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Emotion regulation has been proposed to be a transdiagnostic factor in the development and maintenance of psychopathology in the general population, yet the nature of the relationships between emotion regulation strategy use and psychological well-being has not been comprehensively explored in individuals with autism spectrum disorder (ASD). The aim of this study was to assess how the individual differences in self-reported emotion regulation strategy use relate to levels of both positive and negative psychological well-being. In total, 56 individuals with ASD aged 14–24 years (M age = 18.15; SD age = 2.30) completed Emotion Regulation Questionnaire, Diagnostic and Statistical Manual of Mental Disorders-5 Generalized Anxiety Disorder Dimensional Scale, Patient Health Questionnaire-9, Warwick-Edinburgh Mental Well-being Scale and Autism-Spectrum Quotient – Short. Individuals were grouped into four clusters based on their Emotion Regulation Questionnaire subscale scores. Individuals in the high suppression and low reappraisal group expressed higher depressive symptoms and lower positive well-being when compared with the low suppression and high reappraisal group. Interestingly, individuals who self-reported using both high suppression and reappraisal expressed relatively high positive well-being and low depression symptoms. We suggest that the maladaptive effect of habitual suppression usage may be buffered by the habitual use of reappraisal, and this interaction between adaptive and maladaptive emotion regulation strategy use has clinical implications.

Purpose There is a significant knowledge gap regarding the lives of adults on the autism spectrum. Some literature suggests significant health and mental health inequalities for autistic adults, yet there is a lack of comprehensive longitudinal studies exploring risk factors. Further, most research does not include the perspective of autistic adults in its conduct or design. Here, we describe the baseline characteristics and inclusive research approach of a nationwide longitudinal study. Participants The Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Adults with Autism (ALSAA) is a questionnaire-based longitudinal study of autistic adults (25+ years old) with follow-up at 2-year intervals. Autistic advisors were involved in each stage of research apart from data analysis. Three questionnaires were developed: self-report, informant report (ie, proxy report) and carers (ie, carer experiences and characteristics). Findings to date An inclusive research protocol was developed and agreed with autistic advisors. Baseline data were collected from 295 autistic adults (M=41.8 years, SD=12.0) including 42 informant responses, 146 comparison participants and 102 carers. The majority of autistic participants (90%) had been diagnosed in adulthood (M=35.3 years, SD=15.1). When compared with controls, autistic adults scored higher on self-report measures of current depression and anxiety. Participant comments informed ongoing data gathering. Participants commented on questionnaire length, difficulty with literal interpretation of forced response items and expressed gratitude for research in this area. Future plans A large comprehensive dataset relating to autistic adults and their carers has been gathered, creating a good platform for longitudinal follow-up repeat surveys and collaborative research. Several outputs are in development, with focus on health service barriers and usage, caregivers, impact of diagnosis in adulthood, further

Introduction: Both genetic and nongenetic factors contribute to the risk profile of young onset dementia (YOD), but risk factors often cooccur. This matched case-control study examined whether nongenetic risk factors cluster together, to inform targeted prevention efforts. Methods: Ninety-six participants with non autosomal-dominant degenerative and/or vascular YOD and 175 controls were recruited to 2 Australian epidemiological studies. Risk exposure was retrospectively self-reported and/or informant-reported. Results: Each additional exposure increased the risk for YOD, though only where vascular dementia was included in the analysis. Cluster analysis identified 4 risk groups, one of which reported a high probability of exposure to all risks and a significantly higher risk for YOD.

DNA methylation, which is modulated by both genetic factors and environmental exposures, may offer a unique opportunity to discover novel biomarkers of disease-related brain phenotypes, even when measured in other tissues than brain, such as blood. A few studies of small sample sizes have revealed associations between blood DNA methylation and neuropsychopathology, however, large-scale epigenome-wide association studies (EWAS) are needed to investigate the utility of DNA methylation profiling as a peripheral marker for the brain. Here, in an analysis of eleven international cohorts, totalling 3337 individuals, we report epigenome-wide meta-analyses of blood DNA methylation with volumes of the hippocampus, thalamus and nucleus accumbens (NAcc)—three subcortical regions selected for their associations with disease and heritability and volumetric variability. Analyses of individual CpGs revealed genome-wide significant associations with hippocampal volume at two loci. No significant associations were found for analyses of thalamus and nucleus accumbens volumes. Cluster-based analyses revealed additional differentially methylated regions (DMRs) associated with hippocampal volume. DNA methylation at these loci affected expression of proximal genes involved in learning and memory, stem cell maintenance and differentiation, fatty acid metabolism and type-2 diabetes. These DNA methylation marks, their interaction with genetic variants and their impact on gene expression offer new insights into the relationship between epigenetic variation and brain structure and may provide the basis for biomarker discovery in neurodegeneration and neuropsychiatric conditions.

