Autism CRC

Dietary management is essential to prevent obesity and related complications in people with Prader-Willi syndrome (PWS). Although PWS guidelines recommend controlled, energy-restricted diets, little is known about the diets of people with PWS in Australia. This study investigated nutritional adequacy and diet quality in this population. Diets of 18 adolescents and 26 adults participating in a clinical trial of an exercise intervention were assessed using the Australian Eating Survey Food Frequency Questionnaire. Diet alignment with the Australian Dietary Guidelines was determined. Energy requirements were calculated from height and energy needs, based on body mass index (BMI) z-score or BMI category. Diet quality was measured using the Australian Recommended Food Score. Statistical analyses compared outcomes between BMI categories, age groups and living arrangements. Ten adolescents and 21 adults were overweight or obese. Diets exceeded recommended energy intakes by 85%-90%, but on average aligned with Australian Dietary Guidelines. People above the healthy weight range were less likely to be within the PWS-recommended energy intake (p < 0.01). Most met essential nutrient recommendations, except for excessive saturated fat and sodium, and inadequate calcium, iron and magnesium intake. The majority met recommended servings for three of the core food groups, with exceptions of grains and dairy. More than half of the participants exceeded recommended limits for discretionary food. People in supervised residences showed a higher vegetable intake but lower fruit variety. Overall diet quality and BMI distribution did not differ between living arrangements. This study highlights the dietary patterns and the high prevalence of overweight and obesity in Australians with PWS. Overweight and obesity occurred despite strong adherence to Australian healthy dietary guidelines. PWS appropriate energy-restricted diets, including low-fat, calcium and iron-rich foods, are recommended to enhance health outcomes.

Background/Objectives: Autism spectrum disorder (ASD), a neurodevelopmental condition characterised by social and communication differences, is complex and aetiologically heterogeneous. Untargeted metabolomics is emerging as a tool in screening for biochemical abnormalities. This research was conducted using the Australian Autism Biobank resource and involved analysis of plasma metabolites to characterise metabolite differences between autistic children and controls. Methods: We sought to identify molecular signatures in the plasma of study subjects using mass-spectrometry methods. We included 955 untargeted plasma metabolites from autistic children (n = 491; 2–18 years; 78% male) and control subjects (n = 97; 2–17 years of age; 51% male). Statistical analyses were performed using questionnaire data for both groups, including standardised scores from the Autism Diagnostic Observation Schedule—Second Edition (ADOS-2), which measures the severity of autism-related behaviours. We also evaluated intellectual disability by examining the relationships between metabolites and clinical phenotypes. Results: After controlling the false discovery rate at 5%, we identified significant negative associations between the uncharacterised metabolites X-21383 and X-24970 and ASD status (p = 1.85 × 10−6 and p = 1.92 × 10−5 respectively). X-21383 was also found to be significantly reduced in autistic children with coexisting intellectual disability when compared with controls (p = 6.06 × 10−6). No significant associations were identified between the metabolite data and ADOS-2 scores. However, greater levels of X-16938, N1-methyladenosine, and 2-oxoarginine were found to be suggestively associated with higher ADOS-2 scores (p = 2.95 × 10−4–9.6 × 10−5). Conclusion: This metabolomics study in the Australian Autism Biobank has identified several novel metabolites associated with core autism diagnostic behaviours.

Autistic people face significant barriers when accessing healthcare, which contribute to health disparities and unmet needs. While emerging research has described the experiences of autistic individuals accessing eye care, little is known about the perspectives of eye care professionals. This study aimed to examine autism-related knowledge, self-efficacy and attitudes among a sample of eye care professionals, and to explore their clinical experiences, perceived challenges and support needs when providing care to autistic patients. A mixed-methods design was used, combining quantitative survey data and qualitative content analysis. A total of 198 eye care professionals (optometrists, n = 107; ophthalmologists, n = 52) predominantly from Australia (n = 84), the USA (n = 79) and the United Kingdom (n = 20) completed an online survey. Regression analyses examined whether professional role, country, age, experience, personal connection to autism and frequency of contact predicted autism knowledge, self-efficacy and disability attitudes. Correlations explored relationships among these three variables. Open-ended responses were analysed using conventional content analysis. Participants reported moderately high levels of self-efficacy, autism knowledge and positive disability attitudes, yet only 14% perceived they had received formal autism-specific training. Frequent clinical contact with autistic individuals was the strongest predictor of higher self-efficacy (p < 0.001). Qualitative analysis identified common challenges (e.g., sensory sensitivities, time constraints and communication barriers) and practical strategies (e.g., flexible testing, sensory accommodations and clear communication). Participants expressed a strong desire for further training and system-level supports to provide more accessible, person-centred care. Eye care professionals in this sample appeared motivated to support autistic patients, but often perceived a lack of structured training and identified systemic constraints that limited their capacity to provide accessible services. Practical, autism-informed resources, developed in collaboration with autistic people, alongside changes in clinical policy and workflow, may help address these challenges.

