Senior Research Fellow
BPsych BSc (Hons) PhD
Areas of research expertise: epidemiology of intellectual and developmental conditions; health and wellbeing of siblings and families.
Emma’s major research interests are in the epidemiology of intellectual and developmental conditions, and the wellbeing of children and their families. The scale of her research varies from analysing data for the whole population, data collected for specific sub-populations, family-level data, and individual data. Her research uses a variety of methods and analyses, including participatory research elements, which aim to complement, enrich, and provide a holistic perspective.
Emma currently leads an NHMRC-funded program of work focusing on the health and wellbeing of siblings of children with developmental conditions. The research incorporates innovative methods, collecting data from birth to young adulthood at the individual, family and population levels. The aim is to explore the unique experiences of siblings and siblinghood, including the joys and challenges. It endeavours to understand sibling strengths and needs, what characterises healthy sibling relationships, and to help find ways to enhance sibling health and wellbeing.
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Projects
The Sibling Project focuses on the wellbeing, relationships and needs of children, adolescents and emerging adults who have a sibling with a developmental disability.
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Publications
January 2024
Stability and change in self-reported risk and resilience factors associated with mental health of siblings of individuals with and without neurodevelopmental conditions over 15 months
Siblings of individuals with neurodevelopmental conditions (NDCs) are a minority population at higher genetic and environmental risk of poorer neurocognitive and psychosocial outcomes compared to siblings of individuals without NDCs.
Published research Child Disability Brain Tumour Research Child disabilityJanuary 2024Sertraline for anxiety in adults with a diagnosis of autism (STRATA): study protocol for a pragmatic, multicentre, double-blind, placebo-controlled randomised controlled trial
Selective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects.
Autism Spectrum Published research Child DisabilityNovember 2023A Co-Designed Online Education Resource on Gastrostomy Feeding for Parents and Caregivers to Support Clinical Care
Children with complex needs and severe disability may undergo gastrostomy insertion to support feeding difficulties. Parent education programs are critical components of clinical care pathways but there is little information on parent-reported educational needs. This study describes the collaborative process that yielded a resource to assist parents considering gastrostomy tube placement for their children, and the evaluation of the resource.
Published research Nutrition Child Disability Child disabilityOctober 2023Neurocognitive and self-reported psychosocial and behavioral functioning in siblings of individuals with neurodevelopmental conditions: a study using remote self-administered testing
This study compared and explored the neurocognitive profiles of siblings of persons with and without neurodevelopmental conditions (NDCs) and associations between objective test performance and self-reported psychosocial functioning.
Published research Child Disability Youth Health Youth mental health Child disability Behaviour problems Child and adolescent healthJuly 2023Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience
Siblings of children with intellectual disability have unique family experiences, varying by type of disability.
Published research Aboriginal Health & Wellbeing Rett Syndrome Child Disability Child disabilityJuly 2023Psychosocial and neurocognitive correlates of suicidal thoughts and behaviours amongst siblings of persons with and without neurodevelopmental conditions
Siblings of individuals with neurodevelopmental conditions (NDCs) have greater incidence of neuropsychiatric diagnoses and neurocognitive difficulties compared to siblings of persons without NDCs. Despite suicidality being labelled a global health crisis (WHO, 2014) and NDC siblings experiencing risk factors implicated in suicidality, no previous studies examined suicidality amongst adolescent and young adult siblings of persons with NDCs. Our study aimed to bridge this gap.
Autism Spectrum Published research Child Disability Youth mental healthApril 2023Hospitalizations from Birth to 28 Years in a Population Cohort of Individuals Born with Five Rare Craniofacial Anomalies in Western Australia
To describe trends, age-specific patterns, and factors influencing hospitalizations for 5 rare craniofacial anomalies.
Published research Human Development and Community Wellbeing Child Disability Computational Biology Child disabilityMarch 2023Individual-Level Risk and Resilience Factors Associated with Mental Health in Siblings of Individuals with Neurodevelopmental Conditions: A Network Analysis
Siblings of individuals with neurodevelopmental conditions (NDCs) are exposed to unique family environments and experience a range of psychosocial risk and resilience factors.
Published research Academic Biostatistics Child Disability Youth mental health Child disabilityDecember 2022Risk and resilience factors impacting the mental health and wellbeing of siblings of individuals with neurodevelopmental conditions: A mixed methods systematic review
This pre-registered systematic review synthesised and evaluated the existing literature on self-reported mental health and wellbeing of siblings of individuals with neurodevelopmental conditions.
