11.1
This chapter examines the importance of evidence-based early intervention and support for autistic children, including through the Early Childhood Approach. It also provides a snapshot of some of the barriers identified by stakeholders, including delayed access to timely diagnosis and services, as well as confusion about the availability and appropriateness of early intervention.
11.2
The chapter is not intended to provide a comprehensive overview or assessment of the different approaches to early intervention but looks at the need to provide the best life outcomes for autistic children and young people.
Early intervention and support services
11.3
There are a variety of non-pharmacological interventions for autistic children and young people. These interventions are normally a collection of therapies that are applied to support an autistic person's development and participation in the community. Indeed, the Cooperative Research Centre for Living with Autism (Autism CRC) states that evidence-based early intervention 'is considered important, providing significant opportunities to support early development and reduce longer-term disability'.
11.4
Some intervention practices are designed to target one aspect of child development or family wellbeing, whereas others may target multiple areas at once. As such, intervention practices can be delivered on their own, or in combination, depending on the support needs and preferences of individuals. Figure 11.1 summarises many of the categories of intervention that have been designed for autistic children.
11.5
The Autism CRC has noted that a wide range of early intervention approaches are currently offered by providers, and they are often divided into the following broad categories:
naturalistic developmental behavioural interventions;
sensory-based interventions; and
technology-based interventions.
Evidence-based therapies
11.6
The need for early intervention approaches to be supported by sound evidence was emphasised by many stakeholders. For example, the Autism CRC argued:
Given the importance of early intervention, with its impact upon neurodevelopmental pathways, it is critical that the efficacy; optimal characteristics of the individual child and the mode of delivery; and safety of intervention approaches are supported by the highest level of clinical evidence. We do not accept less for pharmacological therapeutics or other therapies used in clinical practice for other conditions – and should not in the case of autism.
11.7
Indeed, Early Start Australia (ESA) noted that there were several 'non-evidence-based and occasionally potentially harmful therapy approaches that are routinely promoted within Australia (e.g., diet restrictions, complementary and alternative medicine, restrictive practices including punishment)'. ESA argued:
…there is currently little oversight or restriction regarding less evidence-based or potentially harmful practices within Australia for children with [Autism Spectrum Disorder] and some clinicians and complementary medicine practitioners continue to promote and use these practices. As a result, parents may not realise they are accessing a less effective treatment approach for their child and miss the opportunity for the key early intervention period.
11.8
The importance of building the evidence base for early intervention therapies was acknowledged by the National Disability Insurance Agency (NDIA), which engaged the Autism CRC to undertake an independent review of the best available evidence about early intervention approaches for autistic children.
11.9
The Autism CRC's report, Interventions for children on the autism spectrum: A synthesis of research evidence (Autism Interventions Evidence Report) provided a comprehensive evaluation of the current evidence about non-pharmacological interventions for autistic children aged up to 12 years.
11.10
The Autism Interventions Evidence Report found, among other things, that:
no single 'one size fits all' approach to intervention works for all autistic children;
there was no one intervention that improves all developmental outcomes for all children;
there was no consistent evidence to suggest that more intervention necessarily leads to better outcomes; and
it was important for families to be part of the support autistic children receive.
11.11
The NDIA subsequently released its Consultation Paper: Interventions for children on the autism spectrum. This consultation paper called for input and feedback from participants, their families, and caregivers, as well as providers and the disability sector to assist in developing clearer advice on National Disability Insurance Scheme (NDIS) funding of early intervention services for autistic children. In response, the NDIA received more than 450 submissions and is currently 'considering the feedback and continues to engage with the sector to deliver better outcomes for [autistic children] and their families'.
11.12
Work is also underway on the development of a national guideline for supporting the development and participation of autistic children and their families (Supporting Children National Guideline). The guideline will build on the findings of the Autism Interventions Evidence Report and be developed according to the National Health and Medical Research Council's (NHMRC's) recommended process. It will also include a community consultation process, which will begin in early 2022.
11.13
However, several stakeholders have argued that more research and funding is needed to develop the existing evidence base. For example, CliniKids highlighted the large gaps in research knowledge that still exists in relation to the effectiveness of early interventions:
While our scientific understanding of the efficacy of early interventions has grown over the past two decades, there are still large gaps in our research knowledge. A particularly critical research goal is to obtain an understanding of which intervention is most effective for which individual, and at which period of their life? Currently, these clinical decisions are often made on a 'trial and error' basis, which creates the potential for patient harm, and wastage of limited financial resources.
