ND Australia is an unprecedented, national alliance between community groups, researchers, major hospitals, universities, clinicians, and providers. These groups and experts, leaders in their fields, came together in 2019 to chart a way forward to transform the way people are diagnosed, treated and supported for a range of neurodevelopment conditions, including autism.
ND Australia is working to enable the delivery of integrated treatments and supports (informed by robust evidence-based research) across Australia. Treatments and supports that can change and evolve with people and their families throughout their lives. Where information sharing between researchers, health providers and the community is the norm not the exception. Where the goal is to ensure that every person has the ability to obtain effective treatment regardless of culture, cost or location. Our work is guided by three principles:
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Ground-breaking Research & Programs. Enable and support cutting edge research by fostering partnerships and collaboration to provide life-long strategies and choices for those living with neurodevelopment conditions.
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Community Promote a two-way exchange of information and ideas by exploring and developing pathways for those with lived-experience to drive and inform policy, research and community programs.
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Independent Source of Truth Provide decision and policy makers with accessible, relevant and evidence-based information to inform their deliberations.
The social, emotional, and economic strain for people (including families and carers) living with neurodevelopmental conditions is almost impossible to quantify. For most, this means life-long costs that touch every part of our daily lives including health, education, justice, employment, relationships and wellbeing.
We estimate the combined annual cost of neurodevelopment conditions and related other comorbidities such as anxiety and depression to be around $50 billion dollars per year. The costs of ASD specifically, is estimated at $7.1 billion per annum, with an additional $34,000 per annum for families with an affected child 1 .
We would like to draw the Committee’s attention to the following areas in line with the stated terms of reference:
1 Horlin C, et al. 2014; The cost of autism spectrum disorders. PLoS One. 9(9):e106552.
National Autism Strategy
Autism (ASD) affects 1 in 70 people in Australia although some estimates now place the prevalence of ASD at 1 in every 59 individuals 2 . Autism is classified as being a neurodevelopmental condition. Critically,
up to 95% of people with one condition, will also be dealing with other secondary conditions, very few 3
people have just one condition . As a guide, the estimated breakdown of autism comorbidities are as follows:
- 30% of children with Cerebral Palsy also have ASD
- 60-70% of people with autism also present with DSM recognised ADHD
- Up to 40% of people with Down Syndrome also have ASD.
- About 40-60% of children with ASD also have anxiety.
- 30-40%, of children with ASD have an intellectual disability or developmental delays.
- 20-30% of people with ASD also have epilepsy
- About 4-5% of children with ASD have Tourette syndrome and another 9-12% have tics of some kind.
ND Australia fully supports building a National Strategy for Autism; a strategy that considers best practice diagnosis, gold standard treatments and lifelong support services that are both relevant and cost-effective.
However, the strategy must also consider the high percentage of comorbidities that present in people with ASD. A holistic approach is needed that recognises all the conditions and challenges people face (along with their families and carers) to avoid costly duplication of services, potential misdiagnosis and to ensure better outcomes for those with ASD.
We would welcome the opportunity to contribute to a National Autism Strategy and recommend that an independent taskforce is established, with appropriate funding for a secretariat, that is chaired by a leader with lived-experience and a proven ability to deliver outcomes. This taskforce would draw its membership from the community, leading researchers and clinicians and be responsible for delivering a draft Strategy for comment and consultation by the end of 2021.
Any Autism Strategy must also align with the development of the National Disability Strategy and the work being done by the Federal Government’s National Children’s Mental Health and Wellbeing Strategy.
2 Bent CA, et al. 2015; Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010–2012. Med J Australia. 202(6):317-203 McVey AJ, Schiltz HK, Haendel AD, et al. Social difficulties in youth with autism with and without anxiety and ADHD symptoms. Autism Res. 2018;11(12):1679-1689
Mental Health & Wellbeing
It’s estimated that over 50% of young people with neurodevelopment conditions report severe depression and anxiety. 4 ,5 People with ASD are four times more likely to experience anxiety and depression than their neurodevelopmental peers 6 .
