Autism Spectrum Disorder:

Evidence-Based/Evidence-Informed Good Practice for Supports Provided to Preschool Children, Their Families and Carers

A Report Prepared By

• Jacqueline M. A. Roberts, Griffith University
• Katrina Williams, University of Melbourne, The Royal Children’s Hospital & Murdoch Children’s Research Institute

With Assistance From

• Kate Smith
• Lanie Campbell

This report was funded by: National Disability Insurance Agency

February 2016

Contents

• What is this report?
• Abbreviations
• Executive summary
  • Purpose
  • Methods
  • Question 1
    • Findings
    • Recommendations
  • Question 2
    • Findings
    • Recommendations
  • Question 3
    • Findings
    • Recommendations
  • Recommendations for best practice and research
• Definitions and terms used
• Background information
• Methods
• Results and description of evidence records
  • Question 1. Good practice
    • Underpinning principles
    • Aims, approaches and actions
    • When, who, and where?
    • Intervention programs
    • Other considerations
    • Recommendations
    • Interventions that should not be used
  • Question 2. Individualised levels of early intervention support
    • Characteristics of each child and family
    • Characteristics of support or early intervention programs
    • Summary and recommendations Question 3. Factors that indicate a need for a modification to an intervention program
  • and timeframe for review of outcomes
    • Factors that could influence intensity or type of intervention
    • Good practice in individual planning
    • Recommendations
  • Recommendations for best practice and research
• Appendix 1 Stakeholder group meetings
• Appendix 2 Project outline
• Appendix 3 Interim report to stakeholders
  • Criteria for considering records for this review
  • Search methods for identification of studies
    • Electronic database searches
    • Searching other resources
  • Data collection and analysis
    • Selection of studies

Data extraction and management

Results of searches

Extraction of key elements

Question 1

Questions 2 and 3

Key elements

Professional and care process elements

Involvement of parents and families

Appendix 4 Summary table with distilled principles ……………………………………………… 57 Appendix 5 A list from NAC of evidence based ‘behavioural interventions’ used alone or in combination …………………………………………………………………………… 65 Appendix 6 Emerging interventions from Wong et al. (2014) …………………………………. 66 Appendix 7 Reviews only including children younger than age 8 and information about level of support ……………………………………………………………………………… 67 Appendix 8 Reviews including children over age eight and information about level of support ……………………………………………………………………………………………….. 70 Appendix 9 Guidelines and information relevant to level of support ……………………… 76 Appendix 10 Research recommendations ……………………………………………………………. 81 Reference list ……………………………………………………………………………………………………… 85

What is this report?

Who has this report been prepared for?

This report has been prepared for the National Disability Insurance Agency (NDIA).

Who has this report been prepared by?

It has been prepared by 2 consultants, with the assistance of 2 project officers, contracted by the NDIA.

To assist with the development of this report the NDIA also convened a stakeholder group (Textbox 2). At the time this report was produced, there had been 4 stakeholder meetings. Details are listed in Appendix 1. Meetings were a combination of face‐to‐face, phone and video meetings, using whichever mode best suited each stakeholder. It is anticipated that future stakeholder meetings will discuss this report along with the implementation of the report findings in the NDIA context.

What is the purpose of this report?

The NDIA sought to answer 3 questions (Textbox 1) to assist with making decisions about the delivery of services to preschool children with autism, and their families and other carers. The consultants were contracted to synthesise existing evidence, interpret it for the Australian context and recommend answers to questions 1-3.

Textbox 1 Questions posed for this report

Question 1 (Q1) What is evidence-based/evidence-informed good practice for supports provided to children with autism and their families/usual carers — with a focus on the autism- specific elements?

Question 2 (Q2) What characteristics or other factors would assist in deciding individualised levels of early childhood intervention support needed for a child with autism?

Question 3 (Q3) What factors, including intervention outcomes would indicate a need for a modification, for example an increase or decrease to intensity and/or type of intervention, once an early intervention program has been in place and the recommended timeframe for review of outcomes.

Factors of relevance but beyond the scope of this report

The NDIS legislation sets out the eligibility criteria for entry into the scheme (NDIS Act 2013, S25) and the way this will be operationalised for early intervention is being decided as part of the trial period.

NDIA has commissioned Early Childhood Intervention Australia (ECIA) (http://www.ecia.org.au/) to develop good practice recommendations called ‘National Guidelines for Early Childhood Intervention’. These recommendations will apply to all children, and will form the basis upon which specific recommendations focused on different types of developmental problems can be added.

Who is this report relevant to?

This report provides specific recommendations about children with autism and their families and other carers.

Textbox 2 The stakeholder group and their roles/positions

Dr Angelika Anderson Senior Lecturer, Institute of Human Development & Counselling Krongold Centre, Faculty of Education, Monash University

Mr Bob Buckley Convener, Autism Aspergers Advocacy Australia (A4)

Professor Anita Bundy Professor & Chair of Occupational Therapy, Faculty of Health Sciences, University of Sydney

Professor Cheryl Dissanayake Director, Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University

Mr Barrie Elvish Chief Executive Officer, Autism SA

Mr Adrian Ford Chief Executive Officer, Aspect Australia

Ms Kathryn Fordyce Manager, North West Tasmania Autism Specific Early Learning and Care Centre (Burnie City Council)

Professor Deb Keen Autism Centre of Excellence, School of Education and Professional Studies, Griffith University Mt Gravatt Campus

Ms Denise Luscombe National President. Early Childhood Intervention Australia

Ms Sylvana Mahmic Vice President, Early Childhood Intervention Australia Chief Executive Officer, Plumtree

Ms Joan McKenna-Kerr Chief Executive Officer, Autism Association of Western Australia

Professor Sylvia Rodger Director of Research and Education, Australian Learning and Teaching Fellow (Office of Learning and Teaching), Autism CRC Ltd, Cooperative Research Centre for Living with Autism Spectrum Disorders

Mr Alan Smith Chief Executive Officer, AEIOU Foundation

Professor Andrew Whitehouse Head of Developmental Disorders Research Group, Telethon Kid’s Institute, University of Western Australia

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Abbreviations

ABA applied behaviour analysis ADHD attention deficit hyperactivity disorder ADOS Autism Diagnostic Observation Schedule AHRQ Agency for Healthcare Research and Quality ASD autism spectrum disorder CTM comprehensive treatment models DSM-5 Fifth Edition of Diagnostic and Statistical Manual of Mental Disorders EBP evidence-based practice ECI early childhood intervention ECIA Early Childhood Intervention Australia FaHCSIA Australian Department of Families, Housing, Community Services and Indigenous Affairs ICD-10 International Statistical Classification of Diseases and Related Health problems (10th revision) NAC National Autism Centre NDIA National Disability Insurance Agency NICE National Institute for Health and Care Excellence PECS picture communication exchange system PRT pivotal response therapy RCT randomised controlled trial SR systematic review UCLA Lovaas University of California, Los Angeles Lovaas Approach

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Executive Summary

Purpose

The National Disability Insurance Agency sought answers to 3 questions about the provision of early intervention for children with autism.

Diagnosis of autism, as described in existing guidelines, requires children to be assessed by a paediatrician or a child and adolescent psychiatrist, a psychologist and a speech pathologist and for a consensus diagnosis to have been reached in accordance with existing classification systems. Current classification systems are The Diagnostic and Statistical Manual of Mental Disorders: DSM-5 or the International Classification of Diseases and Related Health problems, 10th edition (ICD-10). Also recommended is consideration be given to detailed profiling of strengths and difficulties, beyond what may be needed for making a diagnosis, to enable tailoring of intervention and management strategies. If DSM-5 is used, the severity of ASD symptoms and level of functioning should be specified along with the presence of co-morbid conditions.

Methods

Information to answer the 3 questions posed was gathered from systematic reviews and evidence-based guidelines that had been published after the evidence summary prepared for FaHCSIA in 2011. Following feedback from the stakeholder group the review was broadened to include information from reviews that included single case studies and a ‘consensus statement’ about up-to-date approaches to support and early intervention for preschool children.

The systematic reviews, guidelines and good practice statements that were included are listed in Error! Reference source not found..

Recommendations relevant to Questions 1-3 were extracted from these reports and a narrative synthesis conducted to identify emergent themes of what constituted good practice.

Systematic Reviews

Question 1

What is evidence-informed good practice for supports provided to children with autism and their usual carers - with a focus on the autism-specific elements?

Findings

Several key support elements were identified from the included reviews and publications. We developed a structure for describing these key support elements, avare that elements listed interact with one another on the pathway to finding the right evidence-informed good practice supports for each individual child and family. The key support elements and their subcategories were grouped as shown in Table 2.

Key Support Elements Underpinning Good Practice in Early Intervention for Autism

Table 2: Key support elements underpinning and informing good practice in early intervention for autism

Key support elements Subcategories

Underpinning principles Evidence-based

                                  Families require support
                                  Family-centred
                                      Individual planning

Aims, approaches and strategies Aims:

                                     Social communication development
                                  Minimise behaviours that challenge
                             Enhance learning and participation
                               
                               Approaches:
                                  Environmental management
                                      Building on opportunities
                                 Antecedent – behaviours – consequence
                                       Transition support
                                    
                                    Strategies (for details see Table 3)

When, who, and where? When to start

                        Team approach
                                    Setting and staff ratios
                                   Professional development and training
                                Parent training and development
                              Peer interventions

Intervention programs Program requirements:

                                         Intensity
                                      Quality
                                      Delivery
                                    Evaluation
                             
                             Program types

Other considerations Co-occurring or related conditions

                                 Capacity building

Key findings were: - Parents/carers of children with autism should be supported during the early intervention years. - Supports for children with autism should be evidence‐based and delivered using a family‐centred approach that incorporates individual planning. - The specific early intervention program chosen will take into account family preferences and capacity and each child’s strengths and difficulties, age and stage of development. - Aims of support for the child with autism are to improve social communication and minimise behaviours that challenge to enhance learning and participation.

• Approaches recommended are environmental modification, building on opportunities and supporting transitions.
• A large number of evidence-based strategies can be used to achieve these aims.
• Early intervention or support should start as soon as a diagnosis is made and the family are ready.
• Having well-trained professionals working as teams to support children with autism and their families is needed. Parent or peer training is promoted, as long as it is incorporated to take into account a family-centred approach.
• Intervention programs for children with autism should be comprehensive, that is, across all domains of learning, with clearly stated, replicable process and content. This type of program can be one that has been developed and given a name, such as Treatment and Education of Autistic and related Communication handicapped Children (TEACCH) and the Early Start Denver Model (ESDM), or one that is developed for an individual child through an individual planning process designed to identify and achieve agreed aims, using good-practice principles and evidence-based strategies, sometimes called an eclectic comprehensive intervention program. For example components of a comprehensive program may focus on the development of communication, the management of problem behaviour and the understanding of emotions. Components of a comprehensive individualised program may also be named evidence based strategies, such as Picture Exchange Communication System (PECS), or based on evidence based approaches, such as Positive Behaviour Support (PBS).
• Early intervention programs for children with autism must be of sufficient intensity and fidelity (i.e. implemented consistently and accurately) and be evaluated to ensure program quality.
• Interventions identified as (1) proven not to be effective or (2) without evidence that they are effective should not be used.
• Difficulties that may co-occur with autism or present in a similar way, but need separate diagnosis and specific or targeted interventions, should be considered.

Question 2

What characteristics or other factors would assist in deciding individualised levels of early childhood intervention support needed for a child with autism?

Findings

The level of early intervention support is a funding (or package) decision made prior to the commencement of a support program being implemented. Even if, as is ideal, detailed information about an individual child and family’s strengths and difficulties is available to those making this decision, there is not yet sufficient evidence upon which to base individualised decisions about the level of early intervention support for children with autism based on these characteristics.

Current best evidence to inform decisions about level of support is information about intensity and duration of interventions that have been shown to be effective. Reviews and guidelines that provide evidence about intensity (hours per week) and duration of interventions report that comprehensive programs that have been evaluated and shown to be effective are most commonly provided for between 15 and 25 hours a week, suggesting a midpoint of 20 hours, and for at least 1 year. Children included in the studies that have been reviewed have a diagnosis of autism (research standard).

There are notable gaps in the evidence. In particular the recommended ratio of allied health professional time to other appropriately trained therapists/early intervention workers and the proportion of time that should be spent in 1 staff:1 child versus small groups (up to 1:3) settings was not easy to distil from existing literature. In addition, from a practical standpoint the amount, type and ratio of staff:child intervention is related to the strengths and needs, age and stage of the child and the goals of the child’s program. For example work on some communication goals can only be done in a small peer group setting.