Purpose People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID. Participants The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12-43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29-73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services. Findings to date This study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population. Future plans Within the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders.

Leisure participation is important for well-being and has been attributed to improved quality of life for autistic individuals. Rigorous studies exploring the leisure participation of autistic adults are sparse. This study aimed to compare the type of leisure activity and frequency of participation between autistic adults and neurotypical adults as well as compare and identify factors associated with their leisure satisfaction. Data for 145 autistic and 104 neurotypical adults were obtained from time point one of the Australian Longitudinal Study of Adults with Autism. The primary outcome measure used was the Leisure Satisfaction Scale. Autistic adults were less satisfied with their leisure overall (mean = 3.29, standard deviation = 0.75) compared with neurotypical adults (mean = 3.69, standard deviation = 0.55). Multiple linear regression revealed being younger and reporting less depressive symptoms were significantly associated with higher leisure satisfaction in autistic but not neurotypical adults. Engagement in solitary leisure activities was comparable across participants, but socialising in person was predominated by neurotypical adults. Leisure activity preferences of autistic adults’ and the frequency of their leisure participation are important factors for clinicians to understand when working with this population and tailoring well-being interventions.

Purpose People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID. Participants The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12–43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29–73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services. Findings to date This study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population. Future plans Within the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders.

The largest group of recipients of pediatric gastrostomy have neurological impairment with intellectual disability (ID). This study investigated trends in first gastrostomy insertion according to markers of disadvantage and ID etiology. Linked administrative and health data collected over a 32-year study period (1983–2014) for children with ID born between 1983 and 2009 in Western Australia were examined. The annual incidence rate change over calendar year was calculated for all children and according to socioeconomic status, geographical remoteness, and Aboriginality. The most likely causes of ID were identified using available diagnosis codes in the linked data set. Of 11,729 children with ID, 325 (2.8%) received a first gastrostomy within the study period. The incidence rate was highest in the 0–2 age group and there was an increasing incidence trend with calendar time for each age group under 6 years of age. This rate change was greatest in children from the lowest socioeconomic status quintile, who lived in regional/remote areas or who were Aboriginal. The two largest identified groups of ID were genetically caused syndromes (15.1%) and neonatal encephalopathy (14.8%). Conclusion: Gastrostomy is increasingly used in multiple neurological conditions associated with ID, with no apparent accessibility barriers in terms of socioeconomic status, remoteness, or Aboriginality.What is Known:• The use of gastrostomy insertion in pediatrics is increasing and the most common recipients during childhood have neurological impairment, most of whom also have intellectual disability (ID).What is New:• Nearly 3% of children with ID had gastrostomy insertion performed, with the highest incidence in children under 3 years of age.• Gastrostomy use across different social groups was equitable in the Australian setting.

Background: People with Autism Spectrum Disorder (ASD) are at significantly increased risk of suicidal thoughts and behavior. Given that social difficulties in ASD often lead to social isolation, which can in turn increase the risk for depression, this study examined loneliness and social support as potential risk and protective factors associated with depression and suicidal ideation. Method: The sample comprised 185 people (92 females) with ASD aged 14 to 80 years who were participating in a national survey. Results: Forty-nine percent of participants returned scores in the clinical range for depression and 36% reported recent suicidal ideation. Females, comprising almost 50% of the sample, returned higher depression scores than males, however no differences were identified between males and females in terms of suicidal ideation. Regression analyses revealed that loneliness, satisfaction with social support, and ASD traits predicted depression scores. Satisfaction with social support predicted suicidal ideation, however, it was no longer a significant predictor after the effects of depression were taken into account. Path analysis showed that ASD trait severity was independently related to depression, that the effect of number of social supports on depression was mediated by loneliness and satisfaction with social support, and that effects of loneliness and satisfaction with social support on suicidal ideation were mediated by depression. The pattern of relationships was nearly identical for males and females. Conclusions: This study supports a model whereby loneliness and social support operate respectively as protective and risk factors for depression and suicidal ideation in ASD.