11.14
Similarly, the Northern Territory Office of the Public Guardian argued:
It is widely accepted that with appropriate and adequate early intervention and supports the health, educational and employment outcomes for people with autism are significantly increased. This warrants increased funding for research to ensure the best practice diagnosis, intervention and support for people with autism across Australia.
Importance of early intervention
11.15
It was widely acknowledged by stakeholders that early intervention for autistic children was a crucial factor in producing the best long-term outcomes, particularly in relation to individuals with less complex needs who may gain employment with the right supports. For example, the Royal Australasian College of Physicians (RACP) noted:
Research shows that early intervention is particularly important for children with [Autism Spectrum Disorder] as it may lead to improvements in language abilities and overall more positive outcomes in development. It is important that those children who do not have official diagnosis are able to access NDIS.
11.16
Likewise, the Queensland Family and Child Commission (QFCC) stressed the importance of diagnosis at the earliest opportunity, advising that the 'age at which intervention begins has been associated with improved outcomes, with younger children showing greater gains from intensive early intervention'.
11.17
The challenges to obtaining a consistent, timely and best practice diagnosis is discussed in Chapter 10 of this report.
Pre-emptive intervention
11.18
CliniKids, which is based at the Telethon Kids Institute in Perth, emphasised that while 'autism interventions traditionally commence at the point of diagnosis (typically older than two years of age), there is reason to believe that commencing intervention prior to this period may be particularly effective in reducing long-term disability'. Indeed, CliniKids argued:
The infancy period (<18 months of age) is a particularly sensitive time for brain development, providing an optimal period for a child to benefit from therapeutic intervention. We recently tested a developmental intervention for infants (aged 12 months of age) showing early behavioural signs of autism. We found that, while the intervention did not reduce autistic symptoms, the children receiving the intervention had better parent-reported communication and social skills compared to a control group when assessed 6 months later. This is a very promising area of research that may lead to significant improvements to the way that we provide early intervention for young children.
11.19
The research by the Telethon Kids Institute, recently published in JAMA Pediatrics, found that intervention commencing at the very earliest point in infancy (so called pre-emptive intervention) had significant long-term improvements on development, and reduced the likelihood that children meet criteria for autism in later childhood.
11.20
The findings from this research have been used to inform the implementation of pre-emptive family focused interventions within the National Health Service (NHS) in England.
Early Childhood Approach (formerly the Early Childhood Early Intervention pathway)
11.21
In 2016, the NDIA implemented a nationally consistent approach to supporting children with disability known as the Early Childhood Early Intervention (ECEI) pathway. The ECEI pathway supports children aged 0–6 years who have a developmental delay or disability and provides families and carers with access to individualised early childhood intervention support for their child.
11.22
Under the NDIS, eligible children can access ECEI supports using existing referral pathways, including maternal child health services, paediatricians, and general practitioners. Parents and carers with children aged 0–6 years can also self-refer to their local ECEI provider or through the NDIS directly.
11.23
The Autism CRC has argued that the core principle of the ECEI pathway is the:
Provision of swift, appropriate early intervention following the earliest clinical indications of developmental delay, whether or not a diagnosis has yet been attained, promotes longer-term, positive functional outcomes for individuals on the autism spectrum.
11.24
The Autism CRC went on to explain that:
Delayed receipt of intervention does not capitalise on the highly 'plastic' [i.e. neuroplasticity] elements of neurodevelopment within the early years of life. There is now a wealth of scientific evidence for a range of 'behavioural markers' identifiable during the first two years of life that indicate a significant likelihood that an infant might subsequently be diagnosed as being on the autism spectrum. Providing intervention to these young children once the 'behavioural markers' have been identified is highly likely to deliver better outcomes in reducing long-term disability compared to waiting until diagnostic behaviours emerge in later years.
11.25
Several stakeholders raised concerns around the suitability of the ECEI pathway for autistic children. For example, the Australian Autism Alliance (the Autism Alliance) asserted that the ECEI pathway was 'not a good fit' for autistic children:
There is significant concern that participation in ECEI can delay access to diagnosis. Further, the light touch and short-term approach used in ECEI can postpone autistic children accessing the intensity of supports that evidence shows makes a real difference to their trajectory. Providing autistic children with access to an individually funded plan at the earliest opportunity will provide the best return on investment for the NDIS.