Factors, other than evidence about intervention effectiveness, that need to be taken into account when making decisions about the level of support for young children, include ethical and equity considerations, and also the way parents adjust and adapt to their child and their individual needs.

Recommendations

Children who have received a diagnosis of autism should receive 20 hours per week of early intervention that involves interaction with them. Review of progress should occur by the early intervention support program team as outlined in Q 3, with review of the level of support annually, unless earlier review is indicated. In addition a package to support the child’s family (for example, counselling or assistance arranging child care) be provided.

The level of support comes with requirements that:

• The support for the child and family fulfils specifications provided in Q1. In particular:
  • Staff to child ratios can vary between 1:1 and 1:3 as determined by the child’s individual program
  • All staff are autism trained (training and qualifications will vary)
  • Programs must involve allied health professionals in individual planning, program implementation and review

Question 2

The Support Should Be Sufficiently Flexible That It Can Be Adapted And Modified In Line With The Child And Parents’ Strengths And Needs (See Q 3)

Following an allocation of support parents will need support to choose the most appropriate type of intervention for their child, their situation and their preferences, and also to identify their family’s support needs.

Whether this recommendation is feasible in Australia today is outside the scope of this report.

Question 3

What factors, including intervention outcomes would indicate a need for a modification, for example an increase or decrease to intensity and/or type of intervention, once an early intervention program has been in place and the recommended timeframe for review of outcomes?

Findings

The heterogeneity of autism, variability of development over time of children with autism and the understanding that no one intervention will meet the needs of all children with autism reinforces the need for individualised planning for each child with autism and their family.

In addition the evidence is not yet clear which interventions work best for which children with autism. Interventions vary in their content, ways of teaching, and the skills and attributes of those who teach and train young children with autism and support their families. The goals for children, their families and their interventionists are also variable. In addition the way parents/carers value different outcomes also differs from one family to the next and will be influenced by their child’s age and stage. For example the priorities of families with newly diagnosed children will be different from those of children making the transition to school a year or 2 after diagnosis.

Intervention programs need to be evaluated regularly to ensure that they continue to meet the needs of the child. This process involves a review of the individual plan goals and review of the child’s skills and needs to ensure that the program is addressing both of these. For example at review whether a child is showing improvement will be noted as well as whether the goals are still relevant. Individual plans should be developed at least annually and reviewed at least every 6 months (Prior et al., 2011, p123).

Currently there is insufficient evidence about what factors indicate a need for a modification to early intervention programs to allow evidence-based decisions for individuals based on well-described subgroups or characteristics such as age and ability. Therefore there is a need for individualised planning that provides information that is needed to make decisions about support/funding level. As such the early intervention support team will be required to review progress and develop a program that meets the child and family’s needs and provide information about intensity staffing type staffing ratios and setting.

Recommendations

For the NDIA planner

The planner will review the child/family plan every 12 months to determine if continuation of support is needed.

Individual Plan Review Process

The planner will review the individual plan created by the early intervention support team who have been providing services for the child and family for the previous 12 months. This will be done in collaboration with the family and relevant professionals to assess the suitability of the intervention provided for the child and family with consideration given to factors outlined in Q1 and Q2.

The planner’s review should include review of child and family factors, changes, priorities, review of long term goals, resources, strengths and needs.

The planner will make recommendations about any changes required in the child’s plan including level and broad types of support required for the next 12 month period.

Planners will require professional development so that they know what a good plan and a relevant review looks like.

For the program support team

Program teams will focus on a collaborative, functional assessment, goal setting, plan implementation with review and revision at least every 6 months, as per the recommended individual planning process. Available resources, such as the Positive Partnerships Planning Matrix and Goal Attainment Scaling, may be used to assist with this.

Review by the program team will:

• allow timely modification of support based on changes — either improvements or failure to respond to intervention, or new difficulties — in relation to the approaches and actions being used for early intervention, the location and the people involved
• allow information sharing with those who allocate funding (packages) to ensure the appropriate level of funding is available for the child and family
• demonstrate early intervention supports are being offered in a way that is consistent with good practice.

Every 12 months the individual plan will be shared with the NDIA planner and information including:

1. intensity of the program required
2. staffing type
3. staffing ratios
4. setting(s) for early program
5. amount of support needed for the family, and how this will be delivered

Recommendations for best practice and research

We propose that to achieve best practice and fill existing evidence gaps:

1. An individual plan is created for each child based on current good practice as set out in Q3.
2. The individual plan includes goals and a method to assess goal achievement — outcome measure(s).
3. Parent involvement in developing the individual plan, including outcomes, is documented.

The Individual Plan

Requirements:

• The individual plan includes the type(s) of intervention being used and rationale for selection of intervention.

Review Frequency:

• The individual plan be reviewed at least every 6 months, or more frequently if great gains are made, there is minimal or no response to intervention, or new difficulties are identified.

Outcome Measurement:

• Outcomes are measured at least every 6 months to assess goals.

Annual Assessments:

• An assessment of adaptive behaviours and also an assessment of social communication be completed at least every year — as indicators of progress in key areas addressed by early intervention.

Professional Details:

• Early intervention services provide the names, qualifications and experience of their early intervention professionals to NDIA.

Key Worker Notification:

• NDIA is notified as to whether a key worker was assigned to a child and who they are, if one was assigned.

Record Keeping:

• Early intervention professionals keep a record of their early intervention encounters with each child, including information about:
  • number of face‐to‐face hours with the child per week
  • whether the encounter was one‐to‐one or group based, and if group based the ratio of professionals to children
    • the setting in which the intervention occurred
  • whether a parent/carer or childcare worker was being trained.

Parent Feedback:

• Information is gathered from parents/carers about their experience of the interventions offered.

Autism-Specific Preferences:

• Information is sought from parents of children with autism to understand their preference for and experience of parent engagement in early interventions offered.

Health & Wellbeing Data Collection:

• Information is collected about parent/carer health and wellbeing.

Additional Services Access:

• Information is collected about any additional services accessed by the child and family.

Definitions and terms used

Aims of supports

All autism interventions aim to improve social communication and minimise behaviours that challenge on the pathway to improving learning and participation for each child with autism and their family.

Approach to supports

Different approaches (also known as processes) to delivering intervention exist. The autism field is not consistent in how it talks about this. So we are separating the approach from the strategy or action (see below) aware that different terms are used and that approach and strategies are often combined in lists of effective interventions presented in other documents. In one review (Wong et al., 2014) the term ‘focused interventions’ was used (see below) for interventions that vary in terms of who delivers them, the intervention approach and the specific type of actions that are taken to achieve a specific goal (e.g. development of communication abilities). Comprehensive intervention programs (see below) similarly are developed taking into account the ‘who delivers the intervention’, aims, approach, however in comprehensive programs, strategies with individual modifications are made within the framework of the program. Intervention may also be based on individual planning, goals and strategies and not necessarily incorporate named programs, that is, developed with the ‘who delivers the intervention’, aims, approach and strategies as key components of an individualised plan.

Autism

In this document the word autism will be used for Autism Spectrum Disorder (DSM5) and all autism spectrum disorders (ASD) (DSM‐IV & ICD‐10).

Comprehensive intervention programs (also known as comprehensive treatment models)

Comprehensive programs ‘consist of a set of practices designed to achieve a broad learning or developmental impact on the core deficits of ASD’ (Wong et al., 2014). ‘These programs were characterised by organisation (i.e., around a conceptual framework), operationalisation (i.e., procedures manualised), intensity (i.e., substantial number of hours per week), longevity (i.e., occur across 1 or more years), and breadth of outcome focus (i.e., multiple outcomes such as communication, behaviour, social competence targeted)’ (Wong et al., 2014).

Early childhood intervention

‘ECI is the process of providing specialised support and services for infants and young children with developmental delays or disabilities (aged from birth through to school age), and their families in order to promote development, wellbeing and community participation. The aim of these services is to work in partnership with parents, families and significant others to enhance their knowledge, skills and supports to meet the needs of the child, optimise the child’s learning and development, and their ability to participate in family and community life. One of the most influential shifts in ECI has been the move from a focus on attempting to address children’s “deficits” or “impairment” to a focus on promoting participation and highlighting the whole context of development within the

Evidence-based

By evidence‐based we mean interventions that have been through a process of evaluation that has proven that they improve child functioning in the specific domains which are being treated, such as social, communication and adaptive behaviour. Gathering and synthesising evidence requires the use of a standard set of rules for study inclusion and evaluation, which have been agreed to by scientists in this field. There is a lack of consistency in the way evidence about autism supports and interventions is gathered and assessed. The main difference is that some systematic reviews/guidelines require group based comparative studies as the minimum level of evidence and others accept single-case design studies. This leads to differences in the way included studies are assessed and how evidence is synthesised, and also to differences in findings.

In this review we have been inclusive of all research-evaluating approaches as long as the rules for inclusion and evaluation are clear and agreed to by those working in the field. This does not mean, however, that all evidence is equal. Some research evaluating some approaches, included in systematic reviews/guidelines is not of sufficient rigor to allow us to be sure that there is improvement beyond that which would occur over time, or as a result of an alternative (comparison) intervention.

Focused Interventions

Focused interventions are ‘designed to address a single skill or goal of a student with ASD’ (Odom et al., 2012). These practices are operationally defined, address specific learner outcomes, and tend to occur over a shorter time period than comprehensive treatment models (i.e., until the individual goal is achieved). ‘Examples include discrete trial teaching, pivotal response training, prompting, and video modelling.’ (Wong et al., 2014).

‘Focused intervention practices could be considered the building blocks of educational programs for children and youth with ASD, and they are highly salient features of the Comprehensive Treatment Models (CTMs)’ (Wong et al., 2014).

Guidelines

Guidelines are developed to provide advice or recommendations about best practice. Guidelines incorporate evidence from systematic reviews and other sources and usually provide an assessment of the level of evidence upon which each recommendation is based, so the reader has an understanding of whether that recommendation is likely to change if/when new evidence emerges.

Multi-disciplinary, Transdisciplinary, Interdisciplinary

These terms are used in different ways by different people. In this report we will not use these terms but will instead describe in brief phrases what we mean in the relevant situation so that it is clear what is needed. We will use the term ‘team’ when well-coordinated care is needed with more than one type of professional expertise.

Parents

In this document the term parents will be used for parents and others who provide care for the child in their everyday life, including for example, step‐parents, foster carers and grandparents.

Preschoolers

In this report preschoolers includes children before they go to school and up to the age of 8, in line with the Early Intervention Best Practice discussion paper (available at http://www.ecia.org.au/documents/item/114).

Strategies

Different specific intervention types are used to support children with autism, and can be delivered in different settings and by different individuals. These have been called procedures by some, but terminology in the literature varies. Examples of strategies potentially used in early intervention are imitation and modelling.

Supports provided to children with autism and their families/usual carers

This phrase is used in Q1 and indicates early intervention for children with autism and broader assistance beyond the definition of early childhood intervention. Supports was chosen as the preferred phrase for Q1 by the stakeholder group.

Systematic reviews of interventions

A systematic review is a review which follows pre‐determined methods for searching the literature, evaluating evidence found and synthesising the evidence. The aim of a systematic review is to minimise bias that can be created by presenting only part of the existing evidence base, and also to provide the reader with information about the risk of bias or quality of included studies and overall strength of the evidence found. Based on the methods used, a summary or synthesis, statistical if possible, is provided so the reader has relevant information about the efficacy or effectiveness of the intervention(s) investigated.

Where intervention occurs

Interventions can occur in the home, community, childcare facilities, educational settings, specialised autism centres, specialised early intervention centres or a combination of these.

Who delivers an intervention

Interventions can be delivered by professionals, parents/carers and siblings/peers. Most commonly the professionals involved are psychologists, speech therapists (also known as speech pathologists and speech and language therapists/pathologist (SLP)), occupational therapists, social workers, teachers, childcare workers, and therapists trained to deliver a certain type of intervention, for example behaviourists. Parents and other carers for a child also deliver intervention, as do their peers or siblings, when trained.

Background information

Autism today

Much is still to be learned about the early years of development for children with autism. While research and science continue to strive to provide a comprehensive understanding of the underpinnings of autism and its characteristics, along with the best ways to prevent, ameliorate or manage them, families require services that are based on the best of what we know already.

