NDIA Accountability Project

Submission 94 — Monash University — Select Committee on Autism

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17 July 2020

Submission to the Select

Committee on Autism

Prof Katrina Williams, MBBS, MSc, PhD, FRACP, FAFPHM

Dr Amanda Brignell, B AppSci (Speech Path.), MPH, PhD

Dr Georgina Cox, DClin Psych, PhD

Dr Tamara May, BA, BSc, GDipPsych, PGDipPsych, PhD

Dr Alexandra Ure, MPsych, PhD

Ms Charmaine Bernie, OccThy (Hons)

Ms Marijke Mitchell, BN, MN

Contents

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About the authors We are a multidisciplinary group of clinician researchers who specialise in autism. Our group is led by Professor Katrina Williams who is a paediatrician, public health physician and autism researcher. Prof Williams has been working in the field seeing children and their families and reviewing evidence and creating new knowledge since 1998. She completed a PhD about the epidemiology and classification of autism in 2005. Team members include:

Clinicians and Researchers

Dr Amanda Brignell is a paediatric speech pathologist and research fellow within the Department of Paediatrics at Monash University. Amanda has extensive training and clinical experience working across Canada, the United Kingdom and Australia with children who have neurodevelopmental disorders and communication difficulties. Amanda completed her PhD about trajectories and predictors of language development in children with and without autism in 2017. She contributes to all research programs within Monash Autism Research Centre and leads on projects relating to understanding presentations and assessing interventions to improve communication.

Dr Georgina Cox is a senior research fellow within the Department of Paediatrics, Monash University and a psychologist at the Royal Children’s Hospital. She has extensive expertise in conducting Systematic Reviews, as well as original research including the development and implementation of online therapy programs and best practice guidelines for child and adolescent mental health. She completed her PhD in 2008 and her Doctorate in Clinical Psychology in 2018, with her theses focusing on depression and suicide in young people. Georgina’s contributions span all research programs within the Monash Autism Research Centre. She leads the research program to optimise parent mental health, including assessment of the effectiveness of Acceptance and Commitment Therapy (ACT) and implementation of preventive mental health interventions into usual care.

Dr Tamara May is a senior research fellow within the Department of Paediatrics at Monash University and psychologist. Tamara has extensive research and clinical experience working with children, adolescents and adults who have neurodevelopmental disorders. She completed her PhD in 2013 about predictors of academic attainment in primary school aged children with autism. Within Monash Autism Research Centre, Tamara leads our research programs relating to autism prevalence, health care and the role of sex in autism. Tamara is also interested in the overlaps between autism and other conditions such as Attention Deficit Hyperactivity Disorder and complex trauma.

Dr Alexandra Ure is a clinical psychologist and research fellow with the Department of Paediatrics, Monash University. She holds senior clinical roles within Developmental Paediatrics at Monash Children’s Hospital and the Specialist Autism Team at the Royal Children’s Hospital. Alex completed her PhD about neurodevelopmental outcomes associated with preterm birth in 2013. Alex contributes to all research programs within the Monash Autism Research Centre, leading on projects aimed at improving child and family assessment and interventions. Alex has particular interests in child mental health and supporting vulnerable or disadvantaged families.

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Clinicians and PhD students Ms Charmaine Bernie is a senior occupational therapist with experience in the assessment and support of children with neurodevelopmental concerns. She is currently completing her PhD on understanding and supporting families of children on the autism assessment pathway.

Ms Marijke Mitchell, a senior advanced practice paediatric nurse specialising in neurodisability who is completing a PhD on the use of simulation training for acute health care staff working with children with autism.

About this submission Our response pertains to children and their families. We have framed our response to highlight best care for children and their families, supported by key evidence and highlighting innovation, research and training opportunities. Each section has a summary of key points and recommendations, as well as useful references.

We use the following terms throughout:

  • Autism as an abbreviation for autism spectrum disorder
  • Child to include children and youth
  • Parents to refer to parents and carers 5

Meet two children with autism

The famous quote by Dr Stephen Shore “If you have met one person with autism….you have met one person with autism” is commonly used to describe the diversity with which autism presents in different individuals. Throughout this document, we will refer to Ben and Caria, who are compilation scenarios of the types of strengths and difficulties we encounter in our clinical work. We will describe how best-practice interventions and services can support them and their families throughout their childhood. We will focus on building on their strengths and promoting success and a high quality of life for them and their families. We will also highlight how innovative developments to care models could further enhance their lives.

Meet Ben

Ben is a 3-year-old boy, diagnosed with autism and developmental delay. He is able to follow some simple, routine directions but is not able to speak. He communicates by making sounds, using a few gestures and by pointing to pictures on a speech generating device. His favourite activities are lining up sticks, tearing paper and playing with water. He also loves listening to music and when his father sings the ‘happy birthday’ song. Ben moves quickly around the room and it can be difficult to get his attention. He puts a lot of objects in his mouth. He is not yet toilet trained and needs substantial support to perform daily activities. He attends a pre-school with specialist support five days a week.

Meet Caria

Caria was diagnosed with autism at the age of 7. She talked early for her age in both Turkish and English. She has always liked to collect items, and these collections have changed over time. As a pre-schooler she loved a specific movie and its characters. She could talk at length about the movie and was happy playing for hours with the figurines alone in her room. When she started school, she had difficulty making friends, often wanting to play games her way. Caria generally got on with her classroom work without a fuss unless there was a change to the school routine. On several occasions in the last year her parents were contacted to come and collect her due to a high level of anxiety and distress with a change. This impacted on her parents’ wellbeing and ability to deal with the conflicting demands of both work and family life. At home, Caria also liked the same routines and was very specific about using the same brands and exact timing of activities. Caria often had tantrums if her younger sister and her friends were making a lot of noise, which her parents found particularly difficult to deal with.

Understanding differences Given the differences between Ben and Caria it is not surprising that best care for each child will be different. These differences will be amplified if there are differences in their family structure and resources, including whether English is their first language and if they live in a city or remote setting. Throughout this document, we describe key elements of diagnosis and best care for children and their families, providing examples for Ben and Caria depending on possible different life situation and events.

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Understanding prevalence and prognosis of autism in Australia to best address need

Changing prevalence over time

We have been monitoring the prevalence of autism in Australia over decades (May et al., 2020; May et al., 2018; May et al., 2017; May & Williams, 2018; Randall et al., 2016; Williams et al., 2005; Williams et al., 2008). An opportunity to establish a national autism register was missed in 2009. This could be rectified with Australian Institute of Health and Welfare data linkage, making use of multiple existing data sets including those in which an autism diagnosis is recorded, such as via the Medicare Benefits Scheme and the National Disability Insurance Scheme data.

Current estimates indicate cohort differences based on year of birth with increasing prevalence in more recently born cohorts (May et al., 2020). Our most recent Australian population representative data indicated that 4.4% of 12 year old children born in 2004 had autism, compared with 2.6% of children born in 2000 (May et al., 2020) (Figure 1).

Proportion (%) of children with ASD

6 YRS 8 YRS 10 YRS 12 YRS 14 YRS 16 YRS

Age

e=@==Parent Baby ==@=Parent Kinder

Figure 1. Prevalence of parent-reported autism from the Longitudinal Study of Australian Children in the Birth Cohort (Born 2004) and Kinder Cohort (Born 2000)

This suggests that one in 23 children at age 12 have autism in Australia, or at least one in every classroom. Estimates are also likely different based on severity of autism behaviours and associated disorders, including intellectual disability. Increases in prevalence over time have been partly attributed to the diagnosis of a larger proportion of children with normal or superior intelligence and a broadening of diagnostic criteria (Figure 2).