Published research Child Disability Youth mental healthSeptember 2022Psychosocial Interventions and Support Groups for Siblings of Individuals with Neurodevelopmental Conditions: A Mixed Methods Systematic Review of Sibling Self-reported Mental Health and Wellbeing Outcomes
Siblings of persons with neurodevelopmental conditions (NDCs) have increased risk of poorer psychosocial functioning. This systematic review evaluated quantitative and qualitative evidence on sibling mental health and wellbeing outcomes following psychosocial interventions and the risk and protective factors associated with post-intervention outcomes.
Published research Child Disability Youth mental healthAugust 2022A systematic review of the biological, social, and environmental determinants of intellectual disability in children and adolescents
This systematic review aimed to identify the most important social, environmental, biological, and/or genetic risk factors for intellectual disability.
Published research Alcohol and Pregnancy and FASD Research Child Disability Autism Research Subsite: CliniKids Early Neurodevelopment and Mental Health Child disabilityAugust 2021Investigating associations between birth order and autism diagnostic phenotypes
Birth order effects have been linked to variability in intelligence, educational attainment and sexual orientation. First- and later-born children have been linked to an increased likelihood of an Autism Spectrum Disorder (ASD) diagnosis, with a smaller body of evidence implicating decreases in cognitive functioning with increased birth order.
Autism Spectrum Published research Academic Biostatistics Child Disability Autism Research Diabetes and Obesity Subsite: CliniKidsNovember 2020Investigating associations between birth order and autism diagnostic phenotypes
Birth order effects have been linked to variability in intelligence, educational attainment and sexual orientation. First- and later-born children have been linked to an increased likelihood of an Autism Spectrum Disorder (ASD) diagnosis, with a smaller body of evidence implicating decreases in cognitive functioning with increased birth order. The present study investigated the potential association between birth order and ASD diagnostic phenotypes in a large and representative population sample.
Autism Spectrum Published research Autism Research Subsite: CliniKidsSeptember 2020Systematic Review and Meta-analysis: Mental Health in Children
The behavioral phenotype of neurogenetic disorders associated with intellectual disability often includes psychiatric comorbidity. The objectives of this systematic review and meta-analysis were to systematically review the prevalence of psychiatric disorders and symptoms in children and adolescents
Published research Intellectual Disability Child Disability Youth HealthJuly 2020Survival of children and adolescents with intellectual disability following gastrostomy insertion
Whilst gastrostomy insertion was associated with lower survival rates than children without gastrostomy, survival improved with time
Published research Academic Biostatistics Intellectual Disability Child DisabilityApril 2020Hospital admissions in children with developmental disabilities from ethnic minority backgrounds
Children with CP and intellectual disability, particularly from minority backgrounds, were at higher risk of being admitted to hospital after the first year of life
Published research Academic Biostatistics Alcohol and Pregnancy and FASD Research Child DisabilityFebruary 2020Risk of Hospitalizations Following Gastrostomy in Children with Intellectual Disability
Gastrostomy was associated with health benefits including reduced all-cause and epilepsy hospitalizations, but was not protective against acute LRTI
Published research Intellectual Disability Child DisabilityFebruary 2020Prevalence of Motor Difficulties in Autism Spectrum Disorder: Analysis of a Population-Based Cohort
In this population-based cohort that included 2,084 children with autism aged ≤6 years, over one-third met the criteria for motor difficulties
Autism Spectrum Published research Child Disability Autism Research Youth Mental HealthJanuary 2020The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis
We argue that 'high functioning autism' is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations
Autism Spectrum Published research Child Disability Autism ResearchSeptember 2019Recurrence Risk of Autism in Siblings and Cousins: A Multinational, Population-Based Study
The present estimates of relative recurrence risks for autism spectrum disorder and childhood autism will assist clinicians and families in understanding autism risk
Autism Spectrum Published research Child DisabilityOctober 2019Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research
Building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research
Published research Child Disability Child EpidemiologySeptember 2019Diagnosis of Autism Spectrum Disorder According to Maternal-Race Ethnicity and Country of Birth: A Register-Based Study
An increased prevalence of autism spectrum disorder (ASD) among children of immigrant backgrounds has been observed
Autism Spectrum Published research Child DisabilityAugust 2019Are preterm birth and intra-uterine growth restriction more common in Western Australian children of immigrant backgrounds? A population based data linkage study
Our findings illustrate the vulnerabilities of children born to foreign women from low and middle-income countries
Published research Child DisabilityMarch 2019Epidemiology of gastrostomy insertion for children and adolescents with intellectual disability
Gastrostomy is increasingly used in multiple neurological conditions associated with intellectual disability, with no apparent accessibility barriers
Published research Intellectual Disability Child DisabilityJanuary 2019Risk of Developmental Disorders in Children of Immigrant Mothers: A Population-Based Data Linkage Evaluation
Increased risk of autism spectrum disorder with intellectual disability and cerebral palsy with intellectual disability for mothers of some foreign-born groups
Autism Spectrum Cerebral Palsy Published research Academic Biostatistics Intellectual Disability Alcohol and Pregnancy and FASD Research Child DisabilityNovember 2018Evolving Trends of Gastrostomy Insertion Within a Pediatric Population
New gastrostomy insertion among children who require long-term enteral feeding support increased over the study period
Published research Child DisabilityMarch 2018The Risk of Neurodevelopmental Disabilities in Children of Immigrant and Refugee Parents: Current Knowledge and Directions for Future Research
We investigated the literature from 2002 to 2016 describing the risk of ASD, intellectual disability and ADHD in children of refugee and immigrant backgrounds.
