NDIA Accountability Project

Submission 30 — Telethon Kids Institute — Inquiry into support for autistic children and young people in schools

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WS

10 July 2023

Hon C.J. Tallentire MLA

Chair, Education and Health Standing Committee Parliament House, 4 Harvest Terrace

WEST PERTH WA 6005

By email: laehsc@parliment.wa.goc.au

Dear Chair Tallentire

TELETHON

KIDS

INSTITUTE

Northern Entrance

Perth Children’s Hospital 15 Hospital Avenue Nedlands WA 6009

PO Box 855,

West Perth WA 6872 ABN 86 009 278 755 T 16186319 1000

E | info@telethonkids.org.au W | telethonkids.org.au

Proudly supported by the people of Western Australia through Channel 7’s Telethon

I am pleased to provide the attached submission to the inquiry into support for autistic children and young people in schools.

The Institute welcomes the Committee’s inquiry and would be pleased to provide any additional support or assistance if considered helpful to do so.

Should you require any clarification or further information to assist the Committee, please contact Fiona Roche, Head of Government Relations, at the Institute on redacted or redacted.

Yours sincerely

redacted

Professor Catherine Elliot Acting Executive Director

SUBMISSION TO THE EDUCATION AND HEALTH STANDING COMMITTEE

INQUIRY INTO SUPPORT FOR AUTISTIC CHILDREN AND YOUNG PEOPLE IN SCHOOLS.

TELETHON KIDS INSTITUTE

13 JULY 2023

About Telethon Kids Institute

The Institute was founded 32 years ago by Professor Fiona Stanley. Under the leadership of the current Executive Director, Professor Jonathan Carapetis, the Institute is WA’s largest medical research institute with a dedicated and diverse team of more than 1300 staff and students.

With its head office in Perth Western Australia, and offices in Joondalup, Cockburn, the State’s North-West and in South Australia, the Institute prides itself on the translation of research into impact to improve lives and wellbeing of children and young people in WA, Australia and around the world.

The Institute’s commitment to Aboriginal children and families has seen the integration of their needs into all aspects of our research, and our release last year of Guidelines for Standards for the Conduct of Aboriginal Health Research. As an Institute, we cannot ignore, nor accept, the disparity in outcomes for Aboriginal kids compared to other Australians.

We have a strong focus on early childhood development and wellbeing and providing support to autistic children and their families. The Telethon Kids Institute is home to the CliniKids Autism Research Team, led by Professor Andrew Whitehouse. This world leading team works on the forefront of research innovation and policy advocacy, informing best practice in the diagnosis and support of autistic children and their families, illustrated by the following:

  • National Guideline - diagnosis Prof Andrew Whitehouse led the Autism CRC’s development of the first National Guideline for the Assessment and Diagnosis of Autism in Australia [1] (‘Diagnostic Guideline’). Previously, diagnostic practices for autism were inconsistent across Australia, leading to confusion in clinical support, inequity in access to services, and difficulties in developing cohesive national policy. In 2018, Professor Whitehouse was appointed the chair of a group of national research leaders convened by the Autism CRC to create the first autism Diagnosis of Autism in Australia. He led the comprehensive research program that generated recommendations for the optimal clinical process for the diagnosis of autism. In 2021, the Federal Government invested in a program to implement these recommendations across Australia. The Diagnostic Guideline has also been used by the UK and Canada to remodel their own diagnostic practices. These Guidelines can be freely accessed via the Autism CRC website.
  • National Guideline – therapies and supports CliniKids researchers, Professor Whitehouse and Associate Professor David Trembath, were appointed by the Autism CRC to lead the development of a second guideline, defining the optimal process for supporting autistic children in Australia [2] (‘Therapies and Supports Guideline’). Families and clinicians are faced with a choice of dozens of different therapies for autistic children, and it can be difficult to know which are founded in evidence and most likely to be effective. A profound clinical and policy challenge has been understanding which supports are most appropriate for any given child – leading to confusion in clinical decision making, wastage in public funding, and significant loss of human potential for autistic children and their families. The Australian Guideline for Supporting the Learning, Participation and Wellbeing for Autistic Children was released in early 2023, and represents a landmark for the autism field, providing clinicians, practitioners, and

policymakers with clear guidance on how to deliver safe and effective therapies to autistic children. These Guidelines can be freely accessed via the Autism CRC website.