ABSTRACT Research on neurodivergent students in Higher Education has increased but primarily focuses on coursework students, overlooking those in research degrees. To address this gap, we conducted a systematic review about the experience of neurodivergent research students which included a mix of empirical research and reflections on lived experience. Our analysis of 31 included articles identified eight key themes shaping these students’ journeys: (1) academic cultures, structures, and expectations; (2) sensory and environmental challenges; (3) executive functioning; (4) insufficient supports and accommodations; (5) relationships with others; (6) ableism and disclosure; (7) mental health; and (8) embracing neurodivergence. Although some strengths of neurodivergent thinking were noted, significant institutional barriers persist. These findings reveal critical gaps in academic inclusivity and highlight the urgent need for systemic changes to develop research degree programmes that recognise, support, and empower neurodivergent students. The review offers actionable insights for fostering more equitable and inclusive higher education environments.

Early intervention (EI) professionals play an important role in supporting autistic children and their families. When families come from minority ethnic communities, the early autism journey is often more complex than for native-born families for caregivers and professionals alike. Whilst there is growing awareness about parents’ experiences, we have little data from EI professionals on what can be done to improve the experiences, engagement and outcomes for these families. Here, we sought professional insights on their efforts to provide early autism supports for minority ethnic families, namely those from Chinese and South Asian backgrounds. Through a community-partnered participatory approach, we conducted semi-structured interviews with EI professionals who had experience working with autistic children and their families from Chinese and South Asian backgrounds in Australia ( n = 18). Data were analysed using inductive reflexive thematic analysis. Participating EI professionals described the challenge of developing a common language to talk about autism and supports with families, and often had different intervention priorities when compared to parents. They described observing parents’ own unmet mental health and wellbeing needs, which they felt were compounded by shame and stigma associated with autism within their specific communities. Moreover, professionals relayed their powerlessness in effectively supporting parents’ wellbeing due to a funding model focused solely on child goals. Participating professionals felt that the best way to work with families was to start by truly understanding the child, the parent and the family dynamics in order to tailor supports, as well as to encourage community connection and belonging. The insights offered by EI professionals into how early supports can be adapted to better meet the needs of minority ethnic parents and autistic children can inform more equitable policy-level decision-making for service provision. • Professionals described working with minority ethic parents and autistic children. • Finding a common language to discuss autism and create shared goals was difficult. • Professionals told of parents’ mental health needs which they could not support. • There should be open discussions about the merit of varied intervention approaches. • Individualised supports based on truly understanding families were endorsed.

Objective To evaluate the clinical utility, reliability, and validity of the second-generation aid for decision-making in occupation choice-2 (ADOC2), an iPad application designed for client-centred and occupation-centred goal setting. Design This study consisted of two components: (1) The development and refinement of the ADOC2 application, focusing on user interface design and structured goal-setting functionality; and (2) the clinical evaluation of its utility, validity, and reliability. Setting Eleven rehabilitation facilities in Japan (10 hospitals, 1 home-based setting). Participants A total of 116 occupational therapy clients and 56 occupational therapists participated in the study. Main measures Clinical utility was assessed using a structured questionnaire previously validated for the original ADOC. Validity was examined through correlations with the Canadian Occupational Performance Measure (COPM) and the EuroQol 5-Dimension 5-Level (EQ-5D-5L). Test–retest reliability of satisfaction and performance scores was analysed using weighted kappa coefficients. Results Over 90% of participants reported positive experiences with ADOC2 during the goal-setting process. The COPM scores showed strong correlations with ADOC2 ratings, while EQ-5D-5L scores showed weaker but expected correlations. Weighted kappa analyses indicated substantial to almost perfect agreement for test–retest reliability. Conclusions ADOC2 is a clinically useful, valid, and reliable tool for facilitating client-centred goal setting in occupational therapy practice.