Figure 2. Broadening of autism diagnostic criteria influences prevalence, as shown using a normal distribution of the population to indicate that a diagnosis of autism is at one end of the distribution.

Understanding diagnostic stability and changing needs Our most recent unpublished research suggests that between the ages of 6 to 12 year 14%, and from 10 to 16 years one in four children ‘lost’ their parent-reported autism diagnosis (May et al, under review). This is in keeping with a prior systematic review by a member of our team (Woolfenden et al., 2012) in which of children with Autistic Disorder, between 53 100% met criteria at follow-up and of children with another form of autism (known previously as Pervasive Disorder not otherwise specified) 14-100% maintained the same diagnosis at follow-up. In this review, if baseline ages were younger, diagnostic stability was lower. This review is currently being updated (Brignell et al., 2017, Cochrane protocol). Factors that contribute to ‘losing’ a diagnosis need to be explored in detail, including whether treatment has been effective or whether children have been unnecessarily diagnosed with autism.

More changes occur for each child’s and family’s needs than changes in diagnostic classification. For example, it is well known that ability to communicate changes over time and children have different communication needs at different ages (Brignell et al., 2016; Brignell et al., 2017; Brignell et al., 2018a; Brignell et al., 2018b; Brignell et al., 2018c).

Knowing the number of individuals with autism in the community, and their age, underpins all service planning from identification of concerns to ongoing intervention and support. Diagnostic classification changes and frequent changes in needs mean that each child and their family will have changes to the interventions and supports they require. As such, services that can identify and respond to these changing needs are crucial.

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Key points

e The prevalence of autism is increasing in Australia.

e Some children will lose their autism diagnosis over time.

e Flexible and responsive services are needed to meet the changing needs of individuals with autism.

e With advances in statistical modelling, high quality linked data for Australia is available, many pressing questions could be answered without additional funding and the imposition of research time. This approach is cost effective and minimises the burden of research for already busy families.

e Existing data sources could provide much of the information that is needed.

Recommendations

e Develop a high-quality national data set for autism and related conditions via a collaboration between autism experts and the Australian Institute of Health and Welfare.

e Use the above data set to:

© assist service planning based on needs and yet unmet need;

© provide ongoing data on prevalence, support use and response to treatment,

  1. identify high priority topics or regions for support.

References

Brignell A, Prior M, Donath S, Reilly S, Bavin EL, Eadie P, Williams K, Morgan A. (2016) Parent reported patterns of loss and gain in communication in 1-2 year old children are not unique to autism spectrum disorder. Autism.

DOI: 10.1177/1362361316644729

Brignell A, Albein-Urios N, Woolfenden S, Hayen A, lorio A, Williams K. (2017) Overall prognosis of preschool autism spectrum disorder diagnoses. Cochrane Database of Systematic Reviews, Issue 8. Art. No.: CD012749.

DOI: 10.1002/14651858.CD012749

Brignell A, Williams K, Reilly S, Prior M, Morgan A. (2018a) Trajectories of language development in children with autism spectrum disorder. Journal of Autism and Developmental Disorders. DOI:10.1007/s10803-018 3565-2.

Brignell A, May T, Morgan A, Williams K. (2018b) Predictors and growth in receptive vocabulary from 4 to 8 years in children with and without autism spectrum disorder: A population-based study. Autism. DOI:

10.1177/1362361318801617

Brignell A, Morgan A, Woolfenden S, Klopper F, May T, Sarkozy V, Williams K. (2018c) A systematic review of language outcomes in autism spectrum disorder. Autism and Developmental Language Impairment.

May T, Brignell A, Williams K. (2020) Autism Spectrum Disorder Prevalence in Children aged 12-13 years from

the Longitudinal Study of Australian Children. Autism Research. 13(5):821-827

May T, Sciberras E, Brignell A, Williams K (2017) Autism spectrum disorder: Updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample. BMJ Open. DOI:10.1136/bmjopen-2016-015549

May, T., Forrester, M., Webber, M., Roberts, J., Spreckley, M., Scheinberg, A., & Williams, K. (2018). Current status, opportunities, challenges and the paediatrician’s role as the National Disability Insurance Scheme rolls out across Australia. Journal of Paediatrics and Child Health, 54(1), 7.

May, T., & Williams, K. (2018). Brief report: gender and age of diagnosis time trends in children with autism using Australian medicare data. Journal of autism and developmental disorders, 48(12), 4056-4062.

Randall M, Sciberras E, Brignell A, Ihsen E, Efron D, Dissanayake C, Williams K. (2015) Autism Spectrum Disorder: Presentation and prevalence in a nationally representative Australian sample. Australian and New Zealand Journal of Psychiatry. DOI: 10.1177/0004867415595287

Woolfenden, S, Sarkozy, V., Ridley, G., & Williams, K. (2012). A systematic review of the diagnostic stability of autism spectrum disorder. Research in Autism Spectrum Disorders, 6, 345-354

Williams K, Helmer M, Mellis C, Tuck M, Glasson E, Bower C, Wray J (2005) Incidence of autism spectrum disorder in two Australian states. Medical Journal of Australia. 182 (3) 108-111

Williams K, MacDermott S, Ridley G, Glasson EJ, Wray J (2008) The prevalence of autism in Australia. Can it be established from existing data? Journal of Paediatrics and Child Health. 48 (9) 504-510

Frameworks and principles underpinning best care Current context Although autism is a lifelong condition with changing needs (see above) services are often delivered for finite periods and working independently of other services a child is accessing. For example, assessment services are currently disconnected from services that deliver care across childhood. Services and supports delivered by therapists may not interact with a child’s education setting supports and professionals. This is not ideal, however also not surprising given there are many elements of best care. These elements including, interventions and support, are provided by services that are separated by funding stream, location and draw on the expertise of busy professionals whose expertise and skills have developed within different systems, with no cross-fertilisation available and little time or funding for intersectoral communication.

Frameworks

Many different frameworks could be used to conceptualise care of children with autism (see Figure 3). For autism, a model that considers each individual in their environment, their experiences and the impact on their life is needed (May et al., 2019).

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Figure 3 Different available frameworks relevant to autism

The International Classification of Functioning, Disability and Health (ICF; World Health

organisation, 2001) provides an opportunity to conceptualise the many different elements contributing to a successful life for a person with autism, and for their family. It shows the important interactions between key elements, like abilities and activities and personal factors and activities, and how all of these interact with diagnosis, but are not determined by that alone. ICF also assists with providing a framework that can unite professionals with different expertise and training. It provides opportunities to think about the right place for interventions and supports, and, assists planning and prioritising child and family goals, and the right interventions and supports at the right time in the right place to achieve them. In the image below the schema used for the ICF is shown (Figure 4).

Figure 4 International Classification of Functioning Disability and Health model (Image credit: World Health Organisation, 2001)

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Looked at another way an individual child, Ben (described in the case above), who has been diagnosed with autism will sit within the different settings as shown in Figure 5 below.

Figure 5 Schematic representation of Ben, within his family, the services he accesses and the community

The importance of adequate funding for supports After Caria was diagnosed with autism, her application for funding via NDIS fell short, so her family needed to coordinate services using Medicare. Her parents do not speak English well and have trouble navigating the system. They try therapy but stop prematurely as they can’t afford to pay the gap between the Medicare rebate and full fee. Caria also does not qualify for funding for an aide in the classroom. Her school try to accommodate her needs but with many children requiring support, she is not considered a priority until her behaviours escalate. Caria begins to abscond and school refuse. Her parents have difficulty managing their job, and Caria’s increasing needs.

