Routinely collected data help estimate the prevalence of autism spectrum disorder (ASD) in jurisdictions without active autism surveillance. We created a population-based cohort of 1,211,834 children born in 2002-2015 in New South Wales, Australia using data linkage. Children with ASD were identified in three datasets -- disability services,…

This study investigates associations between initial levels and change in the quality of the relationships youth with intellectual disabilities (ID) share with their parents and teachers, and changes in their levels of depression over time. A sample of 395 youth with mild (48.3%) and moderate (51.7%) ID, aged between 11 and 22 (M = 15.69), were…

This study investigates the nature of the social interaction profiles observed among youth with intellectual disabilities (ID), defined while considering their relationships with their parents, peers, and teachers, as well as the implication of these profiles for self-esteem, aggressive behaviors, and prosocial behaviors. A sample of 393 youth…

This is the first study to investigate instrumental activities of daily living in older autistic adults. We conducted interviews with fifteen adults (mean age = 60.1, SD = 7.4, range = 50-73) from Australia with no intellectual disability. Analysis included both deductive and inductive steps, to categorise responses using the Occupational…

The objective of the study was to validate adapted versions of the Glasgow Anxiety Scale for people with Intellectual Disabilities (GAS-ID) simultaneously developed in English and French. A sample of 361 youth with mild to moderate intellectual disability (ID) (M = 15.78 years) from Australia (English-speaking) and Canada (French-speaking)…

The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt…

There has been a recent shift from person-first to identity-first language to describe autism. In this study, Australian adults who reported having a diagnosis of autism (N = 198) rated and ranked autism-terms for preference and offensiveness, and explained their choice in free-text. 'Autistic', 'Person on the Autism Spectrum', and 'Autistic…

In this paper, we report on a participatory oral history study documenting the lives of late-diagnosed autistic adults in Australia. We interviewed 26 autistic adults about their life history and the impact of late diagnosis. All were diagnosed after the age of 35, growing up in an era when autism was not well known. Using reflexive thematic…

The COVID-19 pandemic (2020) resulted in school closures and changes to school delivery. The aim of this study was to explore how these changes impacted on children on the autism spectrum. As part of an online survey, parents (n = 180) of school-aged children (9.3-16.5 years) on the autism spectrum in Australia were asked an open-ended question on…

This study examined whether parent-reported atypical development in their child's first year was associated with age of diagnosis and age when parents first needed to consult a specialist about their child's development. It involved 423 children who participated in the Australian Autism Biobank. Most parents retrospectively identified [greater or…

Aim: To determine whether short-phase Occupational Performance Coaching combined with service navigation support is feasible for families waiting for autism assessment. Method: A pilot feasibility study was conducted using a blinded randomization procedure that allocated participants to one of three trial arms: (1) face-to-face coaching, (2)…

The efficacy of the Australian Disability Employment Services (DES) for autistic jobseekers has not been examined and is currently undergoing Government reform. To help inform the new DES strategy, we sought the views of: 24 autistic individuals; seven family members of autistic individuals, and; 46 DES employees. Data were collected using surveys…

Effective parent-teacher partnerships improve outcomes for autistic students. Yet, we know little about what effective partnerships look like for parents of autistic children from different backgrounds. We conducted interviews with 17 Chinese parents of autistic children attending Australian kindergartens/schools to understand their experiences.…

Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults' journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis…

Although people diagnosed with autism spectrum disorder (ASD) are not more likely to commit crimes, they are overrepresented in the criminal justice system as reported by Howlin (Autism and Asperger syndrome: Preparing for adulthood, Routledge, 2004). This may, in part, be due to unfavourable interactions with the criminal judiciary. Evidence…