Families have told us that they have been excluded from mental health services, including Headspace, because of the presence of autism or another diagnosed neurodevelopmental condition. At the same time, professionals often report having a lack of knowledge and training about how to identify and respond to those presenting with neurodevelopment conditions.
The mental health interventions for those with autism (and other conditions) are largely unmet by current policies and services.
Accordingly, after representations made by ND Australia, we were pleased that neurodevelopment conditions are being included in the National Children’s Mental Health and Wellbeing Strategy. Five members of the ND Australia Advisory Committee are part of this important piece of work including Strategy Co-Chair Prof. Christel Middeldorp.
We recommend funding relevant pathways for mental health services, as well as appropriate education and training for professionals, so these vulnerable people are not turned away and are able to access the help they need.
A national consortium of researchers (led by the University of Sydney), service providers (Headspace) and community groups have been preparing potential protocols for a trial that could inform these pathways and this document can be made available to the Committee.
We recommend that funding be made available to greenlight trials that will not only rapidly deliver relief for people with autism and other conditions seeking mental health interventions but also inform work around a National Strategy and the Child Mental Health and Wellbeing Strategy.
4 Park SH, Song YJC, Demetriou EA, et al. Disability, functioning, and quality of life among treatment-seeking young autistic adults and its relation to depression, anxiety, and stress. Autism. 2019:1362361318823925.5 Kirby AV, Bakian AV, Zhang Y, Bilder DA, Keeshin BR, Coon H. A 20-year study of suicide death in a statewide autism population. Autism Res. 2019.6 Hudson C, et al. 2019; Prevalance of Depressive Disorders in Individuals with Autism Spectrum Disorder: A Meta-Analysis. Journal of Abnormal Pscychol 47, 165-175
Fast tracking Clinical Trials
To date, for paediatric and pharmacological clinical trials, there has only been around 45 adequately designed trials in this country. Just a handful of these had control groups of over 50 people 7,8 . Despite considerable resources spent, findings rarely provided outcomes that were translated into community practice and provide real answers for families about effectiveness.
Australia urgently needs a platform that can deliver scaled clinical trials at a pace that lifts the evidence base of effective therapies and gives the community real answers about what works and why.
A clinical trials pipeline, with supported infrastructure, has the potential to deliver trials at scale, in a speedy manner that cuts across diagnostic boundaries in a way that has not yet been achieved anywhere in the world.
A clinical trials pipeline of this scope would enable trials of at least 300 children or families per year, using personalized approaches and delivery with the scale and sensitivity to be able to answer complex questions about which treatments should be delivered, for whom, and at what stage of development. This will deliver better, cost-effective health outcomes.
ND Australia is a full member of the Australian Clinical Trials Alliance (ACTA) and through our nationwide network, we are committed to transforming the scale, capacity, and landscape of clinical evidence-based treatments across neurodevelopmental conditions.
We recommend formalising a commitment to enhancing the clinical trial capability nationally and investing in infrastructure that can support, coordinate and properly track the clinical trials being conducted. This would also quickly identify gaps in research that needs to be prioritised based on need.
World-First Transdiagnostic Evaluation
There are numerous baseline testing mechanisms for autism assessment and diagnosis, but NONE of them properly measures the presence of comorbidities which up to 95% of people with one condition will have.
This project, led by the University of Sydney and the Sydney Children’s Hospital Network, is laying the groundwork for a world-first transdiagnostic neurodevelopment needs evaluation for those presenting to hospitals and interlinked services.
This includes their past experiences, and their current and future interactions. Such an evaluation could easily be included as an add-on data set for a National Registry to inform service delivery, research and policy planning.
