61

Strength of Recommendation: Strong
Practitioners should monitor the child’s and family’s generalisation and maintenance of use of skills across people, settings, and activities, and over time.

 

Recommendation 62

Strength of Recommendation: Strong
Practitioners should monitor the costs and benefits to the child and family of receiving the supports.

 

Recommendation 63

Strength of Recommendation: Strong
Practitioners should monitor for unplanned outcomes associated with the supports they deliver.

 

Recommendation 64

Strength of Recommendation: Strong
Practitioners should monitor progress by directly asking and listening to the child and family.

 

Recommendation 65

Strength of Recommendation: Strong
Practitioners should monitor progress through child observations.

 

Recommendation 66

Strength of Recommendation: Strong
Practitioners should monitor progress through reports from others.

 

Recommendation 67

Strength of Recommendation: Strong
Practitioners should monitor progress through the collection and evaluation of outcome data.

 

Recommendation 68

Strength of Recommendation: Strong
Practitioners should review goals, experiences, and outcomes at regular intervals based on the needs and preferences of each child and family.

 

Recommendation 69

Strength of Recommendation: Conditional
Practitioners should ensure that information they collect during monitoring is shared with children and families, and shared with other people, when relevant and appropriate.

 

Recommendation 70

Strength of Recommendation: Conditional
Practitioners should share information related to monitoring and reviews in a way that is informative, understandable, and meaningful to the child and family.

 

Recommendation 71

Strength of Recommendation: Strong
Practitioners should empower and support the child and parents to make decisions about whether to continue, change, or stop accessing supports.

 

Recommendation 72

Strength of Recommendation: Strong
Practitioners should communicate to the child and parents when there is indication that their services are no longer required or recommended.

 

How can the risk of adverse effects be reduced?

Recommendation 73

Strength of Recommendation: Strong
Practitioners should ensure that the delivery of supports takes place in a safe environment.

 

Recommendation 74

Strength of Recommendation: Strong
Practitioners should have up-to-date knowledge of research evidence for the effectiveness, acceptability, feasibility, and risks of the supports they recommend and deliver.

 

Recommendation 75

Strength of Recommendation: Strong
Practitioners should have up-to-date knowledge of the views and preferences of autistic people regarding different supports and their delivery.

 

Recommendation 76

Strength of Recommendation: Conditional
Practitioners should have recent experience working with autistic children and their families, and engage in continuing professional development.

 

Recommendation 77

Strength of Recommendation: Strong
Practitioners should access clinical supervision that matches their knowledge, skills, and professional experience.

 

Recommendation 78

Strength of Recommendation: Strong
Practitioners should inform the child and family about how they can make complaints about the supports they receive.

 

Recommendation 79

Strength of Recommendation: Strong
Practitioners should inform the child and family of any potential or actual conflicts of interest they have in providing supports or making referrals.

 

Recommendation 80

Strength of Recommendation: Strong
Practitioners should follow relevant international conventions, national and statelegislative requirements, and other associated regulations.

 

Recommendation 81

Strength of Recommendation: Conditional
Practitioners should ensure clear, appropriate, and accurate information is shared with the child, family, and other practitioners.

 

How should adverse effects be managed?

Recommendation 82

Strength of Recommendation: Strong
Practitioners should have a documented procedure for the monitoring of adverse effects of supports.

 

How should the rights of children and families be protected?

Recommendation 83

Strength of Recommendation: Strong
Practitioners should be familiar with, and respect, the individual language and terminologypreferences of the child and family.

 

Recommendation 84

Strength of Recommendation: Strong
Practitioners should respect each child and family member for who they are, respect their goals, values and preferences, and work in ways that promote and protect their human rights. 

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