Principles

Both the type of care and how it is delivered are important on the path to success for children and their families. Working in partnership with parents and carers is a well established ideal that is seldom realised. Working in partnership falters because care is provided in so many different places, by so many different professionals. Time is also limited, partly by work pressure which is fuelled by funding models, remunerating face-to face contact but not team-based communication, which includes parents/carers and children (Bernie et al., 2019).

Care planning, whether health, early intervention, disability, behaviour or a learning plan, is also well-established best practice. However, care planning for children with autism is

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infrequent and, when developed, care plans are rarely shared with all professionals involved in the child’s care.

Creating a care plan for Ben A speech pathologist, occupational therapist and psychologist are working together as an early intervention team with Ben’s family to plan his goals. Ben’s family prioritise the goal of building his independence. Ben loves music so the family want to offer him the opportunity to participate in a music class. A detailed assessment that profiles Ben’s specific strengths and difficulties, including the underpinning factors that may be contributing to his difficulties e.g. in using oral language, is conducted. Ben is able to use a speech-generating device successfully to express simple words and the device is well supported by his school and family. A supported music class is identified in the community. In order to facilitate his ability to participate in music class, his device will be adapted to include appropriate vocabulary relating to music e.g. ‘go, stop, my turn’ and additional supports such as visual schedule boards will be available to help him transition between music activities.

Clarity about important outcomes is also key to selecting interventions and supports and ensuring they are optimal for the time, needs, place and expectations of each individual. In recent years the ICF and quality of life frameworks have assisted professionals to work with families to identify needs, prioritise goals and understand the relative importance of outcomes. Information is emerging about quality of life of children with autism in Australia (Epstein et al., 2019). Parents and individuals with autism report very different goals than professionals (McConachie et al. 2015 & 2018). Quality of life is not embedded in the ICF framework, and work is underway to understand how key ICF domains are associated with quality of life (Lami, PhD under examination, data available on request).

Two terms have come into frequent use in recent times. The first is personalised care planning, which aims to give people with long-term conditions more control over which treatments and services they receive, addressing their full range of needs and supporting them to self-care (Morton et al., 2009). This should be our goal for all children with autism. It is the most appropriate care when limited evidence is available and there is much individual variation and uncertainty about the future. To enact personalised care an approach that brings together care planning, working in partnership with parents and children and a need and a goal-based approach, linked to key domains of the ICF framework, is needed.

The second is precision medicine. Compared to personalised care, precision medicine is concerned with highly specialized and individualised treatments based on how a specific person responds to a therapy (as described by Bresnick, ND). This is possible when there is evidence of what is effective coupled with an understanding of how to select who to apply the evidence to. Researchers are working towards precision care for individuals with autism, but to date there have been many false starts. We watch with interest as further genetic understandings may assist with specific, likely pharmacological, interventions.

Australia has an excellent health care system, as evidenced by the response to COVID -19. However, the health care system is known to fail those with complex problems requiring

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input from multiple professionals, and when care is best delivered close to home, in a well coordinated and -communicated way. This is true if care is only accessed from health professionals and services. Negative impacts are amplified if care is provided by multiple agencies.

Key points

e The ICF provides a useful framework to understand all the factors about a child, their family and environment to allow an understanding of their strengths and difficulties, and to identify priorities for planning and levers to facilitate success in achieving important outcomes.

e Important outcomes include ability to function, participate in school and the community and to enjoy a good quality of life.

e Working in partnership with families and in well-coordinated care teams, that can work together despite funding and service boundaries, is needed to deliver all the care a child needs.

e To provide personalised care, care planning is needed.

Recommendations

e Adopt the ICF as the key framework for providing interventions and supports for children with autism.

e Develop ‘whole of government’ approaches to deliver interventions and supports, so that seamless integration of services is possible to minimise care coordination for families, overcome existing barriers and create cost savings due to efficiencies

e Train all autism service providers in family-centred care and care plan development.

e Ensure services that receive government support provide data about important outcomes, including function, participation and quality of life.

References

Bernie, C., Sutherland, R., Williams, K., Marty, S., May, T., & Roberts, J. M. (2019). Autism health and education: Professional roles and challenges. The SAGE Handbook of Autism and Education, 340.

Bresnick J. Decoding the Top 10 Buzzwords of Healthcare Big Data Analytics. (Last accessed 13.07.20 https://healthitanalytics.com/news/decoding-the-top-10-buzzwords-of-healthcare-big-data-analytics)

Epstein, A., Whitehouse, A., Williams, K., Murphy, N., Leonard, H., Davis, E., Reddihough, D. & Downs, J. (2019) Parent-observed thematic data on quality of life in children with autism spectrum disorder. Autism: The Intemational Journal of Research and Practice. 23, 1, p. 71-80 10.

World Health Organization. (2001). International classification of functioning, disability and health: ICF. World Health Organization. https://apps.who.int/iris/handle/10665/42407 [Last accessed 15“ July 2020)

May, T., Bernie, C., Marty, S., Sutherland, R., Roberts, J., & Williams, K. J. (2019). Autism, Health and Education: Models and Systems for Working Together. The SAGE Handbook of Autism and Education, 331.

McConachie H, …. Williams K. (2015) Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment, No. 19.41 Southampton (UK): NIHR Journals Library; 2015 Jun. (last accessed 13.07.20 https://www.ncbi.nlm.nih.gov/books/NBK299302/pdf/Bookshelf_ NBK299302. pdf)

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McConachie H Livingstone N, Morris C, Beresford B, Le Couteur A, Gringras P, Garland D, Jones G, Macdonald G, Williams K & Parr J. (2018) Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders volume 48, pages 1041–1051

Morton, T., Morgan, M. (2009) Examining how personalised care planning can help patients with long-term conditions. Nursing Times; 105: 37 (last accessed 13.07.20 https://www.nursingtimes.net/clinical-archive/long term-conditions/examining-how-personalised-care-planning-can-help-patients-with-long-term conditions/5006427.article)

Diagnosis as an aid to best care Since 2008, when the Helping Children with Autism (HCWA) Package was launched, many services shifted from broad developmental assessment services to autism diagnosis services. New autism diagnosis services were also established, charging varying fees. These services often focus on whether a child has autism, that is, making the diagnosis or not. However, as we describe below, this is only a small part of the information services and families need.

Assessment delays Even in a situation that world class diagnostic process is provided the system is failing children and their families if they are kept waiting for that assessment. Children wait at least six months, usually longer, to be formally assessed for social and developmental concerns or diagnosed with autism. 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. Services are available that respond to functional needs and do not require a diagnosis, and this approach is now recommended in the Australian diagnostic guidelines. (Whitehouse et al., 2018) There is an urgent need to maximise early critical developmental periods using simple, short and accessible interventions that target family strengths and empower families waiting for diagnostic confirmation.

We have developed a novel intervention to allow service access during diagnostic wait times. Our pilot and feasibility trial, called “Coaching While Waiting”, explored ways to utilise this waiting time by understanding the acceptability and practicality of an innovative, goal-directed parent intervention ‘Coaching While Waiting (CWW)’ and service direction support; delivered via telehealth or face to face format (Bernie et al, under review). We recruited 16 families of children waiting for a diagnostic assessment. The coaching arms included an evidence-based approach called Occupational Performance Coaching, which has been previously carried out with caregivers of children with neurodevelopmental difficulties.