7 Reddihough DS, Marraffa C, Mouti A, et al. Effect of Fluoxetine on Obsessive-Compulsive Behaviors in Children and Adolescents With Autism Spectrum Disorders: A Randomized Clinical Trial. JAMA. 2019;322(16):1561-1569. doi:10.1001/jama.2019.146858 Yatawara CJ, Einfeld SL, Hickie IB, Davenport TA, Guastella AJ. The effect of oxytocin nasal spray on social interaction deficits observed in young children with autism: a randomized clinical crossover trial. Mol Psychiatry. 2016;21(9):1225-1231. doi:10.1038/mp.2015.162
Leveraging our network of clinicians and researchers and through our links into the community, ND Australia has been able to contribute to the shaping of the diagnostic data set. We can do this in a cost-effective manner by tapping into projects and trials already underway.
The system wide evaluation involving qualitative and quantitative information gathering will consider the following:
- Child development needs
- Child emotional wellbeing, social and behavioural function
- Family health needs including parental wellbeing.
- Hospital-based service needs We are closely monitoring developments from the now paused NDIS trial for functional assessments and how these assessments can be incorporated into this work to avoid costly and time-consuming duplication. This process (which could also be integrated into a National Registry - see below) will allow us to then map identified needs onto existing supports and activate or develop the necessary tools that families can be linked to.
We recommend this project, particularly given its scope and reach, be part of a suite of initiatives that form part of a National Autism Strategy and funded accordingly.
Integrated and Innovative Treatments and Pathways
One of the biggest complaints from families about their experiences seeking information and help for autism and other neurodevelopment conditions is that no one is listening, and they can’t find quality information about what help is available.
Many parents walk away from the diagnostic process confused and without a referral to services or any indication of what the next steps are. Most have to make do with a ‘pot luck’ approach to interventions that are not evidence-based and more often than not result in poor outcomes for individuals and disappointment and frustration for families.
In autism, as with other neurodevelopment conditions, there’s no solid information about which interventions or treatments are the most appropriate for the age and level of ability of the individual or what the most effective pathways might be as a child progresses through life.
Promising results around evidence-based interventions have been found in studies in infants 9 and integrated models of care in the community 10 . This latter study found that fostering partnerships and the willingness of participants to adapt and be flexible were key factors in bridging the gaps between clinical and community service models. In addition, an innovative trial in the US, that established Early Autism Evaluation hubs in local health districts, also emphasised the critical importance of collaboration and
9 Whitehouse AJO et al. Pre-emptive intervention versus treatment as usual for infants showing early behavioural risk signs of autism spectrum disorder: a single-blind, randomised controlled trial. The Lancet Child & Adolescent Health. 2019;3(9):605-1510 Edwards K, et al “Improving Access to Early Childhood Developmental Surveillance for Children form Culturally and Linguistically Diverse (CALD) Background. International Journal of Integrated Care, 2020: 20(2): 3, 1-7
partnerships. It is worth noting that of the over 2000 children assessed in this study, 89% presented with ‘one or more developmental, behavioural, or medical concern warranting follow-up or intervention’ 11 .
We recommend investment in a framework that provides better coordination and collaboration between the researchers in this space in line with our previous recommendation for a clinical trials platform. We also advocate research funding that targets projects dedicated to understanding and identifying the most effective, integrated and evidence-based interventions. In time such infrastructure could also better map services and programs that are available and work in concert with a robust referral system pre and post diagnosis.
NDIS
The initiatives the NDIS has provided for autism and other neurodevelopment conditions thus far, are commendable but they have not been executed particularly well nor has the program delivered services properly to those who most need the assistance. Among the reasons for this has been a lack of thought around deliverables and ease of access for individuals and families. There are also issues identified in the Tune Review (Dec 2019) including that the NDIA ‘is not mature’, there are significant ICT limitations, and the NDIA workforce needs upskilling to be ‘understanding and responsive to the needs of people with disability’.12
Given the importance of early intervention for those with autism, despite the warnings from researchers, clinicians and the community, 13 ,14 the Early Childhood Early Intervention (ECEI) program has NOT worked as intended. The correction made last year, after an intervention from the Minister, gave families access to up to $10K in funding BEFORE a diagnosis, but the problematic lack of capacity, appropriate training for those in the ECEI stream and the lack of an endorsed national guidelines or quality framwork remains.