11.26
Regarding the operation of the ECEI pathway, the Autism CRC commented:
It is generally recognised that the initial implementation of the ECEI arrangements has not adequately delivered the desired benefits of early childhood intervention, including family capacity building. The Tune Review [2019 Review of the National Disability Insurance Scheme Act 2013] of the NDIS legislation found that more flexibility is needed in the pathway to maximise the benefits of early intervention in supports for children with disability.
11.27
Similarly, La Trobe University's Olga Tennison Autism Research Centre (OTARC) indicated that the ECEI pathway was not providing the best outcomes for autistic children:
With regards to the ECEI pathway, the delays to access and the level of service provided is insufficient to meet the needs of young autistic children. Our current understanding on the importance of early and intensive behavioural supports for autistic children to impact developmental progress means that the ECEI pathway will be less effective. While this cannot be properly ascertained without data collection on children's outcomes, from the reports received to date, utility is low.
11.28
Some stakeholders argued that parents are not aware that they can access NDIS funding for their children who are undergoing ECEI programs, and this funding is often inadequate. For example, Autism Awareness Australia noted:
Problems with the [ECEI] program has resulted in many families not understanding that they can receive some funding and support from the NDIS whilst they are waiting on the formal diagnosis.
11.29
AEIOU Foundation (AEIOU) submitted that there was a lack of appreciation of autism and the potential of early treatment and perhaps an impetus to cut costs and delay access. As a result, it argued that families need to resort to persistent advocacy to ensure access to intensive supports. AEIOU recommended that all ECEI planners be required to have better training on the autism spectrum, the reintroduction of autism advisers to assist families, and action to streamline the pathway to minimise delayed access.
11.30
AEIOU highlighted the paucity of information and support provided through the ECEI approach and the NDIS more generally:
It is apparent the rules, operational guidelines and legislation have been created with adult participants in mind, with ECEI failing to properly consider the needs of children and families. Parents with very young autistic children simply do not have the knowledge and understanding of both the needs of the child and the kinds of support likely to gain positive outcomes. Subsequent review processes are poorly equipped to be able to react to the changing needs of the child in a timely manner. As a result, it is virtually impossible for a parent to get an appropriate support plan for an autistic child within that critical early intervention window without delay or need for review.
11.31
As a result, AEIOU recommended that NDIS phase out the ECEI pathway and introduce a simpler, fairer system for scheme participants.
11.32
Some stakeholders also drew attention to the need to understand the individual impact of each case of autism, rather than rely on broad levels defined in the American Psychiatric Association's fifth edition of the Diagnostic and Statistical Manual (DSM-5). For example, Autism Spectrum Australia argued that the DSM-5, typically used by diagnosticians, leads to variable standards. It argued:
The timely and accurate diagnosis of autism is important, as it allows individuals to access appropriate early intervention services. Children who receive early interventions demonstrate improved cognitive, developmental, and adaptive functioning, enhanced language and social skills, as well as a decrease in symptom severity, cognitive impairment, and maladaptive behaviours as compared to children who are treated later.
11.33
The NDIA has undertaken a review of the ECEI pathway to identify what is working well and the problem points, gaps and issues in the implementation of this approach. The review involved extensive consultation with stakeholders with the aim to:
Create a distinct ECEI implementation model, differentiated from the general Scheme, which enables the right young children to receive the right level and mix of support for the right period of time (including more pre-access assistance and transition support) through a family centred approach aligned with best practice.
11.34
The initial project consultation report set out 23 recommendations designed to reset the ECEI pathway approach. These recommendations comprised of overarching recommendations and enablers as well as recommendations along the three main stages of the ECEI approach—early support (including access to the NDIS), planning and implementation, transition.
11.35
Through extensive consultations, stakeholders were generally supportive of the new approach and the proposed recommendations to implement it.
11.36
Following further consultation with stakeholders and the decision not to proceed with independent assessments, the NDIA released a progress update of the proposed implementation timeline for the recommendations in October 2021 (see Appendix 3.E).
Post-diagnosis support
11.37
The importance of post-diagnosis support was highlighted by stakeholders as crucial to the success of early intervention. For example, QFCC argued that '[a]ccessing timely post-diagnostic support is important for autistic children, as they need a range of supports and these can alter over time'. QFCC noted
…autism is often linked with other physical, developmental, or mental health conditions such as intellectual disability, epilepsy, gastro-intestinal issues, attention deficit hyperactivity disorder, dyspraxia, anxiety, or depression. These co-occurring conditions can further complicate an autism diagnosis, including exacerbating features of autism. It can be challenging to provide supports and holistic therapeutic interventions to meet all the needs of an autistic child where comorbidities exist.