Findings indicate telehealth was equivalent to face to face format, with both intervention arms resulting in three times more goal obtainment than usual care; with 0% drop-out in the telehealth arm. One parent noted “…knowing that we are being proactive and speaking to someone was a great help, otherwise you feel as if you are in a never-ending queue and

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unsure of the time it’s going to take” and another “I think it’s helpful to start working on issues while waiting for assessment, to make family life better.”

We are now poised to start a randomised controlled trial to assess the efficacy of this intervention, to be delivered via telehealth, during this critical health service period. Funding is now sought to assess the effectiveness of this intervention delivered by telehealth across three key sites in Victoria. Further adaptations of coaching and service navigation support whilst waiting for autism assessment are currently occurring via telehealth at health service sites in Victoria, highlighting the importance of improving the evidence base in this area.

Use of innovative service delivery When Ben was 2.5 years old he was referred to the multidisciplinary assessment team for assessment. His parents were told he would have to wait 12 months for a diagnostic assessment due to the long waiting list. Ben’s parents were fortunate to be invited to a ‘Coaching While Waiting’ program which facilitated their ability to access occupational therapy and speech pathology through NDIS, specialised childcare and other supports while he waited for his diagnostic assessment.

Diagnostic classification

In Australia, Autism Spectrum Disorder is diagnosed using the Diagnostic and Statistical Manual for Mental Disorders- fifth edition (DSM-5; American Psychiatric Association, 2013) criteria. For a diagnosis, individuals must have 1) significant impairments in social communication and 2) restricted and repetitive patterns of behaviour, interests or activities. The degree to which these behaviours occur varies significantly within each criterion. For example, under the social communication domain, a child’s difficulties may range from “an apparent absence of interest in people” to simply “difficulties adjusting behaviour to suit different social contexts”. The DSM-5 also stipulates the problems a child is experiencing need to have been present in early life, cause clinically significant impairment in current functioning, and not be better explained by intellectual disability or global developmental delay. Whether there is a language delay or associated medical, genetic or environmental factors must also be specified (American Psychiatric Association, 2013).

These criteria exist to ensure that when a diagnosis of autism spectrum disorder is applied to an individual, other important alternative diagnoses have been excluded and associated difficulties have been identified. However, because autism can present so differently, providing the diagnosis, even with the specifications required, does not provide the child or their family with all the information they need. The possible strengths and difficulties of a child with autism vary widely. In acknowledgement of the ‘spectrum of autism’, international and Australian guidelines for autism diagnosis recommend clinicians take diagnostic assessments further, and incorporate an assessment of function, outlining strengths and difficulties across a range of abilities and behaviours (The National Institute for Health and Care Excellence [NICE]; 2017, Whitehouse et al., 2018). Despite this guidance, diagnostic practices vary widely in Australia and are not always linked to broader neurodevelopmental and functional profiling. (Randall et al., 2016; Taylor et al., 2016; Taylor et al., 2017). Access to diagnostic services is also inequitable, whereby those unable

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to pay for private assessments face long waits for access to public funded services (Gibbs et al., 2019).

Diagnostic tools Tools have been developed to aid diagnosis. Unfortunately, these tools provide little to inform prognosis or intervention planning and do not perform sufficiently well to be used as the sole basis of diagnosis. Data below is taken from a systematic review of studies exploring diagnostic test accuracy of existing tools (Randall et al., 2018) and shows that even with the best of existing tools there are false positive and false negative diagnoses for children with autism (Figure 6).

Figure 6. Diagnostic accuracy of the Autism Diagnostic Observation Schedule (ADOS). Taken from Randall et al. (2008) Cochrane Database of Systematic Reviews.

Inspection of data from a Victorian assessment service suggests a widely used diagnostic tool, currently considered by many as the ‘gold standard’ assessment tool, has less specificity in children with comorbidities and those who have experienced trauma (Ure, Publication in preparation, data available on request). Professional judgement and clinical experience therefore play a substantial role in forming a clinical diagnosis. Implicit in this diagnostic process is our reliance on a clinician’s subjective understanding of what behaviours are considered ‘acceptable’ compared with those that are clinically significant.

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Comorbidities

In addition to wide ranging autism behaviours, up to 70% of children with autism have comorbidities (Hossain et al., 2020) which are often sustained into adolescence and through to adulthood (Buck et al., 2014). Common mental health comorbidities such as anxiety and/or depression, and neurodevelopmental disorders, such as attention deficit hyperactivity disorder (ADHD), language and intellectual disorders, significantly impact functioning and participation (May et al., 2018). Interventions and support required to effectively support children and their families varies considerably based on the abilities, behaviours, mental health and learning needs of each child.

Dimensional approach to autism

We have proposed an approach to assist clinicians to remember the common facets of strengths and difficulties children with autism experience (Ure et al., 2018). By using this approach families will also be able to understand the different areas that could benefit from intervention and support, rather than themselves working through what a diagnosis of autism means for their child and family.

Using a dimensional assessment approach

The dimensional approach we developed is shown here for Ben and Caria’s strengths and difficulties using stars. Although both children have been diagnosed with autism their strengths and difficulties look different (Figure 7).

Overly confident/Lack of awareness Highly anxious/susceptible Attention deficit * * Can focus for hours

Severe Impairment Average Gifted

Hyposensitive * * Hypersensitive No interests * wy specific interests

No routine required * *,,

Passive Active/Odd

    • Verbose rong need for routine

Aloof

Non-verbal

Figure 7. Dimensional approach to autism with Ben shown as a blue star and Caria as a red star. Adapted from Ure et al., JPCH (2018)

Further to this approach, once the key difficulties and strengths are identified for the dimensions in the Figure above, then their impacts on activities, participation and QoL, as well as the way they interact with the family and other environments can be better described and understood.

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Key points

Families are still waiting many months for an autism assessment in Australia Despite clear guidelines, the autism diagnostic process varies widely in Australia and is not always linked to broader neurodevelopmental and functional profiling which assesses strengths and difficulties.

Current tools for autism assessment do not perform sufficiently well to be used in isolation. Professional judgement and clinical experience therefore play a substantial role in the formation of a clinical diagnosis. Clinical skills are best used in a dimensional approach to identifying strengths and difficulties of children with autism.

It is time to create a shared understanding between professionals and families about the pathways to best care in Australia and to base this on strengths, difficulties and need.

Recommendations

Funding of the Coaching While Waiting randomised control trial to improve outcomes for families waiting for autism assessments in Australia Ensure services assessing children for autism have staff with the expertise required to rule out other diagnostic possibilities (genetic, psychiatric, other neurodevelopmental). Train all staff to assess children using a dimensional approach, using eight dimensions of ability, thinking and behaviour. This approach can be used in conjunction with the ICF framework and assist families and professionals planning for supports and interventions. Configure services to:

© assess strengths, difficulties and needs;

© develop appropriate care plans to assist families in accessing available

services that are right for their child regardless of whether in disability care, health, education or other community services

Assistance for families to coordinate the many different services they require should be readily available. Ensure a child’s progress and services received are suitable and monitored over time, based on the changing needs of the child or family. Diagnostic and assessment processes for autism are reconceptualised as part of broader neurodevelopmental assessment services that function with tiers — see Australian guideline. Rather than being autism-specific, diagnostic services should assess for a broad range of neurodevelopmental issues, as well as comorbid mental health issues. Diagnostic services should have direct links to services which provide evidence based interventions, that monitor changes over time and provide support for families. See Victorian autism enquiry for how services should be configured. Evidence-based, telehealth service access for all families where reasonable and appropriate to do so, in light of Covid-19 restrictions and service equity principles.

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References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Association.