  • Inklings ‘pre-emptive’ therapy Inklings is an early support program for babies aged 6-18 months at increased likelihood of disability associated with autism spectrum disorder. In a study published in JAMA Pediatrics, an international research team led by Telethon Kids Institute in collaboration with La Trobe University and the Child and Adolescent Health Service, found the world’s first evidence that a pre-emptive therapy in infancy could lead to such a significant improvement in children’s social development that they then fell below the threshold for a clinical autism diagnosis [3]. The Federal Government is investing in implementation of the Inklings program in multiple States /territories in Australia. In WA, the National Disability Insurance Agency is partnering with the Telethon Kids Institute and WA Health agencies (Child and Adolescent Health Service; and WA Country Health Service) to implement Inklings across the state, with commencement in the final quarter of 2023.
  • Trialling a range of other therapies and medications that have greatly improved the evidence base in the area.
  • Identifying the impact of a range of factors (e.g., early anaesthetic exposure, vitamin D insufficiency, prenatal hormone factors) on the development of neurodevelopmental disorders. This research has helped provide public health advice around early pregnancy and early childhood.
  • Identifying a range of new genetic factors associated with neurodevelopmental disorders.

This submission draws on research evidence as well as the clinical experience of clinicians within the CliniKids Autism Research Team, including Speech Pathologists, Occupational Therapists and Psychologists who are actively involved in the supporting autistic children in WA schools.

Support For Autistic Children and Young People in Schools

This submission is structured around the three items within the Terms of Reference, with a focus on: What we know: What does the research, clinical expertise, as well as the lived experience of autistic children and their families in the WA school system tell us?

Recommendations: What could be recommended to improve the wellbeing and learning of autistic students in WA schools.

The Institute makes the following key recommendation that the Government of Western Australia support the development of an Autism Education Strategy (Strategy) for WA, which adheres to the following framework:

  • The Strategy should focus on improving the learning and wellbeing outcomes for autistic students in WA schools by building inclusive school communities that welcome and value autistic students and their families.
  • The WA Government should provide appropriate funding for schools to implement the Strategy.
  • The WA Government should collect data that monitors performance against the Strategy and embeds accountability structures at the school and department level to ensure that the Strategy is implemented and maintained in a faithful, meaningful and effective way.
  • The Strategy should include a commitment to undertake further research to build an evidence base for new approaches to managing autism in schools, and a strong focus on the evaluation of any policy and practices changes implemented at the school level to ensure children with autism and their families are properly supported.
  • The Strategy should be updated on a periodic basis to ensure that it incorporates new knowledge and evidence about autism and schooling.
  1. The prevalence of autism in WA and projected demand for support in schools.

What we know:

What factors are affecting the prevalence of autism in WA?

Prevalence Consistent with global trends [4], the prevalence of autism diagnosis is increasing in Australia. This is driven by multiple factors which are not unique to Australia, including expansion of the diagnostic boundaries of autism, and greater awareness of autism among clinicians and parents. For a more fulsome explanation of the factors underlying the rise in autism diagnoses over time, please refer to this article by Professor Andrew Whitehouse [5].

There is no study in the last 10 years that has estimated the prevalence of autism in Western Australia. In the United States, the prevalence of autism is estimated to be around 1 in 36 children (2.78%) [6]; in the United Kingdom, the prevalence is estimated to be 1 in 57 children (1.76%) [7]. The most recent estimates from an Australian study (in 2020) -the Longitudinal Study of Australian Children, which included children from Western Australia – indicated that the prevalence of autism in Australia sits between these figures, at 1 in 39 children (2.6%) [8].

While not all individuals diagnosed with autism access the National Disability Insurance Scheme (NDIS), currently the majority do, and NDIS data [9] can provide important information about autism in Australia:

  • Autism is currently the largest primary disability category for the NDIS, with one third of people receiving NDIS payments having a primary autism diagnosis.
  • 9% of active NDIS participants with a diagnosis of autism reside in WA (approximately 18,800 people)
  • 68% of active NDIS participants with a diagnosis of autism are ‘school age’ (aged between 7-18 years)
  • 65% of autistic children accessing NDIS support attend schooling in a mainstream class