11.38
The QFCC also pointed out that '[p]ost-diagnosis support is a difficult journey to navigate, and parents can feel they do not have enough information on the different options for therapeutic interventions, with the expectation that it is up to families to contact therapists to determine appropriate courses of action'.
11.39
Indeed, feedback provided to SDN Children's Services from families of children with an autism diagnosis highlighted the lack of follow-up support:
Once my eldest was diagnosed we were not directed to any services, other than the paediatrician, to assist us with what the diagnosis meant and what services we can access. 2 years down the track I am still learning about what services are available to my son and our family.
11.40
Another family noted that there 'is no hand holding after an autism diagnosis, nor are there government-funded support groups available. I rely heavily on other parents. Not enough autism services/professionals'.
11.41
RCAP also highlighted evidence that showed First Nations families 'often receive little or confusing advice about post-diagnostic support, and experience long waiting lists for early intervention, high cost and limited availability of therapies, particularly in regional and remote Australia'. RCAP noted:
The experiences of racism in mainstream services can make people extremely wary of seeking help from such services. Poverty and marginalisation can also impede access to services: even for free services, difficulties getting to such services can be a disincentive and insufficient or confusing post-diagnostic advice and support.
11.42
The Royal Australian and New Zealand College of Psychiatrists observed that '[s]evere behavioural problems in children that prohibit school placement are a significant concern, not only for parents but for our entire mental health system'. It noted that:
Early intervention for these children and their families is inconsistent. The lack of centre-based, disability-focused school holiday programs for these children is being increasingly recognised as problematic in terms of family/carer burnout.
Barriers to effective early intervention
11.43
Stakeholders identified several barriers to effective early intervention. These included delays in diagnosis and the lack of availability of clinicians with appropriate expertise, as well as access to appropriate services and supports. Together, these barriers often lead to inconsistencies in experiences and outcomes for many autistic children and young people.
11.44
The committee notes that these were common barriers experienced by autistic individuals and their families, as outlined in other chapters of this report.
11.45
Stakeholders have reported significant delays in obtaining an autism diagnosis. In turn this often undermines opportunities for many children to benefit from appropriate early intervention. For example, a group from Monash University noted:
Wait times for most Australian autism assessment clinics have increased by six months due to COVID-19, extending waiting times to over one year. These waits occur at a critical time in a child's development where interventions may have their most significant impact. Importantly, parents are already aware of the specific problems their child is experiencing and the types of supports they require, yet such periods are wasted because planning for services and interventions are put on hold.
11.46
Similarly, Spectrum Labor noted that waiting lists for early intervention services can see 'many autistic children miss out on early intervention during the most important formative years and are not as school ready or do not get adequate support at school'.
11.47
Irabina Autism Services advocated for the funding of specialist diagnostic clinics to address the growing demand for diagnostic assessments and facilitate access to early intervention.
11.48
Even with an appropriate diagnosis of autism, stakeholders argued that many children and young people often had difficulty accessing early intervention services. For example, Mindful informed the committee of problems of 'inequity of access to services, with significantly longer waiting lists in areas of lower socio-economic disadvantage and in rural areas'.
11.49
The availability of clinicians and staff with appropriate expertise was identified by stakeholders as a potential barrier for autistic children and young people to access early intervention and other support services. For example, ESA argued that while 'there is training available to clinicians for specific intervention strategies (for example, many ESA therapists have some additional certification or training, such as Hanen, ESDM [Early Start Denver Model] or ABA [Applied Behaviour Analysis)':
…it is not currently a requirement that therapists providing NDIS services to individuals with autism have any training beyond their foundational qualification e.g. Occupational Therapist or Psychologist. This means that there is currently little accountability for service providers, and autism service quality is largely unregulated. Participants often have little understanding of the difference between interventions or their possible harms and risks. Considering the complexity of the condition and the likelihood of vastly differing outcomes and need for tailoring of service delivery, we support the inclusion of additional training expectations for health professionals/clinicians providing therapy.