Bernie, C, May, T, Graham, F, & Williams, K (under review). Coaching Whilst Waiting: Feasibility of Occupational Performance Coaching and service navigation support to address child and family goals whilst waiting for ASD assessment: A protocol.

Gibbs V, Aldridge F, Sburlati E, Chandler F, Smith K, Cheng L. (2019) Missed opportunities: An investigation of pathways to autism diagnosis in Australia. Research in Autism Spectrum Disorders. Jan 1;57:55-62.

May, T., Brignell, A., Hawi, Z., Brereton, A., Tonge, B., Bellgrove, M. A., & Rinehart, N. J. (2018). Trends in the overlap of autism spectrum disorder and attention deficit hyperactivity disorder: prevalence, clinical management, language and genetics. Current Developmental Disorders Reports, 5(1), 49-57.

National Institute for Health and Care Excellence (2017) Autism spectrum disorder in under 19s: recognition, referral and diagnosis (Clinical Guideline 128) Updated 20 September 2017. Available at: [accessed 10 July 2020]

Randall, M., Egberts, K.J., Samtani, Al., Scholten, R.J.P.M, Hooft, L., Livingstone, N., Sterling-Levis, K., Woolfenden, S., Williams, K. (2018). Diagnostic tests for autism spectrum disorder (ASD) in preschool children. Cochrane Database of Systematic Reviews. Issue 7. Art. No.: CD009044.

Randall M, Albein‐Urios N, Brignell A, Gulenc A, Hennel S, Coates C, Symeonide Cs, Hiscock H, Marraffa C, Silove N, Bay Vl, Woolfenden S, Williams K. (2016) Diagnosing autism: Australian paediatric research network surveys. Journal of Paediatrics and Child Health. Jan;52(1):11-7. doi: 10.1111/jpc.13029

Taylor L, Eapen V, Maybery M.T, Midford S, Jessica Paynter, Lyndsay Quarmby, Timothy Smith, Katrina

Williams, Andrew JO Whitehouse (2016) Diagnostic evaluation for autism spectrum disorder: a survey of health professionals in Australia. BMJ open. http://dx.doi.org/10.1136/bmjopen-2016-012517

Taylor L, Eapen V, Maybery M, Midford S, Paynter J,Quarmby L, Smith T, Williams K, Whitehouse AJO (2017) Brief report: an exploratory study of the diagnostic reliability for autism spectrum disorder. Journal of Autism and Developmental Disorders. May;47(5):1551-1558 doi: 10.1007/s10803-017-3054-z.

Ure A, Rose V, Bernie C and Williams K. (2018), Autism: One or many spectrums? Journal of Paediatrics and Child Health, 54: 1068-1072. doi:10.1111/jpc.14176

Western Australian Autism Diagnosticians Forum. Autism Spectrum Disorders: Assessment Process in Western

Australia. Western Australian Autism Diagnosticians Forum, Subiaco, Western Australia, 2012. Available from: www.waadf.org.au/WAADF_ASD_Assessment _Process_2012.pdf.

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. Brisbane, QLD: Cooperative Research Centre for Living with Autism.

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Evidence based interventions and support

Use of existing evidence A summary of evidence-based care for autism is beyond the scope of this submission. We direct the reader to existing evidence syntheses on pharmacology, for example selective serotonin reuptake inhibitors (SSRIs) (Williams et al., 2013), complementary and alternative medicine, for example chelation for autism (James et al., 2015), and speech and other therapies, for example communication interventions for autism spectrum disorder in minimally verbal children (Brignell et al., 2018). There are also important evidence gaps.

What the reader will notice from the examples above is the wide range of different interventions that have been proposed as being effective for children with autism, many with little or no supportive evidence. An observation over many years of clinical work is that families given an autism diagnosis are more susceptible to expensive marketed interventions, whether evidence based or not, compared to families of children diagnosed with a specific genetic disorder like Rett syndrome, Fragile X or an intellectual disability without autism. This means that parents need support to navigate best care, unless they are supported to do so by their team of professionals (Williams & Roberts 2018).

Evidence based interventions and supports should be implemented in Australia, adapted to our context. Incorporating best evidence provides many opportunities to improve care and reduce inequity, based on geography or needs. Evidence about medication for autism is not currently followed in Australia, incurring costs for families with little likely benefit and potential risks. Existing data could assist with understanding the magnitude of this problem and new outcome evidence (see recommendations in section 1).

Implementation of evidence to practise is hampered in Australia by disparate views that influence interpretations of existing evidence. Some of this is driven by conflicts of interest, which are sometimes subtle and not always declared. Firmly held views based on training and experience also contribute to disparities in assessment of evidence. Regardless of the driving forces, the result is often an inability to find a point of agreement from which to start, and what follows is inaction.

To our way of thinking, key situations in which evidence is not being used optimally is in developing personalised early intervention programs for preschool children. A report was prepared for the NDIS (Roberts & Williams, 2016) which provides a detailed review of the many different elements of intervention and yet unanswered questions about timing, intensity and specific elements of therapy needed for different autism characteristics. Despite clear recommendations we are aware that interventions that are not personalised or team-based are often used and that interventions that were stated as having no evidence have been provided.

Adaptations with association conditions, such as anxiety and language disorder The heterogeneity and developmental nature of autism challenges our capacity to understand and evaluate outcomes from intervention. It also means that no one specific

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intervention is best for all or will work for any one child throughout their childhood (Stahmer et al., 2011). Rather, interventions and supports differ for children according to their abilities, behaviours and learning needs (The National Institute for Health and Care Excellence [NICE], 2013; Prior et al., 2011). Common comorbidities, including intellectual disability, language difficulties, ADHD, and mental health problems also influence outcomes of interventions (McBride et al., 2020). Co-occurring symptoms likely have an additive and interactive negative impact on an individual’s level of functioning, suggesting interventions which focus on lessening the impact of the comorbidities may, in some cases, reduce the need to focus on specific behaviours associated with autism (Rodgers & Ofield, 2018; Taylor & Gotham 2016; Cohen et al., 2014).

Anxiety

The interplay between symptoms of anxiety and autism is particularly complex. Anxiety is one of the most common mental health difficulties associated with autism (Kerns et al., 2014), with 50% of children and adolescents with autism experiencing debilitating symptoms (Simonoff et al., 2008). Emerging evidence suggests anxiety presents differently in individuals with autism, compared with the general population, with neurobiological differences found in responsivity to stressors (see Rodgers & Ofield, 2018, for a review). Theoretical differences have also been described, with intolerance of uncertainty considered a key mechanism in the development and maintenance of anxiety in individuals with autism (Joyce et al., 2017), with significant implications for therapies targeting these underlying mechanisms. Whilst some progress has been made in the development of a pilot therapy program for children with anxiety and autism in the UK (Rodgers et al., 2017), further validation work is needed. Notably absent from the literature is the development and evaluation of interventions appropriate for children with autism and intellectual disability, many of whom also experience mental health problems including anxiety (Matson et al., 2009).

Support from a Clinical Psychologist to treat comorbid autism and anxiety At the start of grade three, Caria appeared to be managing the new routine in the classroom. Every day after school, however, Caria would burst into tears as soon as she sat in the car. Her family found it difficult to determine what was upsetting Caria. As the year progressed, Caria was less able to hold it together at school. She became increasingly irritable, lashing out at her classmates. When Caria’s teacher commenced maternity leave, Caria become aggressive towards her new teacher and ran away. A clinical psychologist started working with Caria, her family and teacher to understand the drivers of Caria’s emotional difficulties and associated escalating behaviour. Caria and her parents started a new evidenced based program with the psychologist, focussed on developing new strategies to help Caria tolerate uncertainty and change within the school environment. Part of this program involved the teacher developing new ways of working with Caria in the classroom. Caria also learnt her own strategies to self soothe and remain calm and, in time, developed a more flexible approach to managing uncertainty. As her anxiety reduced, Caria became less irritable and, with teacher support, started participating in group activities.