Diagnostic and Support Access Issues The prevalence of autism diagnosis should not be the primary factor considered when planning for the support needs of children in WA Schools. Currently, access to supports in Australia are often contingent on confirmation of a child’s autism diagnosis. Without a formal diagnosis, or evidence that a diagnosis is in progress, children may not qualify for needed supports. The allocation of supports based on the presence of a qualifying diagnosis increases the demand for autism diagnostic services, resulting in increased rates of both appropriate and inappropriate referrals and diagnoses. High demand has created long wait-times for autism diagnosis, further delaying the timely provision of supports to those who need them. Across Australia (including WA), there are reports of diagnostic wait-times extending as long as 2-years. The National Guideline for the Assessment and Diagnosis of Autism [1] recommends that an individual’s needs, rather than the presence or absence of a diagnostic label, should determine eligibility for needed supports.

Early intervention has been shown to be effective at supporting development and reducing the disability associated with autism. Unmet support needs can result in a cascade of challenges later in development, some that need not have arisen, had the child received supports during earlier developmental periods. Delays in support provision represent a health and educational crisis for children, families and schools, as delayed support can be directly linked to increased support needs later in childhood.

Research evidence shows that children can benefit significantly from early intervention delivered pre-emptively (i.e., prior to receiving a formal autism diagnosis). Individualised assessment of a child’s support needs has been shown to provide a better indication of the most appropriate intervention pathway, than their diagnostic label. The Inklings pre-emptive therapy [3], which was developed by the Telethon Kids

Institute, and is to be implemented across Western Australia (please see earlier description), is a successful example of this.

Schools can contribute to the identification of children who may require an autism diagnosis, but even more importantly, schools should be proactive in the recognition and fulfilment of a child’s individual support needs prior to diagnosis. By recognising support needs and enabling early support access, particularly in kindy and pre-primary, schools could be pivotal in changing the clinical pathway for WA children and mitigate some of the long-term disability associated with autism.

Is autism more prevalent across certain demographics than others? Diagnosis of autism can vary according to demographic factors, such as gender, age, race and socio-economic status.

  • Gender: The prevalence rate for males is about four times the female rate [10].
  • Age: Behaviours linked with later autism diagnosis are observable in the first year of life, and diagnosis for some children is reliable by age 2-years [11]. However, many individuals are diagnosed later in life due to barriers in diagnostic service access [12], or due to the characteristics or functional impacts of autism not becoming clear until the child is no longer developing in line with neurotypical age expectations [13].
  • Race, socio-economic status & location: Race, socio-economic status and location have all been linked with variability in autism prevalence rates, with lower prevalence rates observed in people from socially disadvantaged backgrounds [14]. However, this has largely been linked to barriers to access diagnostic services for some groups, such as cost and availability of services, and likely does not represent a true lower prevalence of autism for these groups. Rather, disparities represent a delay or ‘miss’ in diagnosis.

How will an increase in the prevalence of autism affect the availability of support for autistic students in schools? If prevalence rates continue to rise it will become increasingly likely that most classrooms in WA will have at least one autistic student. A growing population of autistic children necessitates increased availability of supports appropriate for autistic students; every classroom will need to have access to autism specific resources and staff trained to support autistic learners, in order to provide an equitable learning environment for autistic students.

Autistic students may require a range of types and levels of supports. To meet the diagnostic criteria for autism an individual must experience developmental difficulties which result in some degree of impairment in their functioning [15], meaning it is highly likely that all autistic individuals will require at least some supports or accommodations at school. Some autistic students with co-occurring intellectual, language and/or movement difficulties may require a very significant level of support to attend school, and participate in the classroom.

Currently, many autistic students are inadequately supported in schools due to a collection of issues. such as lack of resources, insufficient awareness of best-practice supports, a lack of standards and staff training, as well as a lack of flexibility within the current school system to accommodate the needs of autistic learners. An increase in autism prevalence without systemic change will exacerbate these issues leading to continued educational inequity and poor outcomes for autistic students.