Unfortunately the autism world is no stranger to controversy and historically there have been claims about causes and interventions reported to provide impressive outcomes that have later been disproven. Also named and marketed interventions and intense competition between different service providers adds to the confusion. This landscape of ongoing discoveries about cause, new understandings about autism, both how to diagnose it and best interventions, coupled with a lack of agreement about what constitutes best intervention and management is hard for parents, carers, service providers, service developers and policy makers to navigate.

What we do know is that all children with autism have difficulties with social communication and restricted or repetitive behaviours, for some including sensory problems that are out of keeping with children of a similar ability. Children with autism also commonly have other developmental, emotional or behavioural problems, including anxiety, intellectual disability and attention deficit hyperactivity disorder (ADHD). Autism ‘is a neurodevelopmental disorder beginning at birth or shortly after. … To help children with autism it is essential to focus on the earliest years of development, since this is a critically important time for early learning which powerfully affects the child’s future life course’ (Prior & Roberts, 2012).

Diagnosis

There are now established recommendations for diagnosis and assessment of children with autism from Australia (Silove et al., 2008) and internationally (NICE guidelines, 2013).

All diagnosis and assessment guidelines require children to be assessed by a paediatrician or a child and adolescent psychiatrist, a psychologist and a speech pathologist and for a consensus diagnosis to have been reached in accordance with existing classification systems, which for children today will be the Fifth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM‐5) or the International Classification of Diseases and Related Health Problems, 10th edition (ICD‐10). All recommend that consideration be given to detailed profiling of strengths and difficulties, beyond what may be needed for making a diagnosis, to enable tailoring of intervention and management strategies.

Under DSM-5, the severity of ASD symptoms and level of functioning should be specified along with the presence of co-morbid conditions. Information about the child and family from the diagnosis and assessment process can then be used to guide the selection of autism-specific approaches to intervention, that are in line with current best evidence and parents priorities, that are most likely to be successful.

Support and interventions

Autism is a highly variable condition, which changes over time as children grow and develop. As a result even interventions and strategies with the most robust evidence will not be effective for all

Evidence-Based Practice (EBP) in ASD Intervention

children with autism all the time. The NAC (2015) acknowledges that while it is important to consider research‐based interventions first, there are additional criteria to be considered when selecting interventions. For example the NAC (2015) states that individual preferences and values, capacity, and professional experience also play a role in intervention selection. This is often referred to as evidence‐based practice (EBP). In this environment parents and their collaborating professionals need guidance about the key elements of good practice in ASD intervention, to inform their decisions about interventions that are likely to be most effective and appropriate for their situation. Nonetheless evidence-based or ‐informed guidance is very important in the field of autism, because there has been high uptake of interventions that lack scientific evidence for effectiveness, some of which have caused direct harm to children.

All interventions have potential negative impacts

All interventions have potential negative effects, and early intervention is no exception. Information about negative effects has rarely been reported and this is mentioned specifically in 2 reports (Weitlauf et al., 2014; NAC, 2015). As well as direct negative effects, there are opportunity costs if ineffective supports and interventions are used.

Individual difference

We know that no 2 children with autism are the same, which means that interventions will need to be adapted to suit each child’s autism characteristics, their abilities, their environment and their parents’ priorities and values.

The way children with autism change and develop over time is not predictable. For example development in some children with autism may appear to plateau for a time. Some children with autism may even regress. As a result information about their progress, new characteristics and emerging abilities or difficulties is also necessary to tailor interventions on an ongoing basis to the needs of a child and their family.

Evidence about autism is evolving

Evidence that underpins guidance about supports for preschool children with autism and their families continues to evolve. It is likely that our understanding of best practice for support and intervention will also be influenced by changes in our understanding of autism and its causes, which will be linked in turn to best methods for diagnosis. This means that any recommendations provided will need to be updated as new evidence emerges or as reviews and guidelines based on evidence are published, for example a NICE guidelines update is expected in 2016.

Methods

The methods proposed and accepted by the stakeholder group and the NDIA for this review can be found in Appendix 2. The methods used, as presented in an interim report, are presented in Appendix 3.

In brief, systematic reviews and evidence-based guidelines relevant to support and early intervention for children with autism, including any of the subcategory diagnoses that are included in the autism spectrum, were included, with a focus on children aged up to 8 years. The academic literature and relevant autism and government websites were searched, with a focus on publications and reports from 2011. The project officers (KS & LC) presented key findings from publications and reports identified and the consultants assessed findings for relevance and synthesised key messages. These were shared with the stakeholders as an interim report (Appendix 3) and stakeholders were asked to suggest additional missed resources and whether input from a broad expert groups was needed.

Results and description of evidence records

Two sources of information, the NICE guidelines (https://www.nice.org.uk/guidance/cg170) and quality standards (https://www.nice.org.uk/guidance/qs51) for autism, and the Agency for Healthcare Research and Quality (AHRQ) ‘Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update’ (Weitlauf et al., 2014, retrieved from http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?productid=1945&pageaction=displayproduct) emerged as authoritative sources because they were well conducted reviews, contained relevant information, and were comprehensive and up-to-date.

Stakeholder feedback directed the reviewers to a recently published report that contained detailed information about evidence-informed specific early intervention strategies for experts to use and made some recommendations for evidence-based practice (NAC, 2015). Stakeholder feedback also recommended further consideration and incorporation of a current paper (Schreibman et al., 2015), representing a consensus statement about early intervention in autism from experts in the field. The consultants also decided to include a systematic review of focused interventions for autism (Wong et al., 2014). In addition, given this report was designed to build on the earlier work completed in Australia, the guidelines provided (Prior & Roberts, 2012) was also reviewed and incorporated.

All recommendations for evidence-based / -informed support and relevant principles that were included in these reports were extracted and grouped by the consultants to develop key principles. Specific intervention practices, either comprehensive or focused, that were reported as evidence-based were also extracted and lists compiled. Lists of practices that were reported as not evidence based that were accompanied with instructions about how to use the lists in practice, were also compiled.

Of the sources of information included one is a guideline (NICE guidelines, 2013) which is underpinned by a systematic review and evidence synthesis and evaluation. The full NICE guidelines

(2013) provide information about methods used to develop the guidance and assessment of included evidence. Three were systematic reviews and syntheses (NAC, 2015; Weitlauf et al., 2014; Wong et al., 2014). All syntheses used different methods for inclusion of studies and evaluation of the quality and/or strength of evidence.

One review identified evidence‐based ‘focused intervention practices’ (see definition above) (Wong et al., 2014) with another identifying similar practices that they called ‘procedures’ (NAC, 2015) as well as comprehensive intervention programs. Both of these reviews included single‐case design studies as well as controlled studies. The others included only group interventions studies that include a comparison group (NICE guidelines, 2013; Weitlauf et al., 2014). The AHRQ report (Weitlauf et al., 2014) sets out to answer specific questions while the NICE guidelines (2013) were developed for a broad age‐group of children and young people with autism, and their families.

One review, that did not use systematic review methodology or assess the level of evidence of included studies, but brought together many experts in the field to form a consensus statement was also used as a source of best practice suggestions (Schreibman et al., 2015), as was the only other local guidance about best practice in autism (Prior & Roberts, 2012).

The NICE guidelines (2013) evidence was last searched for in January 2013. The other reviews last searched for evidence on the following dates: Weitlauf et al., 2014 ‐ December 2013; NAC, 2015 ‐ Feb 2012; Wong et al., ‐ Dec 2011; Prior & Roberts ‐ 2012.

Contact with experts was not pursued following mixed feedback from the stakeholder group.

Question 1. Good practice

What is evidence-based/evidence-informed good practice for supports provided to children with autism and their families/usual carers — with a focus on the autism-specific elements?

Several key support elements were identified from the included reviews and publications, albeit with different requirements for good practice identified from different publications (Appendix 4). We have developed a structure for describing these key support elements, aware that elements listed interact with one another on the pathway to finding the right evidence-informed good practice supports for each individual child and family.

Underpinning principles are that the parents/carers of children with autism should be supported during the early intervention years. Supports for children with autism should be evidence-based and delivered using a family-centred approach that incorporates individual planning. The specific early intervention program chosen will take into account family preferences and capacity and each child’s strengths and difficulties, age and stage of development.

Aims of support for the child with autism are to improve social communication, enhance learning and participation and minimise behaviours that challenge. Approaches recommended are teaching specific skills, environmental modification, building on opportunities and supporting transitions. A large number of evidence-based strategies can be used to achieve these aims and are aligned with overarching approaches.

Early intervention or support should start as soon as autism is diagnosed and the family is ready. Having well trained professionals working as a team to support the child with autism and their family is needed. Parent or peer training is promoted, as long as it is incorporated to take into account a family-centred approach.

There are key elements that are necessary for intervention programs for children with autism. Programs must have sufficient intensity, fidelity and be evaluated to ensure program quality. Support or intervention programs are either comprehensive (across all domains of learning) named interventions or comprehensive programs developed through individual planning that work towards achieving the agreed aims, using good-practice approaches and evidence-based strategies. The latter are sometimes called eclectic comprehensive programs.

Some interventions were also identified as proven to be not effective or as lacking evidence that they are effective. These should not be used. Other considerations included identification of difficulties that may co-occur with autism or present in a similar way, but need separate diagnosis and specific or targeted interventions.

Underpinning principles

Evidence-based

The NAC (2015) review provides specific guidance about how to use the interventions it describes as either evidence‐based or emerging. Some interventions are described as unestablished and are not recommended for use at all. Essentially the NAC (2015) recommendation is to use established evidence‐based interventions or strategies. If unsuccessful or inadequate to meet goals then consider emerging interventions. Do not use unestablished interventions until evidence for their efficacy or effectiveness is available. Regularly review the evidence, and adapt practice by including interventions and strategies as evidence for their efficacy or effectiveness becomes available.

Families require support

All families with a child who has been newly diagnosed with autism will require support for themselves in addition to support that is provided for their child. Supports for families should address need for emotional support, for example by provision of parent support groups, and also the need for respite for all family members. Access to respite for families should be facilitated as required. All families will experience fluctuations in their support requirements depending on events and their personal circumstances. The level of support that is available should be able to be adjusted to accommodate these changes. Times when additional support is highly likely to be required include transition to school, time of important changes at home and any time intervention is implemented but is not effective or has undesirable side effects.

Family-centred

The following practices were considered necessary:

• Provide families with information about autism, its management, available services, relevant to the age and stage of their child.
• Provide assessment for child and family as required, needs, strengths, resources and preferences.
• Consult with families about the extent they wish to be involved in decision making and program development and offer partnership to the extent they prefer.
• Take account of family resources, capacity (time, money, stress) when selecting an intervention.
• Consider the values and preferences of the family and the person with autism when choosing an intervention and respect their wishes should they not wish to proceed with an intervention.

Individual planning

Children with autism have highly variable profiles of characteristics and different needs. An individual plan is required to address these characteristics and ensure planned interventions are appropriate to the age and stage of the child. Characteristics can be strengths as well as needs, and strengths can be developed and utilised to compensate for difficulties. Families and environments also vary in their strengths (resources) and needs and this must be taken into account when planning. Engagement with families and other key people in a child’s life is essential when developing an intervention program. Assessment of individual child, family, and environment with a

Aims, approaches and actions

Aims

Choice of intervention(s) should be based on needs of the child and ‘address core issues such as engagement and joint attention while systematically improving specific communication, cognitive and other skills’ (Schreibman et al., 2015) and aimed at enhancing function and adaptive behaviour.

Social communication development

There should be a focus on the development of social communication, reciprocity and engagement and also on increasing communication partner understanding and responsivity (see also parent/carer training).

Minimise behaviours that challenge

Minimising behaviour that challenges can increase learning and participation opportunities. Before using approaches to encourage positive behaviours or other interventions, ensure there is no mental health, environmental (see below) or physical problem triggering or maintaining the behaviour.

Enhance learning and participation

As social communication improves and behaviours that challenge are minimised it is important to encourage development of independent functioning and practical skills that will further enhance participation and learning opportunities.

Approaches

Environmental management

Environmental management refers to the structuring of the environment to facilitate child initiation and interaction with others, and also to manage characteristics of autism, such as sensory characteristics and resistance to change. Environmental management potentially provides a supportive teaching environment, visual supports, structure and routine, and caters to personal space requirements, management of obsessions and rituals, and sensory issues. Environmental management should be individualised and provided as determined by the child’s program.

