a summary of the research findings pertinent to assessing eligibility and non-eligibility of early intervention program proposals
a summary of the feedback coming from consultations with stakeholders and peak bodies, and a synthesis of their views and suggestions
a proposal of strategies for the future to enhance the choice of valid programs and providers (carried out through FaHCSIA)
advice on methods to keep up to date with the emerging literature on early intervention for ASD
guidelines to underpin decision making on program/provider approval and recommendations for the process to achieve this aim, including guidelines to enhance understanding of the approval standards.
Key Considerations and Scope of Review
The focus of this report is early intervention (EI) for children with ASD up to the age of 7 years, which is the age limit for eligibility for receiving access to early intervention funding and services under the HCWA EI Services Provider Panel. Research into interventions for older age groups of children and adults with ASD has not been reviewed.
This review focuses on learning-based interventions for children under 7 years old, as these are the interventions funded through the HCWA EI Provider Panel. Hence interventions that are medically based and interventions involving Complementary and Alternative Medicines (CAMs) are not addressed in this report.
Interventions for young children with autism and their families that are based on learning can be described as:
primarily therapy based
family based, and/or
See Appendix B for a description of the classification system used to group learning-based interventions, with examples.
The ‘intensity’ of a program refers to the number of hours of treatment the child receives per week as well as the intensity of training, curriculum, evaluation, planning, and coordination. A total of 15–25 hours per week over 2–3 years is generally recommended for autism early intervention in the research literature (Roberts & Prior 2006) with some programs recommending as much as 40 hours per week.
The concept of intensity, as discussed in the research, is complex and not necessarily conveyed solely by the ‘number of hours of intervention per week’. Quality is as important as quantity and more challenging to measure. Focusing exclusively on the number of hours per week detracts from the amount of actual meaningful engagement, which is the key factor (Marcus, Garfinkle & Wolery 2001).
Note that there is no reliable evidence that ‘recovery’ or ‘cure’ occurs as a result of treatments or interventions for children with ASD. However it is clear and well supported by the evidence base, that with appropriate intervention, children with autism continue to develop and to learn behaviours that will better equip them for life.
Part 1 – Review
Autism spectrum disorders (ASD) are characterised by qualitative impairments in social interaction and communication skills, as well as stereotypic behaviours and limited activities and interests. While ASD has become a commonly used term in clinical practice, this nomenclature is not officially recognised by current mainstream disease classification systems, such as the Diagnostic and Statistical Manual of Mental Disorders fourth edition or fourth edition text revision (DSM-IV, DSM-IV-TR) (APA 1994, APA 2000), and the International Classification of Diseases (ICD-10) (WHO 1993). However the concept of a spectrum of autistic disorders is proposed to be integral to the next iteration of the Diagnostic and Statistical Manual of Mental Disorders (DSM), the DSM-V.
ASD is generally considered to include autism, defined in the DSM, third edition (DSM-III) (APA 1980) as ‘infantile autism’, in the third edition revised (DSM-IIIR) (APA 1987) and fourth edition (DSM-IV) (APA 1994) as Autistic Disorder and in ICD-10 (WHO 1993) as Classical Autism. Also included in the term ASD are the diagnoses:
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)
'other pervasive developmental disorders'
'pervasive developmental disorder, unspecified’
Asperger’s syndrome or Asperger’s disorder
It is expected that with the release of DSM-V in 2013 (www.dsm5.org) the term ‘ASD’ will become the official diagnostic term and all the other diagnostic labels listed above are unlikely to be part of that classification system and therefore will not be commonly used in diagnosis or reporting.
1.1.1 Heterogeneity of ASD
Autism is a spectrum disorder encompassing a range of individuals with characteristics varying in severity across domains of cognitive, communication and social development, and restricted interests/repetitive behaviour. At an individual level this means that children diagnosed with autism are as different from each other as are children who are developing typically. There is an obvious tension between describing children who are similar in their needs and outcomes versus ensuring all children with problems of a similar type are identified. Another tension exists between the requirements of a classification system to provide diagnostic labels versus a dimensional description of strengths, weaknesses and function that is thought useful in developmental disability internationally (World Health Organisation 2007). This tension is unlikely to be resolved while the aetiology of autism is uncertain and while the observation of behaviour and assessment of function remains the mainstay of diagnosis. However, classifications are of great relevance to those organisations funding intervention services for children with ASD and other disabilities, as they impact upon both the numbers of children identified and the type and duration of interventions that need to be available (Szatmari 2011).