OBJECTIVE: Gastrostomy insertion in pediatrics is usually used in children with complex needs and severe disability. The accessibility and acceptance of the procedure is increasing but population-based occurrence data are lacking and there is limited understanding of its use in clinical subgroups. METHODS: This birth cohort study investigated the trends in first gastrostomy insertion among a pediatric population born between 1983 and 2009 in Western Australia using linked administrative and health data collected over a 32-year period (1983-2014). Indications were identified using diagnosis codes from linked hospitalization data and grouped according to a refined classification system. Age and birth cohort patterns of first gastrostomy use, over calendar year and age respectively, were described. RESULTS: Of the 690,688 children born between 1983 and 2009, 466 underwent a gastrostomy insertion. Overall, the prevalence was approximately 7 cases per 10,000 births. New gastrostomy insertions were increasingly performed in children during the preschool years over calendar years and in successive birth cohorts. Children with a neurological disorder constituted the largest group receiving gastrostomy (n = 372; 79.8) including 325 (87.4%) with comorbid intellectual disability. CONCLUSIONS: New gastrostomy insertion among children who require long-term enteral feeding support increased over the study period. The procedure is most often performed in the context of severe neurological disability, including intellectual disability, and offers families potential for long-term home-based management of feeding difficulties.

Objectives: While obesity has been linked with lower quality of life in the general adult population, the prospective effects of present obesity on future quality of life amongst the elderly is unclear. This article investigates the cross-sectional and longitudinal relationships between obesity and aspects of quality of life in community-dwelling older Australians. Method: A 2-year longitudinal sample of community dwellers aged 70–90 years at baseline, derived from the Sydney Memory and Ageing Study (MAS), was chosen for the study. Of the 1037 participants in the original MAS sample, a baseline (Wave 1) sample of 926 and a 2-year follow-up (Wave 2) sample of 751 subjects were retained for these analyses. Adiposity was measured using body mass index (BMI) and waist circumference (WC). Quality of life was measured using the Assessment of Quality of Life (6 dimensions) questionnaire (AQoL-6D) as well as the Satisfaction with Life Scale (SWLS). Linear regression and analysis of covariance (ANCOVA) were used to examine linear and non-linear relationships between BMI and WC and measures of health-related quality of life (HRQoL) and satisfaction with life, adjusting for age, sex, education, asthma, osteoporosis, depression, hearing and visual impairment, mild cognitive impairment, physical activity, and general health. Where a non-linear relationship was found, established BMI or WC categories were used in ANCOVA. Results: Greater adiposity was associated with lower HRQoL but not life satisfaction. Regression modelling in cross-sectional analyses showed that higher BMI and greater WC were associated with lower scores for independent living, relationships, and pain (i.e. worse pain) on the AQoL-6D. In planned contrasts within a series of univariate analyses, obese participants scored lower in independent living and relationships, compared to normal weight and overweight participants. Longitudinal analyses found that higher baseline BMI and WC were associated with lower inde

Background The aim of this study was to explore and characterize the nature of the inter-relationship between cognitive reappraisal and expressive suppression emotion regulation strategies and depressive symptoms. Method One hundred and twenty-one adolescents and adults with ASD aged 14–79 years (Mage = 32.18; SDage = 15.71) completed the Emotion Regulation Questionnaire, Patient Health Questionnaire-9, and Autism Spectrum Quotient-Short (AQ-Short). Individuals were recruited into two nation-wide studies. Participants self-reported a clinical diagnosis of ASD and had an AQ-Short score above the suggested cut-off of 65. Correlation and regression analyses, independent-samples t-tests, Kruskal-Wallis, and post-hoc Mann-Whitney U tests were conducted. Results Higher depression levels were related to high suppression and low reappraisal use. Both suppression and reappraisal predicted variance in symptoms of depression over and above ASD traits. Individuals who self-reported high suppression and low reappraisal use expressed higher depressive symptoms than individuals who reported high use of both suppression and reappraisal. Conclusions This is the first study in ASD that aimed to characterize the interactions between adaptive (reappraisal) and maladaptive (suppression) strategy use. Our results demonstrate that reappraisal may serve as a protective factor for mental health in individuals who habitually use maladaptive strategies such as suppression.

Introduction: Mental health professionals have reported that they have limited knowledge, skills, and confidence in the area of intellectual disability mental health. This article aims to learn from the experiences of people with intellectual disability about the attributes that may assist mainstream mental health professionals to provide them with a quality mental health service. Methods: Six people with intellectual disability participated in an interview or focus group. Thematic analysis was undertaken applying the Intellectual Disability Mental Health Core Competencies Framework. Results: The findings supported previous research for the need for mental health professionals to be adaptable, able to communicate, and work with a person’s support network. The study reinforced the need for professionals to undertake professional development in the area but also suggested that people with intellectual disability be included as educators and as peer workers. New attributes were identified, including the need for mental health professionals to be able to build rapport and trust through demonstrating their experience and respect for working with people with intellectual disability, and their ability to understand trauma and how it may influence mental health needs. Conclusions: The attributes identified in the study could be used to inform an intellectual disability mental health workforce development framework.