Recommendations

  • Aligned with the National Diagnostic Guideline (1), access to additional support by the Department of Education (particularly in the early years) should be provided based on identified support needs, rather than contingent on formal diagnosis (or steps towards a formal diagnosis) of autism, as reliance on formal diagnosis is an outdated practice and only further increases the health and educational disparity for already disadvantaged groups, due to the barriers faced by these groups in accessing diagnostic services.
  • The Department of Education should explore playing a more proactive role in the identification of autism, particularly within the early (kindergarten and pre-primary) years. Greater collaboration with the Child and Adolescent Health Service and WA Country Health Services to support this endeavour should be a priority.
  • The Department of Education should use trend data from within and outside of Australia to predict and prepare for the current and future needs of autistic children within the WA school system.
  1. Current support available for autistic students in WA schools

What we know:

a) How evidence-based practices are implemented across the school system The vision for WA should be for a truly inclusive schooling system that safely and effectively supports the diverse needs of all autistic children within a mainstream setting. Currently, there is no schooling system in the world that is meeting that vision, including the schooling system within WA.

There are many challenges to achieving this vision, including the following factors:

  • School culture: The vision of a truly inclusive schooling system that safely and effectively supports the diverse needs of all autistic children within a mainstream setting starts with the setting of a culture that nurtures this vision. This involves Department and school leaders being aware of the different needs of autistic students, and creating school environments that maximises their opportunities.

    One example of a cultural shift required, is a deeper understanding of neurodiversity. While autism is still widely recognised as a disability, there has been a societal movement towards recognition of autism as a brain difference that can be linked with strengths and adaptive advantages, as well as challenges and functional impairments. The concept that there is no ‘ideal brain’, and rather, that brain differences should be more accepted, accommodated, and valued is often referred to as the neurodiversity movement. While previous interventions and supports for autistic individuals have focused on reducing autism characteristics or autism ‘severity’ by changing a child’s behaviour, this focus is now outmoded and no longer aligned with the views and preferences of the majority of the autistic and autism communities. Modern, neurodiversity affirming supports have emerged from the social model of disability. These supports focus first on valuing and leveraging the strengths, preferences and characteristics of the individual, as well as recognising and reducing environmental and systemic barriers to participation, before considering supports that seek to change aspects of the individual. Many schools have not kept up with this cultural shift and persisting school norms, values and expectations frequently result in unnecessary barriers for autistic children. For example, autistic learners who benefit from less seated classroom time and regular movement opportunities, may still be required to spend extended time sitting, even when their learning goals could be completed equally well if given the opportunity to stand and move while learning. A cultural shift in WA schools to align with the social model of disability and modern neurodiversity affirming standards could create significant opportunities for greater acceptance and accommodation of autistic individuals, facilitating their fuller inclusion and educational access.

    Making these cultural shifts presents a significant challenge for schools within the demands of the day-today school environment. The Institute believes these culture shifts could be better nurtured and achieved through a Department-wide Autism Education Strategy for WA.

  • Built environment:

    • It is common for autistic children to have differences in how they process and respond to sensory stimuli [16]. Autistic children can be hyper- or hypo-sensitive to sensory input, which can result in distress, as well as a variety of avoidant and/or seeking behaviours. For example,

some autistic children may be hypersensitive to noise and become distressed and cover their ears in response to ‘normal’ classroom noise levels. Schools are rarely built with consideration nor accommodations for the sensory needs of autistic learners, which can result in significant barriers to engagement and participation.

  • Elopement is also a significant issue for autistic children which can put their wellbeing at substantial risk. Up to half of autistic children have a history of elopement [17]. Many Schools across WA do not have sufficient protections in place, such as barriers and staff training, to ensure the safety of autistic children at school.

  • Academic environment: Like all students, the academic environment has significant impacts on the learning of autistic students [18]. This environment incorporates the structure of the curriculum, class size, and the resources available to support students. Many of the practices supported by research evidence are based on delivery of supports 1:1 or in small groups. Insufficient staff time to support and build relationships with autistic students is a significant barrier to the delivery of evidence based practices in the school setting.

  • Educator knowledge and skills: School staff are provided with limited specialised training in how to support autistic children. There have been significant research-based and cultural-based shifts in what is considered best-practice in the support of autistic children and keeping updated on the current best practice is vital to ensure autistic children are receiving suitable support and education practices to support autistic children.

  • Holistic: Children learn best when all of the key people in their life are providing consistent support. This is particularly true for autistic children, where parents possess a wealth of knowledge that can be leveraged to support their schooling. Identifying ways to involve parents and their knowledge within the school environment, while also preserving the autonomy of schools, is currently a challenge to supporting to autistic students.