We note the promised review of the ECEI by the Nous Group has begun and we look forward to making a contribution. We hope that the findings will not just rehash the many recommendations made through at least two separate inquiries by the NDIS Joint Standing Committee, that reviewed Planning and ECEI since
- We trust it will take into account the survey and raft of submissions and recommendations made to the Tune Review last year. All have valuable insights that the NDIA already has access to and could action.
We also look forward to the release of the Living with Autism research being led by Prof Andrew Whitehouse, despite the discontinuation of the Independent Assessment Pilot earlier this year.
11 McNally Keehn r, et al. A Statewide Tiered System for Screening and Diagnosis of Autism Spectrum Disorder. Peadiatrics. 2020;146(2): e20193876 12 Review of the National Disability Insurance Scheme Act 2013, David Tune, December 2019 13 Submission to the Joint Standing Committee on the National Disability Insurance Scheme NDIS Planning (2019); Amaze
14 Submission to the Joint Standing Committee on the National Disability Insurance Scheme NDIS Planning
National Guidelines
The failure to implement national diagnostic guidelines for autism has definitely been a barrier to consistent and best practice diagnosis of autism. The wide variability in the quality of diagnostic processes will continue while the use of the 2018 Autism Diagnostic Guidelines remains haphazard. Until appropriate funding to support education for clinicians is made available and adjustments to the MBS schedule to accommodate the diagnostic procedures contained in the Guidelines are made, the status quo will remain.
A National Register
We recommend the creation of a National Register for Autism to better understand the prevalence of autism in Australia as we don’t have an accurate measure. Even the 2018 ABS snapshot of Autism in Australia was based on an estimation and it acknowledged there were errors in the sampling and that some of the estimates needed to be used with caution.
We recommend the creation of a Register that uses the Western Australian model as its foundation and includes the diagnosis, IQ, symptom profile, functional ability of an individual but the database should also register comorbidities that are present.
With an eye to the problems experienced in the Cancer registry (cervical/bowel), the termination of the multimillion-dollar Pluto child support project and a host of other digital transformation projects that are underway, we also recommend that this activity is independent of Government.
To ensure there is confidence in the register we also recommend that this project is overseen by a team that includes members of the community, clinicians and researchers.
We would welcome contributing to an initiative that established a National Autism Register.
In closing, we thank the Committee for establishing this inquiry and for the opportunity to contribute to this important work. Key members of ND Australia including Prof. Adam Guastella (NSW), Prof Christel Middeldorp (QLD), Prof. David Coghill (VIC), and Director, Nicole Rogerson would be delighted to make themselves available in person to further the deliberations of the Committee.
Philippa Quinn Nicole Rogerson
Director Director
ND Australia ND Australia
ND Australia Advisory Committee
Macquarie Group Foundation Children’s Hospital
Prof Nadia Badawi
Professor, Chair of Cerebral Westmead, University of
OAM
Palsy Sydney
Director of Research at the Turner
Prof Mark Bellgrove Monash University
Institute
Isaac Bromley Director, Infrastructure Advisory EY (Consultant)
Psychiatrist, Financial Markets University of Melbourne
Prof David Coghill Foundation Chair of Developmental and Royal Children’s
Health Hospital Melbourne
Sydney Children’s Hospital
A/Prof Michelle Paediatric Neurologist, Network (Randwick) and
Farrar
UNSW Sydney
Children’s Hospital at
Clinical Psychologist and Michael
Westmead Clinical School
Prof Adam Guastella Crouch Chair in Child and Youth
and The University of
Mental Health
Sydney
University of Queensland
A/Prof Honey Paediatrician and Children’s Health Heussler