11.50
The Autism Behavioural Intervention Association (ABIA) highlighted the 'significant shortage of qualified and experienced professionals able to deliver the services that are needed across the life-span of an individual with autism'. As evidence of this, ABIA pointed to the number of [their] providers sourcing staff internationally' as well as the 'long wait-lists with ABA Service Providers'. ABIA also noted:
Behaviour Therapists are highly sought after in the wider disability sector (not just families choosing ABA services). This is because of the evidence base and rigour inherent in EPB [Evidence-Based Practices]. Its' also because behaviour analytics is a scientific methodology and an accredited discipline. This demand for therapists has resulted in the current situation where families wanting ABA services for their child are now competing with general disability service providers who are sending ABA trained people out as carers.
11.51
AEIOU drew the committee's attention to the increased costs for the health system and community services due to delays in access to early intervention:
Children already experience significant delays to access a diagnosis and granting access to life-changing intervention is time sensitive – this will ensure children have the best opportunity to overcome the disabling aspects of autism within the appropriate windows of early intervention. By delaying access, the futures of these children are compromised, and financial and emotional wellbeing of families is compromised.
11.52
The Australian National Audit Office (ANAO) performance audit of early intervention services for children with disability in 2015–16 found:
Access to, and the utilisation of services, has remained reliant on the proximity to [Department of Social Services] registered service providers, with claims and expenditure for eligible children living in regional and remote areas being disproportionately low when compared to claims by children living in urban areas. This is despite additional funding being made available to children in these areas to assist with the cost of accessing services.
11.53
Indeed, international evidence suggests that access to early intervention is correlated to affluence. For example, among a United States paediatric population with autism, neighbourhood affluence was linked to greater access to early intensive behavioural intervention. Indeed, the University of New South Wales Department of Developmental Disability Neuropsychiatry called for specific strategies and additional supports to be provided to ensure health care access for autistic people living in poverty.
Committee view
11.54
The committee recognises the importance of early supports to the life outcomes of autistic children and young people, as well as the need for better information about, and support for, evidence-based early intervention. Specifically, the committee notes that current information and evidence on best practice in pre-emptive and early intervention should be more widely available to the autism community and service providers, as well as to government agencies, including the National Disability Insurance Agency (NDIA).
11.55
The committee is particularly mindful that autistic children have characteristics which manifest in highly individual ways, that diagnosis is complex, and that there is no 'one size fits all' approach. Indeed, the committee recognises the need to continue to build on the existing research into evidence-based early intervention. Therefore, the committee recommends that the Australian Government commit further funding to quality research addressing gaps in the evidence for early intervention approaches.
11.56
The committee is also concerned by evidence from stakeholders that there continue to be barriers to effective early intervention, which often contribute to delays in children and young people receiving appropriate assessments and access to support services. The committee heard from several stakeholders that these barriers particularly affected populations with existing disadvantages, such as those imposed by gender, poverty, remoteness, or culturally and linguistically diverse backgrounds.
11.57
As such, the committee believes that there needs to be clearer identification and coordination of post-diagnostic service supports and interventions to help families with autistic children to better navigate all available options. In particular, the committee recognises the need to help families to navigate the pathway from diagnosis into therapy. To this end, the committee recommends that the government investigate options to improve post-diagnosis support, including a one-stop shop for directing individuals to the most appropriate support services.
11.58
In addition, the committee is cognisant that there needs to be improved education and training for those providing early intervention services, particularly among National Disability Insurance Scheme (NDIS) planners and educators. The committee recommends that all NDIS planners and educators associated with the new Early Childhood Approach be required to undergo training in understanding autism and best evidence-based approaches to early intervention.
11.59
The committee is also encouraged by the work currently underway to create a national practice guideline (Supporting Children National Guideline) for supporting the development and participation of children on the autism spectrum. The committee looks forward to the Supporting Children National Guideline assisting planners and educators to more effectively deliver early intervention services based on the specific needs and circumstances of individuals and their families.
11.60
The committee recommends that the Australian Government commit funding to quality research to continue addressing gaps in the evidence for early intervention approaches.
11.61
The committee recommends that the Australian Government investigate options to improve post-diagnosis support, including a one-stop shop for directing individuals to the most appropriate support services.
11.62
The one-stop shop should be accessible via a range of platforms, including more traditional mediums such as print and phone support services.
11.63
The committee recommends that all National Disability Insurance Scheme planners and educators associated with the new Early Childhood Approach undergo training in understanding autism and best evidence-based approaches to intervention.