Underlying these challenges is the lack of an overarching strategy that guides schools on the education of autistic students in WA. Currently, implementation of evidence-based practice across the school system is highly inconsistent. Professionals and parents widely report that the services, practices and strategies used are inconsistent between schools, and even inconsistent between teachers within the same school. The development of a strategy that can guide schools to support autistic students is an important first step towards achieving the broader vision of truly inclusive schooling system for WA.

How school supports are co-ordinated with other service areas to respond to the needs of autistic students and their families.

Autistic students often have a variety of support needs and may by supported by a multidisciplinary allied health and education team, within and outside of the school setting. Supports are most effective when they are well coordinated, and the role of coordinating supports can place a significant burden on parents. The coordination of school supports with other services is currently a significant challenge. Inconsistencies across schools and even between teachers within the same school are common.

The introduction of the NDIS has shifted the sector towards an individual-based funding models, which has increased the challenge in coordinating services. If an NDIS funded service provider arranges a school visit to support an individually funded child, the provider is only funded to support and provide strategies for that individual child. Individual based funding models do not allow for services providers to provide specialist advice across the classroom and limits the ability of service provides to problem solve alongside teachers with the whole classroom and its dynamic in mind. The provider may make individualised support recommendations to the teacher, but those recommendations may not take into account the dynamics of the whole class and the potential conflicts with individualised recommendations made by other service providers for other children in that same classroom.

The NDIS has also placed unprecedented demands on schools to accommodate allied health service providers who are supporting autistic students. It is common for schools to be liaising with more than 10 different service providers, which places significant burden on schools to manage visitors, firstly, within school grounds, and secondly, within individual classrooms. The consequence of this burden has typically been for schools to either employ a dedicated person from within their school budget to liaise with the therapy service providers seeking to work with autistic students, or for schools to prevent access to the school by service providers altogether. While these directives are an understandable reaction to the significant burden placed on schools, they also have consequences to the students and school environment, either through withholding therapy within the naturalistic environment of the school, or by incurring an unexpected cost to the school budget.

Recommendation: The Government of Western Australia support the development of an Autism Education Strategy for WA. Please refer to Page 2 of this submission for further information on this recommendation.

  1. Strategies in other jurisdictions that support school systems to respond to the needs of autistic students, and the applicability of those strategies to WA

What we know:

How do strategies in other parts of Australia support autistic students? To our knowledge, there is no schooling system in the world that has achieved the vision of a truly inclusive schooling system that safely and effectively supports the diverse needs of all autistic children within a mainstream setting. In part, this is due to the challenges of evolving school culture, infrastructure, curricula, pathways, and staff knowledge and skills to the rapidly increasing proportion of autistic students within schools. In the absence of a truly inclusive schooling system, a variety of schooling options are available to autistic students (globally and within Australia) including:

  • Mainstream: Mainstream schools where autistic children access schooling with or without additional resources, accommodations or other supports to assist them in fully accessing and participating in mainstream education at or near the expected year-level for their age.
  • Education Support Centres: Centres located on the grounds of mainstream schools which cater to the additional support needs of a broad range of children and young people, including those with an autism diagnosis. Autistic students may spend some of their time within the centre and some of the time in a mainstream classroom with or without additional supports to facilitate their engagement in a mainstream school setting.
  • Education Support Schools: Specialist schools that are separate to mainstream schools which cater to the additional support needs of a broad range of children and young people, with and without an autism diagnosis.
  • Autism Support Centres: Centres located on the grounds of mainstream schools which have specialist resources and specifically trained staff to support the needs of autistic children and young people. Autism Support Centres offer the opportunity for the specific needs of autistic students to be prioritised within the centre, as opposed to Education Support Centres where the needs of a range of autistic and non-autistic students may be accommodated. Colocation on a mainstream school campus facilities opportunities for autistic students to engage with mainstream peers, with and without additional supports.
  • Autism Specialist Schools: Specialist schools that are separate to mainstream schools which have targeted resources and specially trained staff to support the specific needs of autistic children and young people. Autism Specialist Schools allow the opportunity for autistic students to engage in education that has been specifically aimed at their strengths and needs and where all aspects of the school (including the environment, routines, curriculum and resources) have been planned with a focus on autistic learners, rather than balanced against the strengths needs and preferences of their non-autistic peers.