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Language disorder Language difficulties are a second example of co-occurring conditions with a significant additive and interactive impact on functioning and behaviour in children with autism. The majority of children with autism have some degree of language difficulty (Levy et al. 2010), and around 30% are minimally verbal (not able to use words or phrases). The ability to communicate is a critical life skill and there is evidence that expressive language difficulties are associated with emotional and behavioural problems (Fok et al., 2019). There may be a range of reasons why some children are not able to talk including cognitive difficulties, social difficulties and severe speech impairments such as childhood apraxia of speech (Chenausky et al., 2019). It is crucial that interventions are tailored to the child’s specific communication profile, in addition to being based on the parent’s priorities, the child’s characteristics and the evidence base. Over the past 5 years, the evidence for communication interventions for children with autism who are minimally verbal has been building (Brignell et al. 2017). While this is a positive direction, further research is required to identify which interventions are most appropriate for which children, the optimal dose of intervention and why some children do not respond to communication interventions. Furthermore, given the evidence for communication interventions is relatively new, there are limited professional development opportunities for training and a lag in the interventions being consistently implemented by clinicians in the community.

Support from a Speech Pathologist Ben was referred to a speech pathologist when he was 2.5 years old because he was not saying any words. The speech pathologist conducted a thorough assessment of Ben’s skills including areas such as play, comprehension, pre-verbal skills (e.g. gesture, social communication), oral-motor skills and use of sounds. This enabled the speech pathologist to characterise Ben’s communication strengths and difficulties in detail. The speech and pathologist was then able to devise an evidence-based intervention plan that utilised multimodal communication options (such as key word signs and picture symbols) alongside intervention focused on Ben’s oral language. Intervention incorporated Ben’s specific interests, as well as family goals and priorities. The speech pathologist also collaborated with staff at Ben’s childcare to share goals and strategies to maintain consistency across environments.

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Key points

Recommendations

Navigating appropriate evidence-based care for children with autism is not straightforward. A wide range of evidence-based care is available for children with autism, however not all evidence is implemented into care in Australia No one specific intervention is best for all. The best interventions and supports balance a child’s:

  1. individual needs oO strengths

oO. areas of difficulty and;

© comorbidities (e.g. anxiety). Common comorbidities, including anxiety and language difficulties, often interplay with features of autism creating further complexity. NDIS funding is variable and does not adequately service the needs of all children, with many services then financially out of reach for families. Access to services is dependent on availability, with those living in remote or rural areas often left without local services. Access to services has improved for those eligible for NDIS, although gaps remain for those with extreme challenging behaviours

e Ensure funding is available to allow trained health professionals, and care team experts to provide well-coordinated, personalised child and family centred approaches.

e Increase funding for telehealth services to ensure those who live in regional/remote areas, as well as those with mobility or respite demands have adequate access.

e Prioritise the funding of research into evidence-based services, and evidence implementation initiatives.

e Create a clear reporting framework for all care providers, so that outcome data can routinely be collected, and services evaluated.

e Increase funding for behavioural and communication intervention programs.

References

Brignell A, Chenausky KV, Song H, Zhu J, Suo C, Morgan AT. Communication interventions for autism spectrum disorder in minimally verbal children .(2018) Cochrane Database of Systematic Reviews, Issue 11. Art. No.: CD012324. DOI: 10.1002/14651858.CD012324.pub2.

Chenausky K, Brignell A, Morgan A, Tager-Flusberg H (2019) Motor speech impairment predicts expressive language in minimally verbal, but not low verbal, individuals with autism spectrum disorder. Autism and

Developmental Language Impairments. https://doi.org/10.1177/2396941519856333

Cohen, S., Conduit, R., Lockley, S. W., Rajaratnam, S. M., & Cornish, K. M. (2014). The relationship between sleep and behavior in autism spectrum disorder (ASD): a review Journal of Neurodevelopmental Disorders, 6(1), 44. https://doi.org/10.1186/1866-1955-6-44

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Fok, M. & Bal, V. (2019). Differences in profiles of emotional behavioural problems across instruments in verbal versus minimally verbal children with autism spectrum disorder. Autism Research, 12(9), pp.1367-1375.

James S, Stevenson SW, Silove N, Williams K. (2015) Chelation for autism spectrum disorder (ASD). Cochrane Database of Systematic Reviews, Issue 5. Art. No.: CD010766. DOI: 10.1002/14651858.CD010766.pub2.

Joyce C, Honey E, Leekam SR, Barrett SL, Rogers J. (2017). Anxiety, intolerance of uncertainty and restricted and repetitive behaviour: insights directly from young people with ASD. Journal of Autism and Developmental Disorders;47(12):3789–3802. doi: 10.1007/s10803-017-3027-2

Kerns CM, Kendall PC, Berry L, et al. (2014) Traditional and atypical presentations of anxiety in youth with autism spectrum disorder. Journal of Autism and Developmental Disorders;44(11):2851-2861. doi:10.1007/s10803-014-2141-7

Levy S, Giarelli E, Lee LC, Schieve LA, Kirby RS, Cunniff C, Nicholas J, Reaven J, Rice CE (2010) Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. J Dev Behav Pediatr May;31(4):267-75. doi: 10.1097/DBP.0b013e3181d5d03b.

McBride N, Weinzimmer, SA, La Buissonnière-Ariza V, Schneider S,Ehrenreich May J ,Lewin A, McGuire J, Goodman W,Wood J, Storch E (2020). The Impact of Comorbidity on Cognitive-Behavioral Therapy Response in Youth with Anxiety and Autism Spectrum Disorder. Child Psychiatry and Human Development.

National Institute for Health and Care Excellence (2013) Autism spectrum disorder in under 19s: support and management (Clinical Guideline 170) Published Date: 28 August 2013. Available at: https://www.nice.org.uk/guidance/cg170/ [accessed 14 July 2020]

Prior, M., Roberts, J. M.A., Rodger, S., Williams, K. & Sutherland, R. (2011). A review of the research to identify the most effective models of practice in early intervention of children with autism spectrum disorders.

Australian Government Department of Families, Housing, Community Services and Indigenous Affairs,

Australia.

Roberts J & Williams K (2016) Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers [last accessed 16.07.2020 www.ndis.gov.au/media/863/download]

Rodgers, J., & Ofield, A. (2018). Understanding, Recognising and Treating Co-occurring Anxiety in Autism.Current developmental disorders reports,5(1), 58–64. https://doi.org/10.1007/s40474-018-0132-7

Rodgers J, Hodgson A, Shields K, Wright C, Honey E, Freeston M. (2017). Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES©) Programme. Journal of Autism and Developmental Disorders Dec; 47(12):3959 3966.

Simonoff E, Pickles A, Charman T, Chandler S, Loucas T, Baird G.(2008) Psychiatric disorders in children with autism spectrum disorders: prevalence, comorbidity, and associated factors in a population-derived sample.Journal of the American Academy of Child Adolescent Psychiatry;47(8):921-929. doi:10.1097/CHI.0b013e318179964f

Stahmer, AC., Schreibman, L., Cunningham, A.B. (2011). Toward a technology of treatment individualisation for young children with autism spectrum disorders. Brain Res. 1380: 229-39.

