Inquiry into support for autistic children and young people in schools
Department of Health Western Australia
Background
Publicly funded diagnostic services
Within the publicly funded WA Health system, the Child and Adolescent Health Service (CAHS) operates a dedicated Child Development Service (CDS) across the Perth metropolitan area that provides multidisciplinary child development support for families. This includes provision of neurodevelopmental diagnostic services, including autism spectrum disorder (ASD) assessments. ASD assessments are often completed entirely within CAHS CDS, although a smaller proportion occur in collaboration with the Department of Communities Neurodevelopmental Disability Assessment Service (NDAS).
WA Country Health Service (WACHS) provides multidisciplinary child development services in country WA and recognises the importance of these services to the WA community. WACHS utilises a wide range of service delivery methodologies including direct services at local clinics, consultative services, virtual care, community and school visits, and community capacity building. Communities located away from the larger regional centers may rely on professionals providing sessional services (e.g. a clinician visiting 3-4 times a year). In the area of neurodevelopmental assessments, WACHS CDS collaborates with the Department of Communities NDAS, who provide a state-wide diagnostic assessment service for developmental disabilities, including ASD. The WACHS paediatrician completes an assessment of the child and determines if there is adequate clinical evidence to indicate that further assessment for ASD is warranted. The WACHS paediatrician also reviews the assessment information provided by the allied health clinicians from the Department of Communities and collaborates with those clinicians to provide a diagnostic outcome as a consensus team.
A strong public child development service is essential for tackling health inequities and improving the lives of children more vulnerable to developmental and health concerns. CAHS CDS, WACHS CDS and the Department of Communities NDAS are the main providers of publicly funded ASD assessments and provide high quality diagnostic assessments for children in WA. Accurate diagnosis of neurodevelopmental disorders is essential in helping families to understand and support their child’s developmental needs, inform choice of support and intervention strategies, and in ensuring access to the National Disability Insurance Scheme (NDIS) and individualised education support funding.
ASD assessments
ASD assessments are informed by national Australian guidelines1. They are often complex and time-intensive and are carried out by a multidisciplinary team of clinicians with specialist training. The make-up of the multidisciplinary team required will vary, depending on the specific needs of the child and family. A paediatrician, clinical psychologist and speech pathologist may be involved in the assessing team, with social work also supporting the assessment process in some instances. The diagnostic process to determine whether a child meets criteria for ASD includes direct assessment of the child, a diagnostic parent interview, and standardised assessment tools. The Diagnostic and Statistical Manual of Mental Disorder, 5th Edition (DSM-5) criteria are addressed to determine if criteria for the diagnosis is met. Information is required from more than one professional and from multiple contexts, such as home, school, day care, and the clinic setting.
Given the potential provision of a lifelong diagnosis based on clinical assessment, and often multiple, complex comorbidities, it is important to maintain ASD assessments at a high calibre.
Demand for ASD diagnostic assessments
The demand for ASD diagnostic assessments within CAHS CDS has grown markedly, with an 82% increase between 2017/18FY and 2021/22FY and a further 89% growth in the last financial year alone.
| Financial year | Referrals for ASD assessment (CAHS CDS) |
|---|---|
| 2017/18 | 302 |
| 2018/19 | 331 |
| 2019/20 | 405 |
| 2020/21 | 494 |
| 2021/22 | 550 |
| 2022/23 | 1043 |
In the 2022/23FY, 58% of children referred for an ASD assessment in CAHS CDS were under 5 years of age and 75% were under the age 7 of years at referral.
1 Whitehouse, A.J.O., Evans, K., Eapen, V., & Wray, J. (2018). A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research Centre for Living with Autism, Brisbane.
Response to Inquiry Terms of Reference
1. Prevalence of autism in WA and projected demand for support in schools
- What factors are affecting the prevalence of autism in WA?
- Is autism more prevalent across certain demographics than others?
Increased ASD prevalence is not unique to WA, but rather is a phenomenon that has occurred internationally over recent years2. In the 1990s, prevalence of ASD was approximately 1 in every 2,000 children and current estimated international prevalence rates are from 1 in 100.
Factors contributing to increased ASD prevalence are multifactorial. One likely contributing factor is increased recognition and awareness of ASD, combined with increased rates of diagnosis-seeking in autistic individuals with lower support needs3. A Swedish study found levels of autism symptomatology to be constant over a period of ten years, while numbers of registered autism diagnoses increased during that time4. There is increased awareness and acceptance of ASD in the community and parents may be more informed and willing to report ASD features. This may also reflect a change in interpretation of the autism diagnostic criteria.