Building on opportunities

Strategies that are relevant to the child’s age and stage and build on existing repertoire and social routines are ideal. Schreibman et al. (2015) refer to the use of child initiated teaching episodes, also referred to as following the child’s lead or interest or child choice, which increases the child’s engagement and motivation and provides naturally occurring reinforcement of learning. Use of naturally occurring contingencies as well as teaching activities that capitalise on child motivation are ideal. This could include incorporating obsessions and rituals to engage a child and reinforce responses. In young children strategies should be predominantly play based.

Naturalistic teaching strategies, listed as evidence based in the NAC (2015) review, is one approach that builds on opportunities to increase adaptive skills. Naturalistic teaching strategies ‘are a compilation of strategies that are used to teach children skills in their home, school, and community.’

Basic Concepts

The basic concepts include using materials in the environment and naturally occurring activities’ (NAC, 2015). Similarly pivotal response training or Pivotal Response Treatment®, which is listed as a strategy below ‘focuses on targeting “pivotal” behaviors related to motivation to engage in social communication, self-initiation, self-management, and responsiveness to multiple cues’ (NAC, 2015). Pivotal response training or treatment (PRT) includes parents and focuses on implementation in the natural environment, such as the home or in community or childcare settings.

Antecedent – behaviours – consequence

All interventions should ‘utilize a 3-part contingency (antecedent-response (behaviour)-consequence) to help the child understand when to respond and to provide feedback to the child’(Schreibman et al., 2015).

When developing an intervention for behaviour that challenges, first assess potential antecedent factors such as, communication difficulties, unpredictability, physical problems, the physical and social environment, changes to circumstances and routines, and possible abuse. Take into account the nature, severity and impact of the behaviour, the child’s communication needs, the environment, preferences of the child and their family or carers, prior experience and response to interventions and necessary supports or training for the family or carers. Focus on proactive strategies to address triggers including management of the environment (see below). Teach alternative appropriate skills including communication skills. Consider functional behaviour analysis if behaviour persists.

Transition support

Specialised support for major transitions such as into preschool and into school is essential for children with autism. Children with autism are typically very resistant to change. They may also need support to manage daily transitions as they struggle to maintain predictability.

Strategies

Evidence based strategies that are relevant include imitation, modelling and video modelling/feedback, and also verbal, visual, or physical prompting (also known as scaffolding or cueing) to support behaviour not yet established and provide opportunities for reinforcement and learning (see others in Table 3). The NAC (2015) review also identified evidence-based behavioural interventions that were used either alone or in combination (Appendix 5), and listed strategies with an emerging evidence base that were not proven to be effective at the time the report was published (Appendix 6).

Table 3 Strategies that are listed in one or more review or publication as evidence-based for preschool aged children

• Reviews are : Wong et al. = Wong et al., 2014; NAC = NAC, 2015; AHRQ = Weitlauf et al., 2014; NICE = NICE guidelines, 2013.# some included in table as listed separately in Wong et al.^ emerging not evidence based in NAC† listed as Pivotal Response Treatment ® in Wong et al.†† discussed mainly offered for school aged children with IQ > 70 in AHRQ report

When, who, and where?

When to start

It is generally agreed that early intervention should commence as soon as autism is diagnosed. Evidence suggests ‘younger age was associated with greater improvements, though effects were not always consistent’ (Weitlauf et al., 2014).

Team approach

Programs to be developed, implemented and reviewed by a collaborative team including professionals, such as speech pathologists, psychologists, doctors, social work or mental health professionals, teachers, as well as families and the person with autism. To facilitate clear and consistent communication, each child/family should have a key worker to coordinate supports and intervention.

Setting and staff ratios

There is no evidence to indicate one location as superior to others. Location of intervention should be tailored to suit each child and family’s strengths and needs, taking into account the program requirements and the goals. Options for settings include the home, a centre, or a childcare or educational setting. These settings can be autism specific or include children with other developmental difficulties and/or typical children (mainstream). The evidence for peer programs from the age of 3 years suggests that programs should focus on transition to regular early childhood or educational settings to provide opportunities for interaction with typical peers (NAC, 2015; Wong et al., 2014; NICE guidelines, 2013).

Staff support, both number and their training, will also depend on the child and family’s strengths and needs, their program plan and goals. Interventions that require 1:1 child to professional, more than one child with autism to one professional, small groups of children with autism and other developmental problems and/or typical children are all potentially appropriate, depending on the aims, approaches and actions in the support plan and learning and participation goals. Programs may also involve parents working with the child, or parents working with professionals. Implementation of individual child goals in a small group setting is likely to require a ratio of no fewer than 1 adult to 3 children.

The optimal location of early intervention for a child is likely to change over time and will be contingent on the degree to which the child is able to learn and participate in different settings. Key considerations include; working towards inclusion with typical peers in mainstream and community settings and independent participation, providing opportunities for interacting with peers who do not have autism, assisting transition to school and other settings, and maximising participation outcomes.

Professional development and training

Professionals should be trained to work with preschool children and in early intervention using family and child‐centred approaches (see above section about family‐centred approach), and have relevant and up‐to‐date training and experience in autism. Staff professional development, mentoring and coaching should be provided on a regular basis (for example, 2 workshops per annum with some ongoing coaching).

Parent Training and Development

Parent training and coaching are reported as an essential component of many evidence‐based interventions, in particular those focusing on younger children (toddlers) with autism. Specifically a parent training package (NAC, 2015), parent‐implemented intervention (Wong et al., 2014) and parent training in social communication (Weitlauf et al., 2014) have been supported as evidence based for children from birth (NAC, 2015).

Parent involvement potentially enhances learning opportunities and generalisation across home and community settings. The types of parent training that are supported by evidence ‘aim to increase the understanding of, and sensitivity and responsiveness to, the child’s communication and interaction’ (NICE guidelines, 2013). As with other support and intervention planning, parent values, preferences and capacity are key to decision making about the appropriateness and timing of including parent training and coaching. However, not all interventions based on parent training have an established or emerging evidence base. Those without an evidence base should not be implemented.

In addition to training for both professionals and parents in the implementation of specific interventions, information and training for both parents and professionals is required to facilitate an understanding of:

• heterogeneity and variability of autism including understanding of the likely developmental unevenness of autism over time
• the interaction between characteristics of autism and the environment
• the importance of developmental age and stage and comparison to typical development
• the limitations of research.

Peer Interventions

The provision of opportunities for engaging with typical peers is a common theme that is discussed in choice of setting and transition planning. Peer training package (NAC, 2015) and peer mediated instruction and interventions (Wong et al., 2014) are reported as evidence based. Structured play groups that include ‘the specific selection of typically developing peers to be in the group’ are also reported as an effective intervention (Wong et al., 2014). It is suggested that peer interventions are effective for children aged 3 and over (NAC, 2015).

Intervention Programs

Program Requirements

Intensity

In reviews and publications information about the usual intensity and duration of interventions was provided for comprehensive intervention programs (NAC, 2015). Also provided was information about child:professional ratios, including an expectation for 1:1 and small group sessions to be included (NAC, 2015). Little evidence was summarised about hours of intervention delivered by parents/carers, siblings or peers following training. More information is provided about intensity and child:professional ratios in the next section as a response to Q 2.

Quality

‘Quality of intervention is as important as quantity’ (Prior & Roberts, 2012).

Delivery

Ensure program or intervention is delivered with integrity. Interventions should have built-in fidelity measures. Manualisation increases confidence that programs are being implemented with fidelity. Staff and parent training (see above) which includes coaching and mentoring increases potential for an intervention program to be implemented with fidelity.

Evaluation

‘Evaluation of intervention outcomes should be built into early intervention programs using systematic assessment of the child’s social, cognitive and adaptive functioning before, during and at the end of the program.’ (Prior & Roberts, 2012). Once intervention is commenced ‘professionals have the responsibility to collect data to determine if an intervention is effective’ (NAC, 2015).

Program types

Comprehensive intervention programs

Three reviews identified evidence-based comprehensive interventions and of these 2 reported that intensive interventions that are based on applied behaviour analysis are effective for young children with autism (NAC, 2015; Weitlauf et al., 2014). In one report these interventions are referred to as Early Intensive Behavioral and Developmental Interventions (Weitlauf et al., 2014) and in the other as Comprehensive Behavioural Treatment for Young Children (NAC, 2015). Although a third review included evaluation of these types of programs they were not specifically included in the recommendations that were developed from that evidence review (NICE guidelines, 2013). The fourth review did not include programs for evaluation but directed the reader to an increasing number of ‘comprehensive treatment models’ that are characterised by ‘organization (i.e., around a conceptual framework), operationalization (i.e., procedures manualized), intensity (i.e., substantial number of hours per week), longevity (i.e., occur across 1 or more years), and breadth of outcome focus (i.e., multiple outcomes such as communication, behaviour, social competence targeted)’. Examples of the types of interventions considered as Early IntensiveBehavioural andDevelopmentalInterventions(Weitlaufet al., 2014)andComprehensive behaviouralTreatmentforYoungChildren(NAC, 2015)that havespecificnamesaretheEarlyStartDenverModel,TreatmentandEducationofAutisticChildrenwithCommunicationHandicapsandUniversityofCaliforniaLosAngeles(Lovaas)Program.PRTisalsoanevidence-based,behaviouralinterventionwhichincorporatesnaturalisticprinciplestoincreasechildmotivationinnaturalsettings(NAC, 2015; Wong et al., 2014). It may also be referred to as a strategy (see section above) that is part of an individualised program (Weitlauf et al., 2014). Other programs that do not have a specific name but were referred to as ‘intensive behavioural intervention’ or ‘early intensive intervention’ were also included (Weitlauftetal. ,2014). Play-based interventionswerealsoreportedtobeeffectiveespeciallyforyoungchildren.‘Resultsfromavarietyofplaybasedinterventionsalsosuggestthatyoun childrenoften displayshort-termimprovementsinearly play, imitation,languag eandsocialinteractionskills’(W e it l au fseta l .,2014,p.89 ).However,the strengtho ft heevidenc eatthispointin timeisl ow,e s pecially inrelationtolong-termeffectiveness( We i t lau fetal .,2014 )

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Other considerations

Co-occurring or related conditions

Co-occurring conditions such as intellectual disability, learning disabilities, attention deficit hyperactivity disorder, conduct disorders and epilepsy, should be noted and managed accordingly with reference to evidence-based interventions for each condition. These conditions occur with sufficient frequency in children with autism that professionals should have knowledge about them and know to refer for further diagnostic assessment if they are suspected. Professionals should also be aware of how these conditions can impact planned early-life supports and intervention approaches.

Co-morbidities such as anxiety, post-traumatic stress disorder, and constipation, should be identified and treated appropriately. Ensure that any co-morbidities are known and managed. Differential diagnosis may be challenging when symptoms of a comorbid disorder are assumed to be characteristics of autism. For example obsessions and panic attacks may be labelled as behaviour problems synonymous with ASD rather than being considered as indicating a comorbid anxiety disorder.

Evidence-based interventions for co-morbidities should be considered with knowledge of the individual’s autism characteristics. For example cognitive behaviour therapy, although an evidence-based intervention, will only be suitable for children who have sufficient language to understand and reflect on their experience.

Capacity building

Technical support, such as video conferencing, was suggested as a potentially useful way to extend the reach of an intervention and to build capacity. This is of particular relevance in the Australian context and for families living in regions which have low numbers of trained staff who are easily accessible in person.

Recommendations

1. these key elements be included in all support for young children with autism and their families

2. that programs offered to children and their families be assessed to ensure that they include these key elements

3. further work be undertaken to develop decision-making supports for families so they can take these key elements into account when choosing and prioritising interventions and support for their child and family.

Interventions that should not be used

Interventions that should not be used are shown in Table 4 (NICE guidelines 1.3.2 and 1.6).

Table 4: Interventions that should not be used for the problems listed

In line with the recommendations from the NAC (2015) report (see evidence‐based section above), interventions that are not yet evidence based or that evidence indicates are not effective and possibly harmful, should also not be used (Textbox 3).

Question 2. Individualised levels of early intervention support

What characteristics or other factors would assist in deciding individualised levels of early childhood intervention support needed for a child with autism?

Characteristics of each child and family

decisions about the level of intervention and support most likely to meet the needs of any one child with autism should take into account a range of characteristics of the child and family.

characteristics of the child include the child’s age and stage, the number and extent of the characteristics of autism identified in the child’s diagnostic assessment (the severity of the child’s autism), the presence or otherwise of intellectual disability or developmental delay and whether or not there are co‐occurring mental health conditions or other conditions (for example, attention deficit hyperactivity disorder).

characteristics of the family include the needs of a family because of the family structure (for example, whether there are siblings with additional needs), support available to the family and their ability to access resources (for example, is their location rural or remote) and the personal capacity and preference of parents.