Taylor JL, Gotham KO. Cumulative life events, traumatic experiences, and psychiatric symptomatology in transition-aged youth with autism spectrum disorder (2016). J Neurodev Disord; 8(28)doi:10.1186/s11689-016 9160-y

Williams K, Brignell A, Randall M, Silove N, Hazell P. Selective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders (ASD). (2013) Cochrane Database of Systematic Reviews, Issue 8. Art. No.: CD004677. DOI: 10.1002/14651858.CD004677.pub3.

Williams K & Roberts J, 2018 Understanding autism: The essential guide for parents. Exisle Publishing.

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Training the workforce

The ICF makes explicit that the environment for a child is a key contributor to their health and wellbeing. As such, environments that we provide for intervention and support need to maximise opportunities for success. To do this we need excellent and innovative and self improving systems in which care is delivered and professionals are trained to deliver best care. Simulation training is widely used in health care for physiological, but not yet, behavioural management

Following diagnosis, children and families need access to services that support their specific needs, including the provision of specialist health services. Australian data produced by members of our research team indicates that not all services are meeting the needs of children and their family when they present for well-planned health care (Taghizadeh et al., 2015; Taghizadeh et al., 2019). Further, there is a paucity of trained staff in hospital settings to manage children with autism, especially at times of high-risk behaviours.

Well-trained hospital staff Systems are failing children with autism and their families if, when they need hospital care it is not available or accessible because of their child’s behaviour. The behaviours a child has in hospital may be primary, that is present in all settings, or secondary, due to the changes and nature of the hospital setting. Either way hospital-based staff should be trained to prevent behaviours that place the child, family or staff at risk and to ameliorate when they occur. Acute care staff are often not trained in managing the needs of children with autism, and in particular aggression. As such, they lack confidence in preventing and managing externalizing behaviours, including those that place the child, family or staff at risk. A high fidelity simulation training program for hospital staff on managing challenging behavior and a diagnosis of autism has been developed. This program includes a purpose-designed and built web-based learning package for working with children with autism plus a 1.5 hour simulation-based group education session, with an actor playing the role of the adolescent (Figure 8).

Figure 8. This is a photograph taken during simulation training showing the actor playing the adolescent and a member of staff working with the adolescent. Image credit: Royal

Children’s Hospital, Melbourne

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Two simulation scenarios are presented in the group training session firstly involving an aggressive adolescent with autism followed by a more complex scenario involving a non verbal adolescent with autism and intellectual disability who displays challenging behaviours. Each scenario is followed by a reflective debrief which explores what the participants did well, what the challenges were and what they would do differently next time. A pilot and feasibility study of a randomized controlled trial was conducted in a tertiary paediatric hospital to assess the intervention (Mitchell et al., 2020). Data from a pilot simulation program evaluation prior to this study, suggests that a two-hour simulation training for managing aggression in a child can improve participants’ self-reported confidence and competence levels in managing challenging behaviours with improved confidence levels lasting up to 6 months. Staff found the program to be an acceptable mode of training which 100% would recommend to colleagues. Preliminary data analysis of the simulation training program involving adolescents with autism suggests that it is acceptable and increases confidence levels in managing aggression and complex behaviours. A larger, multisite trial using this simulation training is feasible and should be the next step in this important area of research.

The importance of well-trained staff When Ben is 16, he is admitted to hospital to have his wisdom teeth removed. Ideal management would involve a pre-admission assessment to identify possible triggers for high risk behaviours and development of a personalized behavior support plan. Best practice may involve coordination of care to ensure Ben is scheduled for theatre early in the morning to reduce daytime fasting hours, reduce in-hospital waiting and provision of a low stimulus environment with appropriate distraction activities while waiting for admission to the operating suite. Consideration to the type of sedation should occur prior to hospitalization to maximise effect and success of administration. Staff caring for Ben will know Ben’s preferred communication methods and be able to identify behaviour triggers early that indicate that Ben is feeling anxious or distressed. A plan, which includes practical strategies, should be made in consultation with Ben’s family, to de-escalate and distract if Ben becomes agitated. This plan may utilize expertise in the hospital, such as Child Life Specialists, who are trained in supporting children through procedures. Stress points during the hospitalization process, such as transition to theatre, waking from the anaesthetic, transition to the ward, administration of medication and common hospital post-operative procedures should be identified, and supportive care provided pre emptively as per Ben’s personal behavior support plan. All staff looking after Ben will have had online and simulation training about preventing and deescalating high risk behaviours.

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Key points

e Staff need specialised training in the management of high risk behaviours in children with autism.

e Simulation-based group training in combination with purpose designed web-based learning materials may increase staff knowledge and understanding of working with children with autism especially during times of stress.

e Staff need to understand the individual characteristics of children with autism prior to admission.

e Behavioural support plans can help to identify possible triggers for high risk behaviours and provide a plan of care to minimise distress.

Recommendations

e Provide funding for a multi-site randomized controlled trial to evaluate the efficacy of simulation-based education in reducing behavioural emergencies.

e Provide regular, fit for purpose training to ensure acute care staff develop increased skills and confidence in managing behavioural emergencies.

e Ensure hospital staff and families work together to prevent children being placed in situations which lead to distress and possible high risk behaviours.

e Increase access to evidence-based training for all acute care hospital staff who work with children with autism.

References

Mitchell, M. J., Newall, F. H., Sokol, J., & Williams, K. J. (2020). Simulation-Based Education for Staff Managing Aggression and Externalizing Behaviors in Children With Autism Spectrum Disorder in the Hospital Setting: Pilot and Feasibility Study Protocol for a Cluster Randomized Controlled Trial. JMIR research protocols, 9(6), e18105. doi:10.2196/18105

Taghizadeh N, Davidson A, Williams K, Story D. (2015) Autism spectrum disorder (ASD) and its perioperative management. Paediatric Anesthesia Vol 25, Issue 11, Page 1076-1084.

Taghizadeh N, Heard G, Davidson A, Williams K, Story D. (2019) The experiences of children with autism spectrum disorder, their caregivers and health care providers during day procedure: A mixed methods study.

Paediatric Anesthesia Vol 29, |ssue 9, Page 927-937.

Parent mental health

Parenting a child with autism comes with a unique set of challenges, and current evidence shows parents of children with autism display high levels of common mental health disorders, such as depression and anxiety, as well as some less common disorders including schizophrenia spectrum disorder, and obsessive compulsive disorder (Schnabel et al., 2020). Mothers of children with a disability have also reported high levels of distress, with one study highlighting that 22% of mothers surveyed reported suicidality, and nearly half (48%) reporting either high or very high psychological distress (Gilson et al., 2018). It should also be recognised that as autism has a strong genetic component.

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Some parents, as well as their children, may also either have a diagnosis of autism, or a number of traits of autism, which may also impact on their parenting experience and mental health needs. Although much of the research and intervention studies undertaken so far have focused on maternal mental health, with fathers less often included in both research and targeted during parenting interventions (Rankin, Paisley, Tomeny, & Eldred,

  1. fathers also need sufficient support, guidance, and tailored interventions. A variety of programs have been developed to support parents of children with autism to reduce symptoms of stress, depression and anxiety (Sohmaran & Shorey, 2019), and there is some evidence that these programs can be effective in supporting parents, as well as improving the overt behaviour of parents towards their children (Gould et al., 2018).

Despite evidence for the effectiveness of various parenting programs, and parents reporting a need for them, there are a number of barriers making access to support for problematic. Barriers to access include caregiving duties making attending appointments difficult as well as parents not perceiving their mental health need as serious enough to require support (Gilson et al., 2018). There is also a need to grow the skills of mental health professionals to effectively identify parents who require support, as well as increase training opportunities (Gilson et al., 2018).