Research demonstrating the effectiveness of autism specific intervention strategies may also have played a role in families seeking a ‘complete’ diagnosis for children with other diagnosed disabilities. For example, historically some children with intellectual disability and autism may have accessed services and educational supports based on their diagnosis of intellectual disability (e.g. been placed in education support schools or classrooms) and not been diagnosed or assessed for autism.
Additionally, there may be a motivation within the community to pursue an ASD diagnosis to enable children to access more supports. A diagnosis of ASD assists in allowing access to various supports and services for children and families including within educational systems and from the NDIS (for children aged 7 years and older). Various other types of neurodevelopmental diagnoses that children may present with do not attract support within such systems. For instance, a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD) or mental health concerns does not meet eligibility criteria for NDIS; a diagnosis of Developmental Language Disorder would not attract additional funded support for a child in a mainstream school setting. These are frequent comorbid and differential diagnostic considerations for children accessing an autism assessment.
It should be recognised that diagnosis does not always correlate with the support required for a child in school, and that a functional assessment may more accurately
reflect their support needs. A functional assessment assesses a child’s strengths and difficulties and identifies areas of development that may require support.
There are differences in prevalence of autism by gender. Males are diagnosed with autism more frequently than females, with current estimates suggesting a ratio of approximately 4:15. There is an increasing awareness of the need to consider possible under-diagnosis having occurred in girls. However, even taking this into account it may be that males are more likely to have autism. There is also a higher instance of a range of gender diverse presentations in the autism community6.
Autism often co-occurs with other developmental and/or mental health conditions. When making a diagnosis of autism under the DSM-5, the diagnosis will be specified as either with or without an intellectual impairment (i.e. global developmental delay for younger children or intellectual disability for older children). Another specifier given as part of the diagnosis is whether the autism is occurring with or without a language delay. The fact that these are specifiers for the diagnosis is reflective of the frequency with which these comorbid diagnoses occur.
Children with multiple risk factors, or with other diagnosed disorders such as ADHD, may undergo a period of therapy / medication prior to an ASD assessment. This may provide valuable information about whether features of ASD remain present over time or with therapy. This may mean that children with ASD features, with complex developmental profile or with other vulnerabilities, may not yet have a formal diagnosis of ASD or be diagnosed later. However, their behaviour in the classroom will often require support before the diagnosis of ASD.
One study has shown that a smaller than expected proportion of children of Aboriginal and Torres Strait Islander (ATSI) origin were diagnosed with ASD before age 7 years, suggesting that children of ATSI origin with a less severe clinical presentation may not currently be identified early7. There is evidence to suggest that parents of children from culturally and linguistically diverse populations may raise concerns about their children’s development at a later age than parents of European ancestry and that the nature of their concerns may also differ8. It could be concluded that these children may be less likely to receive a diagnosis of ASD or to receive a diagnosis at an older age.
- How will an increase in the prevalence of autism affect the availability of support for autistic students in schools?
The increased prevalence of ASD diagnosis will make additional children eligible for support in schools in the current system.
It is important that children who have additional learning, mental health and behaviour support needs continue to access high quality supports to enable them to access the curriculum at school and to participate in their community. Every child should have the opportunity to access appropriate supports and environmental adjustments to meet their learning and wellbeing needs. These supports should be appropriately funded, as evidence shows investment in children and early intervention has positive developmental, social and economic outcomes.
Support for autistic students should include specialised supports at key transition times, such as transition to high school, when children with ASD are particularly vulnerable. Autistic children may also exhibit challenging behaviours that can present risks to themselves or others and appropriate supports will be required to manage such behaviours. Quality teacher training for supporting students with ASD is important as teachers will more frequently have a child with diagnosed or suspected ASD in their classroom.
Where appropriate supports in the school environment are not provided, school attendance, mental health and learning and health outcomes are likely to be impacted as a result. School refusal may become an issue, further limiting socialisation opportunities for this vulnerable population.
2. Current support available for autistic students in WA schools, including consideration of how:
(a) evidence-based practices are implemented across the school system; and
(b) school supports are coordinated with other service areas to respond to the needs of autistic students and their families.
- What are the challenges and successes for implementing evidence-based practices across the school system?