The question of the influence of child characteristics on outcomes is not addressed in any detail in any of the reviews. The overarching emphasis in the reviews is that it is difficult to predict which children will respond well to intervention and an individual approach is recommended (NICE guidelines, 2013; Schreibman et al., 2015; Weitlauf et al., 2014; Wong et al., 2014). That said, the following was reported, although not in any detail:

• Children with greater baseline cognitive skills and higher adaptive behaviour scores at baseline have better outcomes from early intensive applied behaviour analysis (ABA)-based interventions (AHRQ).

• Younger children have better outcomes from early intensive ABA-based interventions (AHRQ).

• For young children (aged less than 2) a potential modifier of treatment efficacy includes baseline levels of object interest (AHRQ).

• Very young children may be particularly responsive to naturalistic behavioural interventions as these children are less likely to have established patterns of maladaptive behaviour (Schreibman et al., 2015).

• Among these very young children, Schreibman et al. (2015) reported reduced dependence on prompts, more natural sounding language, habituation to real world distractions and improved adult-child social interactions resulting from naturalistic behavioural interventions.

These findings are not sufficient to form a basis for decisions about levels of intervention. To date there is little evidence that will allow individualised levels of early childhood intervention support to be decided based on specific child characteristics, especially at the time of entry to early

Characteristics of Support or Early Intervention Programs

Duration and Hours

Described in Q 1 are the many facets of early intervention support that are important for children with autism and their family, and that can vary between children and families, and for one child and family over time. Also mentioned above, and in more detail in response to Q 3, is the need for individualised planning to achieve best practice in providing early intervention supports.

Two characteristics of early intervention support that are directly linked to ‘level of support’ are intensity and duration. The requirement that early intervention and supports should be sufficiently intense, timely, and that a sustained program should be offered if a child continues to have additional needs, is frequently endorsed. Table 5 lists the recommendations about intensity and duration from the 5 reviews and publications on which this report is based. Intensity and duration were only mentioned in relation to comprehensive programs, as shown, and so were not relevant to the Wong et al. review (Wong et al., 2014). Comprehensive programs were included in the review of evidence that formed the basis of the NICE guidelines, but no guidance about intensity and duration were made (NICE guidelines, 2013).

Table 5: Intensity and Duration of Early Intervention or Supports From Included Publications

| Review* | Program, Intervention Or Support | Intensity | Duration | Professional: Child Ratio | |———|—————————––|––––––––––|———————|–––––––––––––––––| | NAC | Comprehensive behaviours treatment for young children | 25–40 hours per week | 2–3 years | 1:1 and small group | | Wong et al. | No recommendation | No recommendation | Comprehensive programs not included in review | | AHRQ | Early behavioural and developmental intervention based on the principles of ABA | >15 hours per week | Not included in recommendation | Not included in recommendation | | NICE | No recommendation | No recommendation | No recommendation | | Schreibman et al. | No recommendation | No recommendation | No recommendation |

• Reviews are NAC = NAC, 2015; Wong et al. = Wong et al., 2014; AHRQ = Weitlauf et al., 2014; NICE = NICE guidelines, 2013; Schreibman et al. = Schreibman et al., 2015.

Other guidelines and systematic reviews identified by the initial search conducted for this report covered a wide range of intervention and support types and did not always discuss the intensity and duration of early intervention and supports (see Appendices 7-9).

Emerging evidence

Emerging evidence is in line with the recommendations made previously in Australia (Prior & Roberts, 2012) for between 15–25 hours of early intervention per week. Intervention should be available for at least 1 year, with review and changes to the level of support based on the recommendations made in response to Q 3. Support should be provided in encounters with professionals with training as described in Q 1 and delivered 1:1 or in small groups.

Other important factors that will influence decision making about level of support

Children are individuals, and each child will vary in comparison to other children with and without autism. Children will vary in their potential for learning at different time points. Put another way, the learning trajectory for individual children may rise, plateau or even fall at different stages of their development, and is likely to vary across developmental domains (for example, motor and communication) and even within one domain (for example, expressive and receptive language). For example an individual child may lag behind with language development but be advanced in gross motor abilities for their age or may plateau with language development and then make rapid gains.

The following factors should be taken into account when considering the level and type of support to be offered: - the developmental age and stage of the child and their readiness for an intervention in relation to the approach and intensity of the intervention - consideration of the zone of proximal development for a child, that is consideration of the child’s current developmental level, in order to design an intervention to move them into the next stage of development - response to intervention may be variable and is likely to be related to a child’s autism characteristics.

As discussed in Q1 and also in Q3, assessment of child and family characteristics remains the essential first step in the intervention and should be informed by the considerations outlined above.

Level of support expressed as hours and duration does not address the following issues: - what is the right level of training for the professionals/personnel providing early intervention support? Some information about this is available in Q1 but the recommended ratio of allied health professional time to other appropriately trained therapists/early intervention workers was not easy to distil from existing literature. - the number of hours that should be spent in 1:1 versus small groups led by professionals - intervention and support integrated into the child’s daily routines, usually by parents.

Other considerations

Currently there is a high level of community awareness about autism. Alongside this, it is widely known that opportunities to change development and behaviour exist and that children of a young age have brains that are more ‘neuroplastic’ than older children and adults. This places parents and carers under considerable pressure to ensure their child is diagnosed if they have autism so they can receive the intervention they need as early as possible.

At the time their child is diagnosed, if they are the first in the family to receive a diagnosis, parents know the least they will ever know about autism, and their child’s particular strengths and difficulties. They also know the least they will ever know about available services, their advantages

Summary and recommendations

Autism is a highly heterogeneous condition and children and families vary significantly in their characteristics, strengths, needs and capacity. Support and intervention need to be tailored to individual children and families.

A decision about the level of early intervention support is a funding (or package) decision made prior to commencement of a support program being implemented. Even if, as is ideal, detailed information about an individual child’s strengths and difficulties is available to those making this decision, there is not yet sufficient evidence upon which to base individualised decisions about the level of early intervention support for children with autism based on these characteristics.

Current best evidence to inform decisions about level of support is about intensity and duration of comprehensive interventions that have been shown to be effective. There are factors other than evidence that need to be taken into account when making decisions about level of intervention for young children, including ethical and equity considerations and long‐term impact of the way parents adjust and adapt to their child’s and their own individual needs.

We therefore recommend that children who have received a diagnosis of autism receive 20 hours per week of early intervention that involves interaction with them (focus on social communication), with review of this level of support after the first 12 months, or sooner if they fail to progress or make rapid progress. Review of progress should be more frequent (see Q 3) but review of the level of support is not needed more than 12 monthly unless otherwise indicated. In addition a package to support the child’s family (for example, counselling or respite) be provided.

Assessment of children and families to determine the best type, intensity and duration of intervention is an essential first step in the individual planning process.

The level of support comes with requirements that:

• the support for the child and family fulfils specifications provided in Q1
• the support is sufficiently flexible that it can be adapted and modified in line with the child and parents’ needs (see Q3).

Following an allocation of support at this level parents will still need support to choose the most appropriate type of intervention for their child, their situation and their preferences, and also to identify their family’s support needs.

Whether this recommendation is feasible in Australia today is outside the scope of this report.

Question 3. Factors that indicate a need for a modification to an

intervention program and timeframe for review of outcomes

What factors, including intervention outcomes would indicate a need for a modification, for example, an increase or decrease to intensity and/or type of intervention, once an early intervention program has been in place, and the recommended timeframe for review of outcomes?

Factors that could influence intensity or type of intervention

Review of the research reviews and available good practice guidelines identified only modest information about factors that could be used to guide modification to amount and type of intervention, summarised below (Textbox 4).

Textbox 4 Predictors of outcome: themes emerging from the key reviews or guidelines

• Greater parent involvement was associated with greater gains in joint attention and parent-child communication synchrony predicted better outcomes.
• Parents experiencing high levels of stress benefited most from home based early intervention.
• Children who responded well early in the intervention were found to make greater gains, i.e., most gains in first 6 months. However duration of treatment had an inconsistent effect.
• Greater baseline cognitive skills and higher adaptive behaviour scores are associated with better outcomes, however this was not consistent for all reviews or guidelines.
• Nonverbal cognitive ability was the most stable predictor of long-term outcomes
• Those with lower symptom severity improved more compared to those with high symptom severity.
• Social orienting in young children is a predictor of positive changes in ASD characteristics as measured on one diagnostic test. In young children, predominant object orientation predicted poorer social communication outcomes, those with more social orienting had better social communication outcomes. This was particularly the case for young children aged less than 2.
• Severity of autism symptoms predicts gains as a result of intervention, which implies that children with more severe autism will make less progress over a longer period of time. ‘Children with greater baseline cognitive skills and higher adaptive behaviour scores at baseline have better outcomes from early intensive ABA-based interventions’ (AHRQ). However it is not yet certain what early changes from baseline measurements of child characteristics might predict long-term outcome and response.(AHRQ).

(Bold text indicates themes that appeared in more than one review or guideline)

There was consensus that an individualised approach is required because of the variability in response to intervention between individuals and in any one individual over time. Valid, reliable standardised measures may provide some useful information about change in individuals over the long term, however the recommended method to measure intervention outcomes for a child/family is individualised goal setting as part of a systematic, collaborative (support team, family and child with autism), and individual planning process. This is the most effective way to measure change and

Good practice in individual planning

There is insufficient evidence to allow individualised intervention planning based on a few key characteristics, in a way that would lead to predictable and consistent changes in outcomes for every child in a predictable time period. The heterogeneity of autism and variability in response to intervention highlights the need for detailed individualised planning to provide a mechanism for ensuring that decisions can be made about appropriate increases and decreases to intensity and changes in type of intervention as needed for individual children.

Some key good practice principles relevant to individual planning are shown in Table 6.

Table 6 Principles informing the individual planning process

Table 7 Key recommendations and considerations for the individualised planning process

Key components Recommendations from the research literature*

Assessment for program planning

Schreibman et al.: Individual planning including Individualised intervention plans must include assessment of individual strengths and needs is a carefully designed assessment plan that associated with positive outcomes. includes baseline assessment and periodic Goals are typically developed with the use of follow-up assessments of any changes in core standardised assessment, observation and deficits. Baseline individual assessment of the developmental checklists, to help guide the clinician child is essential to identify strengths and in choosing developmentally appropriate treatment goals across domains and teaching targets.

Goal setting

Wong et al. describe a process for designing what Assessment informs the development of they call ‘technical eclectic/evidence-support program goals for the child and family, which programs’ based on Cox et al. (2013) and Odom et should be clearly defined and regularly al. (2012). ‘Such a process begins with the precise reviewed. Individual goal identification and identification of individual goals and their statement mechanisms for measuring whether these in an objective and measureable manner’.“ goals have been achieved is the optimal approach for making decisions about individual type and levels of early childhood intervention support for each child.

Implementation (choice of In this approach the goal and outcome then direct

program/strategy) the type of support needed (Wong et al.). Goals are developed then intervention and/or strategy chosen to implement to goals.

Data collection

Schreibman et al.: Effective practices must be Data collection underpins the capacity to systematically and objectively verified through data monitor and measure the progress of the child collected to track child progress. Data collection and family during the intervention process; this methods may include trial-by-trial recording of is essential to demonstrate how much learning children’s response to each opportunity, interval is taking place, and whether the intervention recording of child progress during a session, probes needs to be modified in some way to expand of specific behaviours, and use of curriculum-based or accelerate learning or to change programs assessments to examine progress at specific time for non-responders. periods (for example, monthly or quarterly). The method of data collection should be linked to child goals and then used to adapt the intervention to the specific needs of the child and family.

Evaluation

Wong et al.: The most important evidence Intervention programs need to be evaluated supporting an EBP at the individual student level is regularly to ensure that they continue to meet the progress the student makes when the EBP is the needs of the child. This process involves a implemented. This places great responsibility on the review of the intervention plan goals, review of practitioner to implement the EBP with fidelity, The child’s skills and needs to ensure that the collect data on student performance to evaluate the group is relevant, with collaborative success of the EBP in meeting the student’s goal. development of revised/new goals, as (Wong et al. p. 33). appropriate. Schreibman et al ‘The method of data collection Evaluation of individualised strategies can be should be linked to child goals and then used to achieved using strategies such as Goal adapt the intervention to the specific needs of the Attainment Scaling. This should be child and family.’ (p. 8) implemented as part of program development and review.