Published research Academic Biostatistics Child DisabilityJanuary 2018The prevalence of mental health disorders and symptoms in children and adolescents with cerebral palsy: a systematic review and meta-analysis
Mental health conditions and problems are often reported in children and adolescents with CP. A systematic review was undertaken to describe their prevalence.
Published research Child Disability Autism ResearchFebruary 2016Improved Survival in Down Syndrome over the Last 60 Years and the Impact of Perinatal Factors in Recent Decades
Improved survival for children born with Down syndrome over the last 60 years has occurred incrementally, but disparities still exist
Published research Intellectual Disability Child DisabilityApril 2015The aggregation of early-onset melanoma in young Western Australian families
Results indicated a strong familial basis of melanoma, with the higher than expected hazard ratio observed likely to reflect early-age at onset cases in this...
Children's Cancers Published researchApril 2014The triple challenges associated with age-related comorbidities in Down syndrome
Major increases in the survival of people with Down syndrome during the last two generations have resulted in extended periods of adulthood requiring...
Published research Intellectual Disability Child DisabilityJanuary 2014The Western Australian family connections genealogical project: Detection of familial occurrences of single gene and chromosomal Disorders
This study utilised a Western Australian (WA) genealogical database for the identification of single gene and chromosome disorders among families.
Published research Intellectual Disability Child DisabilityFebruary 2013Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983-1999: A population-based cohort study
ID and/or ASD were found to be associated with an increased risk of hospitalisation compared with the remainder of the population.
Autism Spectrum Published research Academic Biostatistics Intellectual Disability Child DisabilityJanuary 2013Maternal Conditions and Perinatal Characteristics Associated with Autism Spectrum Disorder and Intellectual Disability
Findings show that indicators of a poor intrauterine environment are associated with an elevated risk of ID, while for ASD, and particularly ASD without ID,...
Autism Spectrum Published research Intellectual Disability Child DisabilityJanuary 2013Application of Population-Based Linked Data to the Study of Intellectual Disability and Autism
Data linkage is the bringing together of specific datasets from different sources using demographic information on individuals within a population.
Autism Spectrum Published research Intellectual Disability Alcohol and Pregnancy and FASD Research Child DisabilityMarch 2011Autism and intellectual disability are differentially related to sociodemographic background at birth
We used population data on Western Australian singletons born from 1984 to 1999 (n = 398,353) to examine the sociodemographic characteristics of children...
Autism Spectrum Published research Academic Biostatistics Intellectual Disability Alcohol and Pregnancy and FASD Research Child Disability Autism ResearchFebruary 2011A comparison of autism prevalence trends in Denmark and Western Australia
Prevalence statistics for autism spectrum disorders (ASD) vary widely across geographical boundaries. Some variation can be explained by diagnostic methods...
Autism Spectrum Published research Academic Biostatistics Alcohol and Pregnancy and FASD Research Child DisabilityJanuary 2011The impact of single gene and chromosomal disorders on hospital admissions of children and adolescents: A population-based study
It is well recognized that genetic disease makes a significant contribution to childhood illness. Here, we present recent population data describing...
Published research Alcohol and Pregnancy and FASD Research Child DisabilityOctober 2010Unpacking the complex nature of the autism epidemic
The etiology of autism spectrum disorders is unknown but there are claims of increasing prevalence in many countries.
Autism Spectrum Published research Alcohol and Pregnancy and FASD Research Child DisabilityFebruary 2010Unpacking the complex nature of the autism epidemic
This paper discusses changes in diagnostic criteria, decreasing age at diagnosis, improved case ascertainment, diagnostic substitution, and social influences.
Autism Spectrum Published research Alcohol and Pregnancy and FASD Research Child Disability Autism ResearchJanuary 2010Increased longevity and the comorbidities associated with intellectual and developmental disability
The contributors, all world experts in their fields, also discuss what we can learn from the presence of co-morbidities.
Published research Intellectual Disability -
Education and Qualifications