The range of autism increased significantly with the addition of Asperger’s Disorder in the 1990s and now includes a greater proportion of cognitively able individuals. Several established interventions for autism, e.g. ‘The Me Program’ (Lovas 1981) and TEACCH, (Schopler, Mesibov & Baker 1982), were developed for what is now a sub-group on the autism spectrum (Autistic Disorder). Each child with an ASD is an individual. Hence in addition to variation across developmental domains there is variation depending on age, maturity and variation of family background and cultural expectations. The challenge for intervention is to be flexible enough to take into account individual patterns of cognitive and language skills, social abilities, degree of rigidity and stereotyped behaviour, restricted interests, co-morbid conditions and family and environmental factors.
1.1.2 Diagnosis and assessment
Though diagnosis is clearly important, it is not the primary focus of the Early Intervention (EI) component of the HCWA Package. Children need to be diagnosed as having an ASD in order to access EI funding under the HCWA Package. Diagnostic assessment needs to be conducted by suitably qualified teams of professionals working collaboratively with families and utilising accepted good practice in autism diagnosis. Diagnostic assessment is funded under the Medicare component of the HCWA Package.
Assessment of strengths and needs across the core domains of autism for the purpose of program development and evaluation needs to be conducted for each child as part of a tailored, individualised approach to intervention. This is not the same as a diagnostic assessment, although one should inform the other. Individual assessment for program development purposes may involve the completion of checklists—most established interventions for children with autism have instruments available for this purpose. Good practice dictates that:
an individualised approach is central to intervention for children with autism
goals for intervention need to be developed and prioritised via an Individual Plan (IP)
when the program is implemented it must be reviewed and revised as required. A useful tool for this purpose, a planning matrix, is described in Appendix C.
1.1.3 Incidence and prevalence
Estimates of the prevalence of ASD using the DSM-III, DSM-IIIR DSM-IV or ICD-10 diagnostic classification systems, from published synthesised literature up to April 2004 varied between 3 and 82 per 10,000 (Williams & Brayne 2006) and from 2000–07 between 16 and 181 per 10,000 (Fombonne 2009) and are still subject to change. Males are affected about four times more frequently than females.
Most recent published national data for Australia, estimated the prevalence of children accessing Centrelink funding with a diagnosis of autism as 47.2 per 10,000 in 2005 in 6–12 year olds, and with a diagnosis of Asperger Disorder of 15.3 per 10,000 (Williams et al. 2008). Centrelink prevalence estimates probably do not include children with other ASDs (PDD-NOS, Atypical autism and other related diagnoses).
1.1.4 Collaborative multidisciplinary practice
Autism Spectrum Disorders are multifaceted conditions encompassing a range of core features as well as a number of associated features (intellectual disability in some children, sensory processing difficulties, anxiety and challenging behaviours). A single discipline or approach is unlikely to address all the intervention needs of the child and their family in a holistic and appropriate way. Similarly, accessing a number of therapists (such as speech pathologists or occupational therapists) in isolation, without coordination and cooperation between professionals and families, may lead to lack of program coordination, more stress for parents, and reduced opportunities for generalisation of intervention across people and settings. Conversely, collaborative multidisciplinary approaches result in more effective outcomes for clients and the ability to focus on the ‘whole child’ and their individual characteristics and needs, rather than a single area of functioning (Nicholson, Artz, Armitage & Fagan 2000). This is particularly the case in complex difficulties such as ASD, as described by Jordan (2001): “Autism … is a condition that straddles so many different disciplines in its definitions, education and care that it is inevitably best approached in a multidisciplinary way” (p.5).