Key components

Recommendations from the research literature*

Review and revision

NAC: Programs should be reviewed and revised if goals have been met. A change should be made to an intervention program if it has been correctly implemented in the past and was not effective or had harmful side effects. A change should be made to an intervention program if the intervention is contraindicated based on other information (for example, the use of physical prompts for a child displaying self-injury when touched).

Individual variability

NICE guidelines (1.1.7) recommend referring At any age, development in children with autism is frequently uneven and may plateau or even regress for a period of time. 30% of children with autism between 12 and 24 months of age go through a period of regression, i.e. stasis or loss of social communication skills. In addition problem behaviours may develop which interfere with learning and goal attainment. These behaviours need to be specifically managed

Behaviours that challenge

NICE: If behaviour becomes challenging, reassess factors identified in the care plan and identify any new factors that could have resulted in the behaviour change. The plan could include interventions for behavioural problems, support for families and carers, and daily living and environmental adjustments, i.e. assess and modify environmental factors that may be triggering and/or maintaining the behaviour. Interventions should include:

• clearly identified target behaviour, agreed desired change & a way to measure change over time
• focus on outcomes linked to quality of life
• consideration of environmental factors
• clear intervention strategy appropriate for child
• specified timeframe for review and consideration of modifications to the intervention if expected change does not occur
• consistent application in all settings
• agreement about the intervention by all involved in the child’s care. If behaviour remains challenging consult senior colleagues and undertake a multidisciplinary review.

Timing and frequency of planning

Prior & Roberts.: The initial individual planning process, including assessment and collaborative development of plans should be completed within the first 3 months of the child enrolling in a service. An individual plan should be developed at least annually and a review of the intervention plan goals, the child’s skills and needs completed at least every 6 months to ensure that the program is relevant, with collaborative development of revised/new goals, as appropriate.

Coordination

NICE: A key worker/case manager should coordinate the IP process.

• Reviews are NAC = NAC, 2015; Wong et al. = Wong et al., 2014; NICE = NICE guidelines, 2013; Schreibman et al. = Schreibman et al., 2015; Prior &Roberts = Prior & Roberts, 2012.

Summary for Initial Assessment

For initial assessment for program development (Q2) and assessment for program outcomes review and revision (Q3), it is essential to include consideration of factors such as age and stage of child, provision of a program to meet the child’s strengths and needs, degree to which autism specific intervention is indicated compared to generic early intervention, likely optimal intensity and duration, optimal location of program (for example, home based versus centre based), family capacity and preferences, resources such as availability of early intervention services/programs, evidence base for a program or strategy, quality of program and accountability.

Recommendations

In the NDIA planning occurs at two levels:

• A plan developed by the NDIA planner. This individual plan will address long term goals for the child/family and describe in broad terms the intervention support needed and also address other needs, such as respite (see Q2) and provide the level of support.

• A plan developed by each child’s support program team. This individual plan directs the specific approaches and strategies used for support, and develops a framework for evaluating their success.

Individual Planning by the NDIA Planner

The planner will review the child/family plan every 12 months to assess the level and type of ongoing support required.

The planner will review the initial plan collaboratively with family and relevant professionals to assess the suitability of the intervention provided for the child and family with consideration given to factors outlined in Q1 and Q2. The detailed program review by the support program team (as outlined above) will inform the planner’s review.

The planner’s review should include review of child and family factors, changes, priorities, review of long term goals, resources, strengths and needs.

The planner will make recommendations about any changes required to the child’s plan including level and broad types of support required for the next 12 month period.

Planners will require professional development to ensure they have the skills to evaluate the quality of the plan and the review.

Individual planning by the Support Program Team

The service provider will coordinate the support program team and engage in a collaborative planning process within 3 months of enrolling a child. The planning process should involve all relevant people in the child’s environment including parents (support team) and to the degree possible the child him/herself. The plan should be reviewed every 6 months and revised annually.

The process should be team-based and involve practitioners with perspectives of health, education, communication and cognition as a minimum. In the Australian context there is an advantage in using consistent approaches — such as the Positive Partnerships planning matrix which embodies key elements endorsed as important by one or more of the included reports/reviews (available at www.positivepartnerships.com.au/planning-matrix).

The Positive Partnerships Planning Matrix was developed for school aged children; for very young children with autism change the domain heading

Learning Style/Information Processing to Development/Thinking and Learning

to include key development in areas such as toileting, motor skills, sleeping.

The planning process involves:

• Analysis of learning strengths and needs

• Assessment of child and family (see Q2). Some of this information will have been summarised by the planner. Detailed assessment of the child across all domains (see planning matrix for an example of this process). Assessment for program development should include the strengths of the individual which can potentially be utilised and extended. For example visual information processing skills can be developed to compensate for poor auditory comprehension.

Prioritising

Collaboratively prioritising areas to work on as identified in the assessment process, for example aspects of functional skill development (particularly social communication) and management of behaviours that challenge, are likely to be high priority.

Goal setting

Goal attainment scaling is potentially useful for developing and implementing, reviewing and revising program goals.

Development of an individual learning plan

Determination of intervention/program/strategies to achieve goals and resources required (including but not limited to funding).

Implementation of strategies/program

To achieve goal.

Evaluation

Regular monitoring of gains, losses, lack of change.

Review

Review by the program team will:

1. Allow timely modification of support based on changes — either improvements or new or persisting difficulties — in relation to the approaches and actions being used for early intervention, the location and the people involved.

2. Allow information sharing with those who allocate funding (packages) to ensure the appropriate level of funding is available for the child and family

3. Demonstrate early intervention supports are being offered in a way that is consistent with good practice.

Recommendations for best practice and research

All evidence summaries and guidelines have made recommendations for future research, identifying that we need to know more to both increase the strength of evidence in relation to current findings and to continue to improve the supports we are providing to children with autism and their families.

The research recommendations made by all the overseas based reviews, reports and guidelines included in this report are grouped and summarised in Appendix 10. As NDIA implements national provision of early support services for children with autism in Australia it is timely to consider how the NDIA and those who deliver services funded by them could contribute to this internationally relevant research agenda. Are there, for example, strategies that could be incorporated into early intervention that would provide the type of data needed to answer more than one of the questions posed? Which of these strategies would be necessary for ensuring best practice and what may need to be added for a research framework?

We propose that to achieve best practice and to advance knowledge all children have: - an individual plan for each child is created based on the matrix provided in Q3 - the individual plan includes goals and a method to assess whether each goal has been achieved – outcome measure - that whether a parent was involved in developing the individual plan, including outcomes, is documented - the individual plan includes the type(s) of intervention being used - that individual plan be reviewed at least every 6 months, or sooner if great gains are made, difficulties increase or new difficulties are identified - that outcomes be measured at least every 6 months to assess goals - that a functional assessment, assessment of adaptive behaviours and also an assessment of social communication be completed at least every year – as indicators of progress in key areas addressed by early intervention - that early intervention services provide the names, qualifications and experience of their early intervention professionals to NDIA - that NDIA is notified as to whether a key worker was assigned to a child and who they are, if one was assigned - that early intervention professionals keep a record of their early intervention encounters with each child, including information about: a. number of face‐to‐face hours per week b. whether the encounter was 1:1 or group based, and if group based the ratio of professionals to children c. the setting in which the intervention occurred d. whether a parent/carer or child care worker was being trained - that information is gathered from parents/carers about their experience of the interventions offered - that information is sought from parents of children with autism to understand their preference for and experience of parent engagement in early interventions offered - that information is collected about parent/carer health and wellbeing.

Planning for use of agreed mechanisms for monitoring outcomes over time is also needed.

Appendix 1 Stakeholder group meetings

Date Purpose of meeting

November 17, 2014 Stakeholders invited to participate in the project. All stakeholders who were invited accepted and signed a Confidentiality Agreement and Terms of Reference. Selection of the stakeholder group aimed to include key people who would offer expertise and/or lived experience relating to early intervention for autism. The group also aimed to include people from different personal or professional backgrounds, living in a range of locations across Australia.

December 2, 2014 Meeting to introduce the project, scope and discuss commitment and involvement in the project. The draft project brief was tabled at this meeting and feedback was sought with regards to the wording and content.

December 18, 2014 Meeting to discuss feedback obtained regarding the project brief. Project brief was finalised.

April 23, 2015 Meeting to discuss interim report. An interim report was sent to the stakeholder group prior to this meeting. Each attendee briefly presented their feedback on the interim report and then emailed written comments. This information was forwarded to the research consultants for consideration.

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Appendix 2 Project outline

Section A – Project questions and overview

Project Questions

The National Disability Insurance Agency (NDIA) seeks to answer 3 questions:

1. What is evidence‐based/evidence‐informed good practice for supports provided to children with autism and their families/usual carers ‐ with a focus on the autism specific elements?

2. What characteristics or other factors would assist in deciding individualised levels of early childhood intervention support needed for a child with autism?

3. What factors, including intervention outcomes would indicate a need for a modification, for example, an increase or decrease to intensity and/or type of intervention, once an early intervention program has been in place, and the recommended timeframe for review of outcomes?

Context and considerations

The NDIS aims to provide funding of early childhood supports for children with autism within a good practice framework and in a cost-effective manner, supporting the choice of well-informed families and/or carers. Funded supports aim to achieve relevant outcomes for children and their families, and should be seen in the context of potential outcomes, rather than only in terms of ‘hours’ or a specific type of intervention. The NDIA is not seeking to identify specific interventions, nor to rate interventions against each other; this project will provide guidance towards sound decision making. While some areas are identified as being ‘out of scope’, we realise there will be grey areas and information that is beyond the scope of the existing project will be identified for future possible work. The current project is not specifically a study of outcomes, nor is it a comprehensive study of interventions for autism; it is intended to inform practice within the context of the NDIS.

The proposed method allows for input from as broad a range of people as possible during the timeframe of the project. The stakeholder group will be kept informed of the process and invited to advise in response to progress reports and at other times, as relevant. In addition to the stakeholder group, a wider consultative group will include parents, researchers, practitioners and representatives of peak and local organisations. Steps will be taken to ensure the process is manageable in terms of number of requests and easy submission of information.

Important issues that are out of scope for this project

A number of questions and issues were raised by members of the stakeholder group that are outside the project brief set by NDIA executive team. Many of these issues are key to ensuring good outcomes for children, however are not within the scope of this project. They may be considered for future projects and a number of the issues are already being addressed by NDIA.

• Specific lists relating to the relative effectiveness of programs are not within the scope of this project. This would be considered as an additional project to help participants decide between different types of therapy/programs, however is not a part of the current brief from NDIA executive.

• Evidence base underpinning outcomes for families and usual carers: families and usual carers are clearly an integral part of any early intervention plan; however this project primarily focuses on outcomes for children with autism.

• Development, readiness and quality of the workforce to deliver good practice: another important issue to be addressed within broader workforce development, and possible future work specific to autism.

Phase 3

• Within 6 weeks of receipt of feedback from the stakeholder group the consultants present a draft final report
• Feedback is provided in a timely fashion and taken into account for the final report

Phase 4

• Within 2 weeks of receipt of feedback the final report is presented to the stakeholder group and the NDIA

Timetable

Jan 2015 Review stakeholder feedback Feb Start Project 9 Feb March Data searching and analysis April Interim report to stakeholder group 9 April Stakeholder feedback by 24 April

May Further analysis, preparation of recommendations/issues June Final report for consideration due 8 June Stakeholder feedback 19 June Final report June 30

Section C – Methods for answering the research questions

1. What is evidence‐based/evidence‐informed good practice for supports provided to children with autism and their families/usual carers ‐ with a focus on the autism specific elements?

Early Intervention for Children with Autism Spectrum Disorders: ‘Guidelines for Good Practice’ by Prior and Roberts was published in 2012 (https://www.dss.gov.au/sites/default/files/documents/11_2012/early_intervention_practice_guidli gines.pdf). Since then there have been detailed reviews to identify intervention programs and components that have been proven to be effective.

To answer these questions the consultants propose 3 steps: Step 1 (Q1)

• review evidence from systematic reviews that have been published since 2012 that provide information about key elements associated with effective early intervention programs. Key elements could include the types of problems that are addressed, the types of strategies that should be used, important issues about intervention setting and the types of professional skills involved.
• compare the key elements identified in these systematic reviews to the published guidelines by Prior and Roberts
• identify any points of difference by noting things that are missing from the published guidelines and things that are included that do not emerge from the evidence

Step 1 will focus on the key elements of effective early childhood intervention for autism, rather than the overall effectiveness of programs that have included key elements. The comparative effectiveness of differently named early childhood intervention programs for autism will not be reviewed.