As a child develops and grows, their needs change; the journey of their parents and their needs also changes and evolves. We know that parents express a preference for different types of support (such as individual counselling, rather than group-based approaches and vice versa), and services should be flexible in responding to those needs. Parenting support also needs to be tailored to different points in the autism journey. Although support for parents is considered most critical at the time of diagnosis (Gilson, Johnson, et al., 2018), there is emerging research into the benefits of support for parents during the pre-diagnosis stage, a time of particular uncertainty and stress (DePape & Lindsay, 2015; Hennel et al., 2016; Ward, Sullivan, & Gilmore, 2016). It is imperative that services are designed in such a way that parents have access to different programs to support their own mental health needs at these different time points, enabling them to create and sustain a positive relationship with their child, and with each other. In addition, creating a workforce with the necessary skills and training to be able to support these parents across services is also needed, with recent efforts being made in Australia to meet these needs (Davis et al., 2019).

Well supported parents

As alluded to above, families with a child with autism require well-coordinated, and holistic care. Interventions aimed at improving the capacity of the workforce to address these needs, as well as interventions to directly address mental healthcare needs of parents are required.

A recent service and training innovation undertaken by members of our team, was developed through collaboration between academics and clinicians in partnership with service providers. Davis and colleagues (Davis et al., 2019) delivered and evaluated a capacity building intervention program, for key workers to support the wellbeing of parents

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of children with a disability, within an Early Childhood Intervention Service. Upskilling workers enabled them to provide holistic best practice care to families, as well as promoting a culture of supporting parents into these services.

Supporting Caria’s parents

Finding appropriate respite was challenging for Caria’s parents, given Caria’s reluctance to be cared for by people outside of the family. When Caria’s mother reached out for support, online programs could be provided through her care team, allowing her to connect with a psychologist, and other parents experiencing similar struggles.

In terms of directly addressing the mental health needs of parents themselves, Acceptance and Commitment Therapy (ACT) is one therapeutic approach increasingly being used to support parent wellbeing. It has a focus on living one’s life in accordance with personal values, as well as developing the capacity to respond flexibly to both child behaviour, as well as the parents own internal thoughts and emotions. A recent systematic review and meta analysis indicates such programs can be effective at lowering self-reported stress, anxiety and depressive symptoms in parents, as well as improvements in child functioning (Byrne, at al., 2020). The utility of adapting this approach to online programs is particularly pertinent to families caring for a child with autism, given that a commonly reported barrier to accessing care in this population is a lack of respite, or caregiving options outside of the family home. ACT-based online interventions have shown to be effective in addressing wellbeing in parents who have a child with cerebral palsy (Whittingham et al., 2016), and there is immense promise in adapting and translating such services to support parents of children with autism within Australia.

Key points

e Families need support for the point that autism is suspected, through to receiving a potential diagnosis and beyond, with all time points associated with a high level of stress.

e Parents of children with autism have a high prevalence of common mental health symptoms, such as anxiety, depression and stress.

e Families vary in their preference and need for mental health services, including individual versus group-based interventions.

Recommendations

e Increase funding for mental health professionals with expertise in autism and parental mental health, to be embedded within autism specific services, including ECI services. e Increase funding to develop and deliver innovative telehealth support programs for parents, responsive to both the needs of the family, as well as ongoing constraints to service delivery within COVID-19 conditions.

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References

Byrne, G., Ghrada, A. N., O’Mahony, T., & Brennan, E. (2020). A systematic review of the use of acceptance and commitment therapy in supporting parents. Psychology and psychotherapy, e12282. doi:10.1111/papt.12282

Davis, E., Young, D., Gilson, K.-M., Reynolds, J., Carter, R., Tonmukayakul, U., . . . Carracher, R. (2019). A Capacity Building Program to Improve the Self-Efficacy of Key Workers to Support the Well-Being of Parents of

a Child With a Disability Accessing an Early Childhood Intervention Service: Protocol for a Stepped-Wedge

Design Trial. JMIR research protocols, 8(4), e12531. doi:10.2196/12531

DePape, A.-M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative health research, 25(4), 569-583. doi:10.1177/1049732314552455

Gilson, K. M., Davis, E., Johnson, S., Gains, J., Reddihough, D., & Williams, K. (2018). Mental health care needs and preferences for mothers of children with a disability. Child Care Health and Development, 44(3), 384-391. doi:10.1111/cch.12556

Gilson, K. M., Johnson, S., Davis, E., Brunton, S., Swift, E., Reddihough, D., & Williams, K. (2018). Supporting the mental health of mothers of children with a disability: Health professional perceptions of need, role, and challenges. Child Care Health and Development, 44(5), 721-729. doi:10.1111/cch.12589

Gould, E. R., Tarbox, J., & Coyne, L. (2018). Evaluating the effects of Acceptance and Commitment Training on the overt behavior of parents of children with autism. Journal of Contextual Behavioral Science, 7, 81-88. doi:10.1016/j.jcbs.2017.06.003

Hennel, S., Coates, C., Symeonides, C., Gulenc, A., Smith, L., Price, A. M., & Hiscock, H. (2016). Diagnosing autism: Contemporaneous surveys of parent needs and paediatric practice. Journal of paediatrics and child health, 52(5), 506-511. doi:10.1111/jpc.1315

Rankin, J. A., Paisley, C. A., Tomeny, T. S., & Eldred, S. W. (2019). Fathers of Youth with Autism Spectrum Disorder: A Systematic Review of the Impact of Fathers’ Involvement on Youth, Families, and Intervention. Clinical child and family psychology review, 22(4), 458-477. doi:10.1007/s10567-019-00294-0

Schnabel, A., Youssef, G. J., Hallford, D. J., Hartley, E. J., McGillivray, J. A., Stewart, M., . . . Austin, D. W. (2020). Psychopathology in parents of children with autism spectrum disorder: A systematic review and meta-analysis of prevalence. Autism, 24(1), 26-40. doi:10.1177/1362361319844636

Sohmaran, C., & Shorey, S. (2019). Psychological interventions in reducing stress, depression and anxiety among parents of children and adolescents with developmental disabilities: A systematic review and meta analysis. Journal of Advanced Nursing, 75(12), 3316-3330. doi:10.1111/jan.14166

Ward, S. L., Sullivan, K. A., & Gilmore, L. (2016). Practitioner Perceptions of the Assessment and Diagnosis of Autism in Australia. Australian Psychologist, 51(4), 272-279. doi:10.1111/ap.12211

Whittingham, K., Sanders, M. R., McKinlay, L., & Boyd, R. N. (2016). Parenting Intervention Combined With

Acceptance and Commitment Therapy: A Trial With Families of Children With Cerebral Palsy. Journal of

pediatric psychology, 41(5), 531-542. doi:10.1093/jpepsy/jsv118

Conclusion

Supporting Ben and Caria’s independence, participation and quality of life If we picture the future for children like Ben and Caria we would see assessments that use a dimensional approach which are personalised according to individual strengths and difficulties. Services and systems would be timely, well-coordinated, easy to navigate and accessible. Interventions would be based on the best available evidence and there would be a clear understanding of the optimal amount, type and timing of interventions to support the individual with autism, their family and those working with them. These interventions would be flexible across the lifespan. The priorities, needs and voices of individuals with autism and their families would be central to their care. The ultimate goals of assessments, interventions and supports are to maximise Ben and Caria’s opportunities for participation and quality of life.