Objective To use linked administrative datasets to assess factors associated with emergency department (ED) presentation and psychiatric readmission in three distinctive time intervals after the index psychiatric admission. Design A retrospective data-linkage study. Setting Cohort study using four linked government minimum datasets including acute hospital care from July 2005 to June 2012 in New South Wales, Australia. Participants People who were alive and aged ≥18 years on 1 July 2005 and who had their index admission to a psychiatric ward from 1 July 2007 to 30 June 2010. Outcome measures ORs of factors associated with psychiatric admission and ED presentation were calculated for three intervals: 0-1 month, 2-5 months and 6-24 months after index separation. Results Index admission was identified in 35 056 individuals (51% -males) with a median age of 42 years. A total of 12 826 (37%) individuals had at least one ED presentation in the 24 months after index admission. Of those, 3608 (28%) presented within 0-1 month, 6350 (50%) within 2-5 months and 10 294 (80%) within 6-24 months after index admission. A total of 14 153 (40%) individuals had at least one psychiatric readmission in the first 24 months. Of those, 6808 (48%) were admitted within 0-1 month, 6433 (45%) within 2-5 months and 7649 (54%) within 6-24 months after index admission. Principal diagnoses and length of stay at index admission, sociodemographic factors, Charlson Comorbidity Index score, drug and alcohol comorbidity, intellectual disability and other inpatient service use were significantly associated with ED presentations and psychiatric readmissions, and these relationships varied somewhat over the intervals studied. Conclusion Social determinants of service use, drug and alcohol intervention, addressing needs of individuals with intellectual disability and recovery-oriented whole-person approaches at index admission are key areas for investment to improve trajectories after index admission.

RACTBackground: It is well established that people with an intellectual disability have high rates of mental health problems, yet rates of uptake of services do not match need. Aim: To identify the current literature pertaining to the barriers and facilitators to access to mental health services for people with an intellectual disability. Method: A systematic search identified English-language articles that addressed barriers or enablers to access, mental health services, and intellectual disability from 2005 to 2016. Results were synthesized according to Gulliford et al.’s four dimensions of access: availability, utilization, relevance and effectiveness, and equity. Results: Barriers and enablers were identified across all the dimensions. Organizational barriers, lack of services, and poor-quality services related to deficits in knowledge were among the barriers discussed in the literature. Facilitators included emphasis on interagency collaboration, and training and education. Substantial gaps were also identified, particularly in relation to the lived experience of these barriers. Conclusions: Further research and evaluation across all aspects of access to mental health care for people with an intellectual disability is needed.

People with intellectual disability in Australia experience poor mental health, are underrepresented in mental health policy, and encounter major barriers in accessing mental health services and treatments. This study interrogated the current representation of people with intellectual disability and recommended strategies to enhance the inclusion of intellectual disability in mental health policy. A policy analysis framework was developed that included context, stakeholders, process, and content. Nine pieces of Australian mental health legislation and 37 mental health policy documents were analyzed using the framework. Fifteen of the 37 documents included mention of intellectual disability with limited attention to the specific mental health needs of people with intellectual disability and mental illness. Only two documents identified specific strategies or measurable actions and targets to improve the access of people with intellectual disability and mental illness to mental health services. The documents’ strengths that may be applied to develop inclusive intellectual disability mental health policy included being values-based, recognizing diversity, taking a life-course approach, focusing on workforce development, and ensuring checks and balances. An inclusive approach to the development and implementation of intellectual disability mental health policy will best meet the mental health needs of individuals with intellectual disability. An inclusive policy approach will be based on a sound evidence-base and include a comprehensive understanding of the context in which the policy is developed; consultation with key stakeholders including people with intellectual disability and mental illness, their family and carers, and those who work with them; cross-sector collaboration and workforce training. An inclusive approach to the development and implementation of intellectual disability mental health policy using an integrated knowledge translation approach will address