Step 2 (Q1)

Search the academic literature and websites (autism‐related, government and non-government) for descriptions of key elements of good practice for early childhood intervention programs for autism and also review the evidence used to inform these.

Step 3 (Q1)

A wider group of people with expertise (the consultative group) in the field of early intervention for autism will be asked for their opinions of key elements for early intervention programs/approaches for autism. The stakeholder group will be consulted regarding the range of people to be invited, as well as any specific individuals. The consultative group will be contacted by email and an online survey provided for feedback. The survey will list key elements identified in the 2012 good practice guidelines and ask for a rating of the relevance of the identified elements from ‘not at all necessary’ to ‘must be included’ (or similar scale). The consultative group will also be asked to list any other elements that they feel should definitely be or definitely not be included.

Outcome (Q1)

The detailed methods of the proposed 3 steps and the findings will be reported. A summary of the key elements for early childhood intervention for autism will be proposed based on those findings.

Question 2. What characteristics or other factors would assist in deciding individualised levels of early childhood intervention support needed for a child with autism?

The consultants acknowledge that there are many factors to be taken into account when deciding individual levels of early childhood intervention support. Step 1, while important, is not the only factor that should be taken into account for each child. The consultants are also aware that there is likely to be incomplete evidence specific to Step 1, and so have developed Steps 2 and 3 to identify factors and existing processes of importance.

Step 1 (Q2)

-   review systematic reviews published since 2012 to identify if specific child or parent characteristics are known to be associated with differences in effectiveness of early childhood interventions, for child or parent/carer outcomes

Step 2 (Q2)

-   search published evidence for information about approaches to making decisions about individual level of early childhood intervention for children with autism, to identify if specific characteristics have been identified
-   search websites (autism‐related, government and non-government) for information about approaches to making decisions about individual level of early childhood intervention for children with autism, to identify if specific characteristics have been identified.

Step 3 (Q2)

A wider group of people with expertise (the consultative group) in the field of early intervention for autism will be asked for their opinions of key elements for early intervention programs/approaches for autism. The stakeholder group will be consulted regarding the range of people to be invited, as well as any specific individuals. The consultative group will be contacted by email and an online survey provided for feedback. The survey will list factors that have emerged from Steps 1 and 2 and ask them to rank them as “not at all important” to very important” (or similar scale). The consultative group will also be asked to list any other elements that they think are helpful and to describe how decisions about intervention level are made in the services that they have worked with.

3. What factors, including intervention outcomes would indicate a need for a modification, for example, an increase or decrease to intensity and/or type of intervention, once an early intervention program has been in place, and the recommended timeframe for review of outcomes?

The consultants will use a framework similar to individual planning and review of progress matrices as the framework for this question. As in Q 2 there is unlikely to be evidence that directly answers this question so the approach below has been developed.

Step 1 (Q3)

Review relevance of information gathered in response to Q 2, as it is likely that similar information for decision making about type and level of early intervention will apply. Identify possible differences in characteristics, such as response to intervention that will be available.

Step 2 (Q3)

• Review findings from reports and publications about outcome measures for autism
• Distil from these reports outcome measures that:
  • are reliable and valid
  • have relevance for parents of children with autism
  • have relevance for professionals
  • are suitable for use in an early childhood intervention setting
• Distil from these reports the most appropriate timing for review

Step 3 (Q3)

Present findings from Step 1 and 2 to the broader national and international consultative group to gather their perspectives about key elements of decision making about changes to level and type of early intervention for individual children.

Appendix 3 Interim report to stakeholders

Two consultants (Katrina Williams and Jaqueline Roberts) were involved in the production of the interim report.

Criteria for considering records for this review

To be included in this review, records needed to:

• Be either (a) a systematic review, or (b) an evidence‐based guideline. Comprehensive literature reviews were also included if the article was highly relevant to the project questions. Systematic reviews that included all types of studies (single case and/or group designs) were considered.
• Include children from birth to 8 years of age. In cases where records included participants from a wider age range, the record was included if 50% or more of the participants were under 8 years old.
• Include children with a diagnosis of ASD, or any of the diagnostic classification category that is included under the broad heading pervasive developmental disorder (PDD) in ICD‐10 or versions of DSM‐IV or earlier versions, such as Autistic Disorder, Childhood Autism, Asperger syndrome or disorder and PDD Not Otherwise Specified (NOS). In cases where systematic reviews involved children with other diagnoses, the record was included if 50% or more of the participants had ASD or PPD/PDD-NOS.
• Contain information that would assist in answering at least one of the project questions.

Records relating to the following topic areas were not included in this review.

• Medical procedures
• Medication/drug trials
• Dietary interventions
• Genetic studies, pre/post natal studies
• Diagnosis and screening of autism
• Animal studies
• Complementary/alternative treatments

Search methods for identification of studies

The nature of the project questions led the authors of this review to perform both broad database searches as well as searching for records from a wide array of other information sources. Search terms were adapted for each database or other information source. Appendices and detail the search strategies used.

Electronic database searches

We searched the following databases for English language records published between 1 January 2011 and 18 February 2015.

• Ovid MEDLINE
• ERIC (Educational Resources Information Centre)
• CINAHL (Cumulative Index to Nursing and Allied Health Literature). The CINAHL search included the Cochrane Database of Systematic Reviews, part of The Cochrane Library
• PubMed
• speechBITE
• OT seeker
• PEDro
• PsycINFO.

As this was an update of the Prior, Roberts, Williams, Rodger and Sutherland (2011) review, searches were limited to the period 2011–February 2015.

Searching other resources

The following information sources were examined for systematic reviews or guidelines.

• Google Scholar citations were searched for each included article to identify records that were not yet indexed in the databases listed above.
• Bibliographies of key records for citations were examined to search for records not published electronically.
• Online databases of journals that regularly publish articles relevant to early intervention autism were searched (2011–February 2015).
• Websites and other databases were searched. See Appendices 2 and 3 for details.

Data collection and analysis

Selection of studies

Search terms were selected and adapted for each database after consultation between 2 review authors (LC and KS). LC and KS performed the searches on each database independently. All citations generated through the database searching process were imported into Endnote X7. Records were then independently screened by the same 2 reviewers for inclusion by title and where available, abstract. The full text was retrieved for any records with insufficient information in the title or abstract to decide whether it should be included or not. The same reviewers then compared included records and any discrepancies between included records were discussed and inclusion/exclusion criteria re‐examined. This process resulted in 100% agreement between the 2 reviewers.

Data extraction and management

The full text versions of all included records were retrieved. Two evidence tables were created — one for systematic review literature and the other for guidelines.

Systematic review synthesis

LC and KS extracted and recorded the information in Table 8 from each systematic review. Where possible, data about children under 8 years of age were separated out from the larger data set.

Table 8 Information from each systematic review

Guideline synthesis

LC and KS extracted and recorded the following information from each guideline:

• Source — authors, funding, organisation
• Background — what prompted the development of the guideline
• Ages covered by the guideline
• Methodology underpinning the creation of the guideline
• Summary of recommendations
• Project questions — information/answers to the 3 project questions.

LC and KS read each article in full, extracting information that was potentially relevant to each project question.

Results of Searches

Multiple database searches retrieved 591 possible records for inclusion. There were 235 duplicates removed, with 356 potential records for the review. Screening by title or abstract resulted in 252 records being excluded. There were 104 records retained and the full text was retrieved for each of these records. A further 79 records were excluded when the full text was examined, with 25 records included in the final set from database searches. There were an additional 7 relevant records found by searching other information sources. Six of these records were guidelines and 1 record was a comprehensive overview of behaviourally based interventions for autism and all were found on

websites Figure 1 is a flow chart showing the search and synthesis described above.

     Database results from MEDLINE,
  PubMed, ERIC, CINAHL, PsychINFO,
     speechBITE, OTseeker & PEDro
                 (n=591)

                                                             Duplicates removed
                                                              (n=235)

     Records retained after removing
                  duplicates
                 (n= 356)
                                                  Excluded – screened by title or
                                                                      abstract
                                                              (n= 252)
    Records retained after excluding by
                        title or abstract
                 (n= 104)
                                                  Excluded – screened by full text
                                                                 review
                                                                (n=79)
       Included records from database
    searches retained after excluding by
            title, abstract or full text retrieval
                  (n=25)

        Additional results from manual
                searching
                   (n=7)

Figure 1 Selection of studies flow diagram

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Extraction of key elements

Question 1

One consultant (MP) reviewed information extracted from all the papers/resources found and compiled a list of dominant themes for evidence-based/evidence-informed good practice for supports for children with autism and their families/usual carers—with a focus on the autism-specific elements. Those dominant themes were then cross-referenced against the NICE guidelines (2013) and the Weitlauf et al. (2014) by 1 consultant (KW) to identify if there were dominant themes that emerged from all the evidence gathered that were not addressed in the NICE guidelines (2013) or Weitlauf et al. (2014). Another consultant (JR) also assessed the relevance of emerging themes to early intervention.

A final list of key elements, with reference to the source, was then compiled. Consensus amongst all 2 consultants about the relevance of all the key elements included was achieved.

Questions 2 and 3

Two consultants (MP & JR) reviewed all the information extracted from all the papers/resources found and identified relevant findings. The AHRQ report was reviewed and relevant information extracted by 2 consultants (KW & JR). The 2 sources were combined for both Q2 and Q3 by 1 consultant (JR). Little evidence available relevant to these 2 questions was found and the 2 consultants reached consensus about the need to develop an approach that would provide guidance in an evidence-poor environment.

From NICE Guidelines (2013)

Key Elements

Professional and Care Process Elements

1. Professionals need to receive appropriate training to have ‘autism awareness and skills in managing autism’. The specific components of this training are listed below.

• the nature and course of autism

• the nature and course of behaviour that challenges in children and young people with autism

• recognition of common coexisting conditions, including:

  • mental health problems such as anxiety and depression

  • physical health problems such as epilepsy

  • sleep problems

  • other neurodevelopmental conditions such as attention deficit hyperactivity disorder (ADHD)

• the importance of key transition points, such as changing schools or health or social care services

• the child or young person’s experience of autism and its impact on them

• the impact of autism on the family (including siblings) or carers

• the impact of the social and physical environment on the child or young person

• how to assess risk (including self-harm, harm to others, self-neglect, breakdown of family or residential support, exploitation or abuse by others) and develop a risk management plan

• the changing needs that arise with puberty (including the child or young person’s understanding of intimate relationships and related problems that may occur, for example, misunderstanding the behaviour of others)

• how to provide individualised care and support and ensure a consistent approach is used across all settings

• skills for communicating with a child or young person with autism.

(taken from Knowledge and competence of health and social care professionals, 1.1.8 https://www.nice.org.uk/guidance/cg170/chapter/1-recommendations#families-and-carers-2). Clearly the age and stage of the individual with autism will determine the relative focus of the training and expertise of those working with the individual and their family, however it is important that staff working with individuals with autism at all stages including early intervention have an understanding that this is a life long condition.

2. Local early intervention teams should produce local protocols to ensure shared care with education and health (adapted from 1.1.6 bullet point 10, second sub-point https://www.nice.org.uk/guidance/cg170/chapter/1-recommendations#families-and-carers-2)

3. Services should be culturally appropriate and consider family values as described in the section called ‘Diversity, equality and language’ of the NICE guidelines (2013) autism

Involvement of parents and families

1. Involvement in decision making

“Provide children and young people with autism, and their families and carers, with information about autism and its management and the support available on an ongoing basis, suitable for the child or young person’s needs and developmental level. This may include:

• contact details for local and national organisations that can provide:
• support and an opportunity to meet other people, including families or carers, with experience of autism
• information on courses about autism
• advice on welfare benefits, rights and entitlements
• information about educational and social support and leisure activities
• information about services and treatments available
• information to help prepare for the future, for example, transition to primary school.