BackgroundAdults with autism have a strong desire and need for employment that matches their strengths, skills, and interests. Yet, they are more likely to be un- or underemployed than their neurotypical peers. Facilitators to successful employment include positive attitudes toward and awareness of autism in the workplace, and provision of adequate support and accommodations, including mental health support. Despite previous workplace programs identifying the need for adapted recruitment and interviewing processes, awareness training, and ongoing employee support, there are no programs that specifically provide these supports and adaptations for employees with autism.ObjectiveIn this study protocol, we describe a framework for a new end-to-end supported workplace program for adults with autism that encompasses 8 key areas to promote inclusive workplaces and improve recruitment and retention of employees with autism.MethodsCandidates with autism (n=15) will complete 2 workplace skills training sessions at the University of Sydney’s Brain and Mind Centre, before attending a tailored interview, onboarding session, and paid 12-week placement at consulting firm Ernst and Young (EY). EY managers and colleagues (n=30) will complete a half-day awareness and inclusion training program before supporting the adults with autism through their 12-week placements. Tailored mental health support will also be provided. This mixed methods cohort study will assess the change in the daily functioning and well-being of employees with autism, as well as the change in the managers’ and colleagues’ knowledge, attitude, and confidence in working with adults with autism following the training programs. These changes will be analyzed using repeated measures of ANOVAs.ResultsData collection for this study was completed in February 2022. As of November 2024, data analysis was in progress. This study is expected to be submitted for publication in June 2025.ConclusionsThis study holds the potential to enhance the recruitment and retention of adults with autism, as well as their overall experience in the workplace.International Registered Report Identifier (IRRID)DERR1-10.2196/60806

There is growing research interest in examining how cultivating autistic adults’ self-compassion may improve their mental health and overall well-being. However, caution is needed in applying compassion-based therapies to autistic adults due to the phenomenon of backdraft, which is an intense, distressing reaction that can occur during self-compassion practices. Autistic individuals, often burdened with trauma and past adverse experiences, may be particularly vulnerable to backdraft. Preliminary research indicates that a large proportion of autistic adults report experiences of backdraft, indicating a significant potential for adverse short-term effects. This Perspective piece provides a brief overview of self-compassion and backdraft, highlights why backdraft is particularly relevant to self-compassion research involving autistic adults, and offers recommendations on how to study backdraft and clinically support autistic adults through their backdraft experiences. We advocate for research into the mechanisms of backdraft in autistic adults and stress the importance of trauma-sensitive therapeutic approaches. We also recommend that clinicians proactively address backdraft and provide the necessary support to ensure these therapies remain beneficial. This perspective underscores the importance of understanding the unique challenges autistic individuals face during self-compassion and compassion-based therapies and calls for rigorous research and clinical strategies to mitigate the risks associated with backdraft.

There has been a growing focus on the importance of understanding strengths in children with neurodevelopmental conditions and how such knowledge can support clinical practices. However, limited research has explored systematic reports of strengths from caregivers of children with neurodevelopmental conditions, most commonly autism. In this study, we explored caregiver-identified strengths in children attending their first neurodevelopmental assessment. Caregivers of 686 children attending a tertiary assessment service answered a survey question about their children’s strengths. Content analysis identified 61 unique categories of strengths, which were grouped into six themes: cognitive and intellectual, social and interpersonal, hobbies and passions, character and personality, physical, and behavioural. The most frequently reported specific strengths were kind caring, and compassionate, social and friendly, loving and affectionate, music singing and dancing, and good memory recall. The breadth of positive strengths identified here may reflect the larger population sampled or the diversity of presentations in this cohort. We then present a caregiver checklist, the Child Autism and Neurodevelopment Strengths (CANS) Checklist, that was developed with community representatives, to inform assessment and feedback of child strengths. We discuss what is required to use this knowledge to inform strengths-based practices that can support clinical practice and inform on child development and family well-being.Lay There has been a growing focus on the importance of understanding strengths in children with neurodevelopmental conditions, but there is little research exploring caregiver-reported strengths at the time of diagnostic assessment. In this study, we explored caregiver-identified strengths in 686 children who were attending a neurodevelopmental assessment. Content analysis identified 61 unique categories of strengths, which we grouped into six main themes. These six themes were cognitive and intellectual, social and interpersonal, hobbies and passions, character and personality, physical, and behavioural. The most common strengths identified by caregivers were ‘kind, caring, and compassionate’, ‘social and friendly’, ‘loving and affectionate’, ‘music, singing, and dancing’, and ‘good memory recall’. Based on these strengths, we present a checklist that was developed with community representatives, to make sure a strengths-based framework can be used during the diagnostic process. We discuss how we can use this knowledge to develop strengths-based practices that can support clinical practice and inform on child development and family well-being.