Background: People with intellectual disability (ID) experience a range of health disparities. Little is known about differential primary care prescribing patterns for people with and without ID. Aim: To compare medications recommended by GPs at encounters where ID is recorded versus other encounters. Design & setting: Analysis of national Australian GP medication data from the Bettering the Evaluation and Care of Health (BEACH) programme, January 2003-December 2012 inclusive. Method: Medication recommendations made at encounters where an ID-defining problem was recorded as a reason for encounter (RFE) and/or as a problem managed, were allocated to the 'ID group' (n = 563). These encounters were compared with all other encounters (the 'non-ID group', n = 1 004 095) during the study period. Following age-sex standardisation of ID group encounters, significant differences were determined by non-overlapping 95% confidence intervals (CIs). Results: Antipsychotics and anticonvulsants were recommended more frequently at ID group encounters than at non-ID group encounters. Antidepressant and anxiolytic recommendation rates did not differ between groups. Narcotic analgesic and antihypertensive recommendations were significantly lower at ID group encounters. Conclusion: Higher rates of epilepsy and mental illness, and off-label use of some antipsychotics and anticonvulsants for behaviour management in people with ID, may have contributed to medication recommendations observed in this analysis. Lower narcotic analgesic recommendations at ID group encounters may relate to complex presentations and the nature of problems managed, while lower antihypertensive recommendations may indicate some potential omission of routine blood pressure measurement.

General cognitive function is a prominent and relatively stable human trait that is associated with many important life outcomes. We combine cognitive and genetic data from the CHARGE and COGENT consortia, and UK Biobank (total N = 300,486; age 16-102) and find 148 genome-wide significant independent loci (P < 5 × 10-8) associated with general cognitive function. Within the novel genetic loci are variants associated with neurodegenerative and neurodevelopmental disorders, physical and psychiatric illnesses, and brain structure. Gene-based analyses find 709 genes associated with general cognitive function. Expression levels across the c

Objectives: To investigate mortality and its causes in adults over the age of 20 years with intellectual disability (ID). Design, setting and participants: Retrospective population-based standardised mortality of the ID and Comparison cohorts. The ID cohort comprised 42 204 individuals who registered for disability services with ID as a primary or secondary diagnosis from 2005 to 2011 in New South Wales (NSW). The Comparison cohort was obtained from published deaths in NSW from the Australian Bureau of Statistics (ABS) from 2005 to 2011. Main outcome measures: We measured and compared Age Standardised Mortality Rate (ASMR), Comparative Mortality Figure (CMF), years of productive life lost (YPLL) and proportion of deaths with potentially avoidable causes in an ID cohort with an NSW general population cohort. Results: There were 19 362 adults in the ID cohort which experienced 732 (4%) deaths at a median age of 54 years. Age Standardised Mortality Rates increased with age for both cohorts. Overall comparative mortality figure was 1.3, but was substantially higher for the 20-44 (4.0) and 45-64 (2.3) age groups. YPLL was 137/1000 people in the ID cohort and 49 in the comparison cohort. Cause of death in ID cohort was dominated by respiratory, circulatory, neoplasm and nervous system. After recoding deaths previously attributed to the aetiology of the disability, 38% of deaths in the ID cohort and 17% in the comparison cohort were potentially avoidable. Conclusions: Adults with ID experience premature mortality and over-representation of potentially avoidable deaths. A national system of reporting of deaths in adults with ID is required. Inclusion in health policy and services development and in health promotion programmes is urgently required to address premature deaths and health inequalities for adults with ID.

Objectives: Psychologists play a pivotal role in meeting the mental health needs of people with intellectual disabilities. The aim of this study was to investigate the perceptions of Australian psychologists who work with adults with intellectual disabilities and mental ill health regarding their clinical competencies, workplace supports and training needs. Method: One hundred and nine psychologists in Australia completed a self-report online survey exploring clinical attitudes and practices when working with adults with intellectual disabilities and mental ill health. Provisional, generalist and clinical psychologists from a range of disability and non-disability work settings were recruited. Results: Findings revealed that provisional, generalist and clinical psychologists reported no significant differences in levels of agreement on self-perceived clinical competencies in conducting mental health assessments. Psychologists in private practice and in non-government organisations reported more adequate workplace resources to support mental health assessments for people with intellectual disabilities than did psychologists in government settings. Psychologists across work settings expressed similar views in self-perceived clinical competencies and workplace training supports. The majority of psychologists reported limited formal academic training in intellectual disabilities and expressed a need for continual and specialised training in mental health and intellectual disabilities. Conclusions: Implications for further training in mental health and intellectual disabilities highlight the need to cater to the specific needs of psychologists in the field.

BACKGROUND/AIMS: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters. METHODS: Eighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service. RESULTS: Although at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement. CONCLUSION: People with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.