The strengths and support needs of autistic children vary widely between individuals, and there is ‘one-size-fits-all’ approach which will be effective at supporting all autistic children. In the absence of a flexible and truly inclusive mainstream system, having a variety of schooling options available for children and families increases the likelihood that the diverse schooling needs of autistic children will be met.

Whole-of-government Autism Strategies Several Australian jurisdictions have, or have committed to, developing whole-of-government autism strategies, including the Governments of South Australia and Victoria, and the Commonwealth Government. There is merit in developing a whole-of government strategy for autism, as it can serve to coordinate the functions of Government relevant to autism that often sit across different departments (e.g., Education, Health, Disability, Employment). For example, the Government of South Australia has established the Office of Autism (housed within the Department of Premier and Cabinet) to provide this coordinating function.

One challenge in developing such a whole-of-government strategy is to avoid ‘zero-sum’ policy making, where an increased highlighting and coordination of functions relating to autism, has the potential to decrease the focus and coordination of functions relating to other neurodevelopmental conditions, such as Attention Deficit Hyperactivity Disorder (ADHD), Developmental Language Disorder, Foetal Alcohol Spectrum Disorder (FASD). It is too early to understand whether the whole-of-government strategies developed in other Australians jurisdictions have been able to circumvent this potential risk, while also nurturing better outcomes for autistic people.

Autism Education Strategy Numerous Australian States have developed strategies or policies that have sought to support autistic students within school settings.

The Victorian Government has a specific Autism Education Strategy [19], built around 6 pillars (1) Promote and celebrate autism inclusion and diversity at the whole school level; (2) Build the capability of school leaders and staff to meet the educational needs of autistic students; (3) Involve the student, families and experts in collaboratively planning for students’ education; (4) Support autistic students’ health and wellbeing; (5) Support autistic students’ individual education needs; and (6). Strengthen accountability and transparency for students with disability. To achieve these pillars, the Victorian Government has enacted a number of funded policies. This includes the establishment of the Diverse Learners Hub [20], a centre of excellence that provides evidence-based advice, resources, and guidance on meeting the learning and wellbeing needs and aspirations of diverse learners, including autistic students.

The Queensland Government also houses an Autism Hub within the Department of Education [21]. The Autism Hub provides expert services to support state schools through the provision of specialist advice, autism-specific resources, and professional learning, designed to meet the needs of schools throughout Queensland.

The Government of South Australia has recently announced a number of autism-related policies, including those designed to support the education sector. A prominent policy is the appointment of an “Autism Inclusion Teacher” in every public primary school [22]. The duties of the Autism Inclusion Teachers are to provide support to fellow educators on how to best support and educate autistic students; and drive improved practice relation to autism that works for their school. This policy will sit within a statewide ‘Autism Friendly Charter’, which will provide a framework for enacting further policies to help make South Australian an ‘autism-friendly state’.

These States provide examples of strategies and implementable policy that are highly relevant to the WA context. For this reason, we believe that the creation of a WA Autism Education Strategy is the logical next step for the WA Government in supporting autistic students in WA schools.

Recommendations:

The Government of Western Australia supports the development of an Autism Education Strategy for WA. Please refer to Page 2 of this submission for further information on this recommendation.

Thank you for the opportunity to make a submission to the Education and Health Standing Committee

For further information or clarification, please contact the Institute’s Head of Government Relations on redacted or on redacted.