Access to education supports is currently diagnostically based and children may have support needs long before diagnosis. A child’s journey to an ASD assessment will vary depending on their presentation, family, social and cultural factors. For instance, some children may initially be referred to CDS due to concerns regarding hearing, language, attention and/or behaviour and, as many children have comorbid conditions, the initial focus in supporting a child may be on assessment and management of other neurodevelopmental conditions (e.g. ADHD). Sometimes with additional demands within formal schooling, or as social demands become more complex in upper primary school, features of ASD may become more pervasive, prompting consideration of ASD at a later stage in life. Other families may decline an ASD assessment for their child.
The requirement to have specified diagnoses to access supports at school places pressure upon CDS and other service providers to assess children who may not otherwise be considered appropriate for such assessments. Examples include school staff suggesting parents contact CDS to request an ASD assessment despite the parents not sharing the same concerns, or parents seeking re-assessment if a diagnosis is not received. These requests often arise in the context of a child presenting with significant behavioural and learning challenges at school and the school seeking additional funding to best support their students.
With all the above in mind, it may be beneficial to shift from a diagnostically based model of school supports to a functional or needs based framework that focuses on an individual child’s strengths, challenges, and needs, and that varies the level of support provided over time as a child’s needs change.
Difficulty with transition is a feature of ASD and key times of transition within the education system warrant additional supports for children with ASD. This may include commencing school, transition to Year 1, upper primary years, and transition to high school. In upper primary and high school the increases in demands on children mean that challenges for autistic children may be more pronounced, so it is important that school-based support is available across the school years. Adolescence is a vital time for development and what happens during this ‘window of vulnerability’ when biological and psychosocial changes are occurring, has the potential to have a long-term effect on health outcomes9.
It is important to ensure that severity ratings assigned during the diagnostic process are not utilised to determine the supports that a child will be eligible for. A diagnosis of ASD using the criteria in the DSM-5 involves determination of severity ratings for two different areas, the first being social communication and the second being restricted and repetitive behaviours. The severity ratings that are given as part of the diagnosis range from Level 1 (Requiring support) to Level 3 (Requiring very substantial support). Their purpose is to “describe succinctly the current symptomatology”5. The DSM-5 clearly states that severity ratings will fluctuate over time and in different settings, therefore “should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets”. This is clearly stated on all CAHS CDS autism diagnostic reports. As discussed in this submission, consideration could be given to a framework for educational supports that allocates funding and supports based on functional need, which can vary over time, settings and based on individual need, rather than diagnosis or diagnostic severity ratings.
Variations across the education sector (such as between public and private schools) can cause confusion for families and professionals and may contribute to requests for reassessment of ASD. As an example, access to educational supports are available
through the Department of Education for children awaiting an ASD diagnostic assessment, however there appears to be other educational settings where no support is available for children awaiting assessment. This issue is compounded by long waiting times for assessment. Consistency in access to education supports across the sector is strongly preferred.
Challenges in access to services in country WA should also be considered. Families in regional areas generally have reduced access to early intervention and support services. This disadvantage is evident with less access to health professionals, increased distances to travel to services and an exclusive reliance on visiting professionals (in-reach models) in more remote locations. Sessional services can lead to workforce shortages and impact on a clinician’s capacity to gain adequate knowledge about the family they are working with. The barriers to accessing services increase as communities become more geographically remote.
- What is the interaction between school supports and other service areas that autistic students are accessing?
There are currently many positive interactions between schools and health providers. For instance, teachers may refer children to CDS; there is often liaison between schools and CDS; aspects of an ASD assessment may be conducted in the school setting and teacher-completed questionnaires inform ASD assessments; both CAHS and WACHS provide school health services through Community Health Nurses that provide school entry health assessments, can provide advice and support in the development of student health care plans to support a child’s health needs at school, or provide brief interventions to support a child’s physical, emotional and psychosocial health in collaboration with parents/caregivers, other health professionals and education specialists.
There is also positive collaboration between agencies at a leadership level. For instance, following the release of the national ASD assessment guideline1 in 2018, a series of cross-agency meetings occurred between the Department of Education, Department of Communities NDAS, WACHS and CAHS CDS around a collaborative response to how government agencies could work together to support children with autism in WA. Collaborative meetings are targeted and held on an as needs basis, with a series of meetings recently held to review aspects of the eligibility criteria for funded education supports.