Ideally, children with autism should be able to access intervention that is individualised to all their areas of strengths and needs. Generally, this will be best developed and delivered by a collaborative, multidisciplinary team, or in some cases, by utilising a trans disciplinary model where interventions are developed and supported by a team but delivered by one or two professionals who work across all developmental areas. A collaborative multidisciplinary team may consist of a number of professionals including educators, speech pathologists, occupational therapists and psychologists, who provide collaborative assessments, jointly set goals and develop Individual Plans, provide intervention, and review progress. The Planning Matrix described in Appendix C is a useful tool to facilitate multidisciplinary program development and for including input from families.
1.1.5 Working with families
Working with families and ensuring they are integrally involved with goal setting, planning, intervention and evaluation of any program or intervention is crucial. To do this, parents require emotional support, information, advice, and training in working with their children. Families are the most significant constant in a child’s life and it is important that they are engaged in the process, to the level they desire, to reduce stress, increase family functioning, and to maximise children’s skills in a meaningful social context (Keen 2007; Beatson 2005). The following points require consideration:
Stress and grief: It is recognised that families of children with autism may experience greater stress than families of children with other disabilities and families of children without a disability (Honey, Hastings & McConachie 2005). Grief also impacts on families, particularly after a diagnosis has been made, and may resurface as children grow older and during transition points, such as school entry. Service providers should be aware of the physical and psychological impact of long-term stress and grief on parents.
Supporting decision making: Families require support to make good decisions about which services to access, as well as the content of the intervention as it relates to their child. Historically, professionals alone were seen as having the expertise to make decisions about the needs of a child with autism. In contrast, the expertise and wishes of the family are now seen as central to the decision-making process (Keen 2007). It is clear, however, that making decisions about services can be difficult and distressing and many parents feel that, while they are experts about their children, they do not have the knowledge to make decisions about which course of intervention to take (Valentine 2010). Other parents may become very active and engaged in seeking intervention, and in decision making, but will continue to require support to engage with service providers and develop effective partnerships. Effective service delivery must accommodate the differing needs of families (Valentine 2010).
Cultural diversity: Cultural differences need to be considered by all those working with the family as this will impact on their decision-making process, the choices that are made, and the way they engage with the interventions provided (Mandell & Novak 2005; Trembath, Balandin & Rossi 2005; Vigil & Hwa-Froelich 2004). The needs of families from culturally and linguistically diverse backgrounds must be considered when providing intervention programs and family support.
Family centred practice: Family centred practice is an essential element of good practice in early intervention provision. Family centred practice includes acknowledging the uniqueness of each family, enhancing parental competencies, involving families in programming decisions, and developing collaborative relationships between parents and professionals (Beatson 2006).
1.1.6 Program fidelity and outcomes
‘Fidelity’ refers to the confidence with which we can say that the program delivered was the one that was described in the application for funding support, and that all program features have been applied consistently, as specified. Firstly, a detailed description of the program needs to be available, sufficient to allow replication of the intervention. This is often found in a treatment manual. Secondly, checks need to be built into the research to establish that the program was carried out in a manner consistent with the manual.
1.1.7 Challenges inherent in measuring outcomes
Variability in the reported outcome measures makes it difficult to compare studies of different treatment evaluations. It is also problematic to disentangle clinical significance versus statistical significance, and to be sure that positive changes reported are not due to chance or to confounding factors when multiple outcome measures are used.
The extent to which sound research criteria are met, in particular the replication of the research findings by different researchers, is an indication of the confidence one can have in the findings. Unfortunately in the field of autism there is a tendency for research containing major errors in the selection and interpretation of the evidence to be used to substantiate claims for a particular intervention, or in some cases claims are made with a “flagrant perversion or disregard for evidence” (Schopler et al. 2001, p.13).
The challenges in this review are to summarise the available research evidence, to consider the quality and fidelity of the evidence, and where possible, to suggest how the evidence relates to the programs available in Australia.
1.1.8 Issue of timing of intervention
The recent growth in research and knowledge about intervention practice and progress reinforces the importance of intervention in early childhood development. While there is no doubt that appropriate intervention can improve outcomes for children and adults with autism at any age, the sooner an intervention commences the better. One advantage of starting intervention early is the prevention of the development of secondary characteristics of autism such as challenging behaviours and co-morbid mental health problems like anxiety. The target group for the early intervention funding provided by FaHCSIA through the HCWA Package is children under 7 years old.