1310 July 2023

REFERENCES

  1. Whitehouse AJO, Evans K, Eapen V, Wray J. A national guideline for the assessment and diagnosis of autism spectrum disorders in Australia. Australia: Autism CRC, 2018.
  2. Trembath, D., Varcin, K., Waddington, H., Sulek, R., Pillar, S., Allen, G., Annear, K., Eapen, V., Feary, J., Goodall, E., Pilbeam, T., Rose, F., Sadka, N., Silove, N., Whitehouse, A. National guideline for supporting the learning, participation, and wellbeing of autistic children and their families in Australia. Australia: Autism CRC. 2022.
  3. Whitehouse AJO, Varcin KJ, Pillar S, Billingham W, Alvares GA, Barbaro J et al. Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism: A Randomized Clinical Trial of Outcomes to Diagnosis. JAMA Pediatrics. 2021 Nov;175(11):e213298. Epub 2021 Sept 20. doi: 10.1001/jamapediatrics.2021.3298
  4. Chiarotti F, Venerosi A. Epidemiology of Autism Spectrum Disorders: A Review of Worldwide Prevalence Estimates Since 2014. Brain sciences. 2020;10(5):274.
  5. Whitehouse, AJO. Do more children have autism now than before? The Conversation [Internet]. 2011 Dec 5 [cited 2023 Jul 2]. Available from: https://theconversation.com/do-more-children-have-autism-now-than-before-4497
  6. Centers for Disease Control and Prevention. Autism and Developmental Disabilities Monitoring (ADDM) Factsheet [Internet]. 2023 [cited 2023 Jul 2]. Available from: https://www.cdc.gov/ncbddd/autism/addm.html.
  7. Roman-Urrestarazu A, van Kessel R, Allison C, Matthews FE, Brayne C, Baron-Cohen S. Association of Race/Ethnicity and Social Disadvantage With Autism Prevalence in 7 Million School Children in England. JAMA pediatrics. 2021;175(6):e210054–e210054.
  8. May T, Brignell A, Williams K. Autism Spectrum Disorder Prevalence in Children Aged 12–13 Years From the Longitudinal Study of Australian Children. Autism research. 2020;13(5):821–7.
  9. National Disability Insurance Agency. Autism Participant Dashboard [Internet]. Canberra (AU): National Disability Insurance Scheme [updated 2023 Mar 31; cited 2023 Jul 2]. Available from: https://data.ndis.gov.au/reports-and-analyses/participant-dashboards/autism
  10. Zeidan J, Fombonne E, Scorah J, Ibrahim A, Durkin MS, Saxena S, et al. Global prevalence of autism: A systematic review update. Autism research. 2022;15(5):778–90.
  11. Daalen E van, Kemner C, Dietz C, Swinkels SH., Buitelaar J., Engeland HM van. Inter-rater reliability and stability of diagnoses of autism spectrum disorder in children identified through screening at a very young age. European child & adolescent psychiatry. 2009;18(11):663–74.
  12. Elder JH, Brasher S, Alexander B. Identifying the Barriers to Early Diagnosis and Treatment in Underserved Individuals with Autism Spectrum Disorders (ASD) and Their Families: A Qualitative Study. Issues in mental health nursing. 2016;37(6):412–20.
  13. Ozonoff S, Young GS, Brian J, Charman T, Shephard E, Solish A, et al. Diagnosis of Autism Spectrum Disorder After Age 5 in Children Evaluated Longitudinally Since Infancy. Journal of the American Academy of Child and Adolescent Psychiatry. 2018;57(11):849–857.e2.
  14. Daniels AM, Mandell DS. Explaining differences in age at autism spectrum disorder diagnosis: A critical review. Autism : the international journal of research and practice. 2014;18(5):583–97.
  15. Diagnostic and statistical manual of mental disorders : DSM-5. Fifth edition. Arlington, VA: American Psychiatric Association; 2013.
  16. Leekam SR, Nieto C, Libby SJ, Wing L, Gould J. Describing the Sensory Abnormalities of Children and Adults with Autism. Journal of autism and developmental disorders. 2007;37(5):894–910.
  17. Anderson C, Law JK, Daniels A, Rice C, Mandell DS, Hagopian L, et al. Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders. Pediatrics. 2012;130(5):870–7.
  18. McDougal E, Riby DM, Hanley M. Teacher insights into the barriers and facilitators of learning in autism. Research in autism spectrum disorders. 2020;79:101674–.
  19. Victorian Education Department. Victorian Autism Education Strategy [Internet]. State Government of Victoria [updated 2022 May 9, cited 2023 Jul 2]. Available from: https://www.vic.gov.au/autism-education-strategy
  20. Victorian Education Department. Diverse Learners Hub [Internet]. State Government of Victoria [updated 2023 Jun 2, cited 2023 Jul 2]. Available from: https://www.vic.gov.au/diverse-learners-hub
  21. Queensland Education Department. Autism Hub [Internet]. State Government of Queensland [updated 2022 Sep 6, cited 2023 Jul 2]. Available from: https://autismhub.education.qld.gov.au
  22. Department for Education South Australia. Improving support for children and students with autism [Internet]. State Government of South Australia [updated 2023 May 3, cited 2023 Jul 2]. Available from: https://www.education.sa.gov.au/parents-and-families/health-and-disability-support/improving-support-children-and-students-autism.