“Explore with children and young people with autism, and their families and carers, whether they want to be involved in shared decision-making and continue to explore these issues at regular intervals. If children and young people express interest, offer a collaborative approach to treatment and care that takes their preferences into account.” (extract from https://www.nice.org.uk/guidance/cg170/chapter/1-recommendations#families-and-carers-2, items 1.1.11 & 1.1.13)

2. Provide support for families (including siblings) and carers by providing information that takes into account their preferences, about how to access:

a. respite care and child care b. an assessment of their own physical and mental health needs c. personal, social and emotional support d. practical support in their caring role, including emergency plans (adapted from 1.2 https://www.nice.org.uk/guidance/cg170/chapter/1-recommendations #families-and-carers-2)

3. Parents and others are agents for intervention: ‘aim to increase the parents’, carers’, teachers’ or peers’ understanding of, and sensitivity and responsiveness to, the child or

Young Person’s Patterns Of Communication And Interaction’ (psychosocial Interventions 1.3.1 https://www.nice.org.uk/guidance/cg170/chapter/1-recommendations#specific- Interventions-for-the-core-Features-of-autism)

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and carers

services have

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Appendix 5

A list from NAC of evidence based ‘behavioural interventions’ used alone or in combination

Identified component(s)

• Joint Attention Intervention
• Chaining
• Differential Observing Response (DOR)
• Forward Chaining
• Function-based Intervention
• Imitation Training
• Reinforcement Schedule (schedule specified)
• Response Interruption and Redirection (RIRD)
• Repeated Practice
• Standard Echoic Training
• Extinction + Reinforcement
• Function-based Intervention + Prompts
• Sign Extinction + Differential Reinforcement of AlternativeBehaviour (DRA)
• Stimulus Fading + Positive Reinforcement
• Choice + Task Interspersal + Positive Reinforcement
• Discrete-trial Training + Natural Consequences + Error Correction
• Most to Least Prompting + Natural Consequences + Activity Interspersal
• Preteaching + Prompting + Positive Reinforcement
• Combined Task Direction + Contingent Reinforcement + PhysicalPrompts + Stimulus Fading
• Modelling + Prompting + Reinforcement + Redirection + Abolishing Operation Component
• Prompt Delay + Auditory Scripts + Manual Prompts + BehaviouralRehearsal + Tokens
• Reinforcement Pairing + Habit Reversal + GaitSpot Squeakers + Differential Reinforcementof Incompatible Behaviour (DRI)
• Video Modelling + DRA + Escape Extinction +Stimulus Fading + Photo Prompting
• Video Modelling + Highlighting + Prompting/Fading + Reinforcement
• Video Modelling + Photo Prompts + Contact Desensitisation + Shaping + DifferentialReinforcement of Other Behaviour (DRO) + Escape Extinction
• Written Task Analysis + SocialScripts +Prompting + Self-monitoring + Fading

Appendix 6

Emerging interventions from Wong et al. (2014)

• Augmentative and Alternative Communication Devices
• Developmental Relationship-based Treatment
• Exercise
• Exposure Package
• Functional Communication Training
• Imitation-based Intervention
• Initiation Training
• Language Training (Production & Understanding)
• Massage Therapy
• Multi-component Package
• Music Therapy
• Picture Exchange Communication System
• Reductive Package
• Sign Instruction
• Social Communication Intervention
• Structured Teaching
• Technology-based Intervention
• Theory of Mind Training

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Page 76

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Reference list

AMAZE, formerly Autism Victoria (date). The Diagnostic Process for Children, Adolescents and Adults Referred for Assessment of Autism Spectrum Disorders. Retrieved from http://www.autismvictoria.org.au/news/documents/ASSESSMENTGUIDELINESFINAL.pdf

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing.

Belgian Health Care Knowledge Centre (2014). Management of autism in children and young people: a good clinical practice guideline. Retrieved from https://kce.fgov.be/publication/report/management-of-autism-in-children-and-young- person-a-good-clinical-practice-guidel#.VZoLP-faQt8

Bradshaw, J., Steiner, A. M., Gengoux, G., & Koegel, L. K. (2014). Feasibility and Effectiveness of Very Early Intervention for Infants At-Risk for Autism Spectrum Disorder: A Systematic Review. Journal of Autism and Developmental Disorders. doi: 10.1007/s10803-014-2235-2

Cox, A. W., Brock, M. E., Odom, S. L., Rogers, S. J., Sullivan, L. H., Tuchman-Ginsberg, L.,… Collet-Klingenberg, L. (2013). National Professional Development Center on ASD: An emerging national educational strategy. In P. Doehring (Ed.), Autism services across America (pp. 249- 266). Baltimore, MD: Brookes.

Dawson, G., & Burner, K. (2011). Behavioral interventions in children and adolescents with autism spectrum disorder: a review of recent findings. Current Opinion in Pediatrics, 23(6), 616-620.

Estes, A., Munson, J., Rogers, S. J., Greenson, J., Winter, J., & Dawson, G. (2015). Long-Term Outcomes of Early Intervention in 6-Year-Old Children With Autism Spectrum Disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 54(7), 580-587. doi: 10.1016/j.jaac.2015.04.005

Fletcher-Watson, S., McConnell, F., Manola, E., & McConachie, H. (2014). Interventions based on the Theory of Mind cognitive model for autism spectrum disorder (ASD). Cochrane Database of Systematic Reviews(3).

Fleury, V. P., Thompson, J. L., & Wong, C. (2015). Learning How to Be a Student: An Overview of Instructional Practices Targeting School Readiness Skills for Preschoolers With Autism Spectrum Disorder. Behavior Modification, 39(1), 69-97. doi: 10.1177/0145445514551384

Ganz, J. B., Davis, J. L., Lund, E. M., Goodwyn, F. D., & Simpson, R. L. (2012). Meta-analysis of PECS with individuals with ASD: Investigation of targeted versus non-targeted outcomes, participant characteristics, and implementation phase. Research in Developmental Disabilities, 33(2), 406-418.

Ganz, J. B., Earles-Vollrath, T. L., Mason, R. A., Rispoli, M. J., Heath, A. K., & Parker, R. I. (2011) An aggregate study of single-case research involving aided AAC: Participant characteristics of individuals with autism spectrum disorders.

References

Jung, S., & Sainato, D. M. (2013). Teaching play skills to young children with autism. Journal of Intellectual and Developmental Disability, 38(1), 74-90.

Kasari, C., & Patterson, S. (2012). Interventions addressing social impairment in autism. Current Psychiatry Reports, 14(6), 713-725.

Knight, V., McKissick, B., & Saunders, A. (2013). A Review of Technology-Based Interventions to Teach Academic Skills to Students with Autism Spectrum Disorder. Journal of Autism & Developmental Disorders, 43(11), 2628-2648. doi: 10.1007/s10803-013-1814-y

Knight, V., Sartini, E., & Spriggs, A. (2015). Evaluating Visual Activity Schedules as Evidence-Based Practice for Individuals with Autism Spectrum Disorders. Journal of Autism & Developmental Disorders, 45(1), 157-178. doi: 10.1007/s10803-014-2201-z

Lang, R., O’Reilly, M., Healy, O., Rispoli, M., Lydon, H., Streusand, W., et al. (2012). Sensory integration therapy for autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 6(3), 1004-1018.

Lequia, J., Machalicek, W., & Rispoli, M. J. (2012). Effects of Activity Schedules on Challenging Behavior Exhibited in Children with Autism Spectrum Disorders: A Systematic Review. [Information Analyses Journal Articles Reports - Evaluative]. Research in Autism Spectrum Disorders, 6(1), 480-492.

Lieberman, R. G., & Yoder, P. (2012). Play and Communication in Children with Autism Spectrum Disorder: A Framework for Early Intervention. [Journal Articles Reports - Evaluative]. Journal of Early Intervention, 34(2), 82-103.

Maglione, M. A., Gans, D., Das, L., Timbie, J., & Kasari, C. (2012). Nonmedical Interventions for Children With ASD: Recommended Guidelines and Further Research Needs. Pediatrics, 130, S169-S178. doi: 10.1542/peds.2012-0900O

Morgan, L. J., Rubin, E., Coleman, J. J., Frymark, T., Wang, B. P., & Cannon, L. J. (2014). Impact of social communication interventions on infants and toddlers with or at-risk for autism: A systematic review. Focus on Autism and Other Developmental Disabilities, 29(4), 246-256.

National Autism Center (NAC) (2015). Findings and conclusions: National Standards Project, Phase 2. Retrieved from http://www.nationalautismcenter.org/national-standards-project/phase-2/

National Collaborating Centre for Mental Health (2013). Autism. The Management and Support of Children and Young People on the Autism Spectrum. London (UK): National Institute for Health and Care Excellence (NICE). Retrieved from http://www.nice.org.uk/guidance/cg170

National Guideline, C. Best evidence statement (BESt). Adding home based services to complement center based intervention for children with autism Retrieved 7/6/2015, from http://www.guideline.gov/content.aspx?id=44348

Oono, I. P., Honey, E. J., & McConachie, H. (2013). Parent-mediated early intervention for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews(4).

Page 86

• Odom, S. L., Hume, K., Boyd, B., & Stabel, A. (2012). Moving beyond the intensive behavior therapy vs. eclectic dichotomy: Evidence-based and individualized program for students with autism. Behavior Modification, 36(3), 270-297.

• Orinstein, A. J., Helt, M., Troyb, E., Tyson, K. E., Barton, M. L., Eigsti, I.-M., et al. (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of Developmental & Behavioral Pediatrics, 35(4), 247-256.

• Patterson, S. Y., Smith, V., & Mirenda, P. (2012). A systematic review of training programs for parents of children with autism spectrum disorders: single subject contributions. [Research Support, Non-U.S. Gov’t Review]. Autism, 16(5), 498-522.

• Peters-Scheffer, N., Didden, R., Korzilius, H., & Sturmey, P. (2011). A Meta-Analytic Study on the Effectiveness of Comprehensive ABA-Based Early Intervention Programs for Children with Autism Spectrum Disorders.

• Prior, M. & Roberts, J. (2012). Early Intervention for Children with Autism Spectrum Disorders: ‘Guidelines for Good Practice’. Retrieved from https://www.dss.gov.au/our- responsibilities/disability-and-carers/program-services/for-people-with-disability/early- intervention-for-children-with-autism-spectrum-disorders-guidelines-for-good-practice-2012

• Raulston, T., Carnett, A., Lang, R., Tostanoski, A., Lee, A., Machalicek, W., et al. (2013). Teaching individuals with autism spectrum disorder to ask questions: A systematic review. Research in Autism Spectrum Disorders, 7(7), 866-878.

• Reichow, B., Barton, E. E., Boyd, B. A., & Hume, K. (2012). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database of Systematic Reviews(10).

• Rispoli, M., Neely, L., Lang, R., & Ganz, J. (2011). Training paraprofessionals to implement interventions for people autism spectrum disorders: A systematic review. Developmental Neurorehabilitation, 14(6), 378-388.

• Roberts, J., Williams, K., Carter, M., Evans, D., Parmenter, T., Silove, N., et al. (2011). A randomised controlled trial of two early intervention programs for young children with autism: Centre- based with parent program and home-based. Research in Autism Spectrum Disorders, 5(4), 1553-1566.

• Rogers, S. J., Estes, A., Lord, C., Vismara, L., Winter, J., Fitzpatrick, A., et al. (2012). Effects of a brief Early Start Denver Model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 51(10), 1052-1065.

• Schreibman, L., Dawson, G., Stahmer, A. C., Landa, R., Rogers, S. J., McGee, G. G., & Halladay, A. (2015). Naturalistic Developmental Behavioral Interventions: Empirically Validated Treatments for Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 1-18.

Shire, S.

Y., & Kasari, C. (2014). Train the trainer effectiveness trials of behavioral intervention for individuals with autism: a systematic review. [Review]. American Journal on Intellectual & Developmental Disabilities,119(5), 436-451.

Best Practices for Teaching Joint Attention

White, P. J., O’Reilly, M., Streusand, W., Levine, A., Sigafoos, J., Lancioni, G., et al. (2011). Best practices for teaching joint attention: A systematic review of the intervention literature. Research in Autism Spectrum Disorders, 5(4), 1283-1295.

Wong, C., Odom, S. L., Hume, K. Cox, A. W., Fettig, A., Kucharczyk, S., … Schultz, T. R. (2014). Evidence-based practices for children, youth, and young adults with Autism Spectrum Disorder. Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, Autism Evidence-Based Practice Review Group.

Wong, C., Odom, S. L., Hume, K. A., Cox, A. W., Fettig, A., Kucharczyk, S., et al. (2015). Evidence- Based Practices for Children, Youth, and Young Adults with Autism Spectrum Disorder: A Comprehensive Review. Journal of Autism and Developmental Disorders, 1-16.

World Health Organization. (1992). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organization.

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