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11 result(s) for "Karlov, Lisa"
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Sociocultural factors associated with detection of autism among culturally and linguistically diverse communities in Australia
Background The age at which parents or caregivers first develop concerns about their child’s development has significant implications on formal diagnosis and intervention. This study aims to determine the sociocultural factors that are associated with the age and type of first concern reported by parents of autistic children among culturally and linguistically diverse (CALD) communities in Australia. We also assessed whether sociocultural factors predict autism traits measured in terms of social affect (SA), restricted and repetitive behaviours (RRB), and calibrated severity scores (CSS). Methods This study is a secondary data analysis of the data collected from six Autism Specific Early Learning and Care Centres (ASELCCs) as part of the Autism Co-operative Research Centre (CRC) program between 2015 and 2019. Data analysed in this study included a family history questionnaire with sociodemographic and sociocultural information, parent-reported age and type of first concern, and clinician/researcher administered Autism Diagnostic Observation Schedule - Second Edition (ADOS-2) which includes standardised domain-wise scores of social affect (SA) and restricted and repetitive behaviours (RRB) as well as calibrated severity scores (CSS), a measure of severity of autism. Primary analysis included multivariable linear regression models to examine the predictive influence of sociodemographic and sociocultural factors on the dependant variables of age of concern (AOC) and the autism traits (SA, RRB, and CSS). Results The mean AOC in the sample was 18.18 months and the most common concerns were speech/language delay, limited social interaction, and hyperactivity/behavioural changes. The multivariable linear regression models showed factors such as increase in age of child, those from a CALD background, annual family income, sibling’s autism diagnosis, and developmental concerns to be significantly associated with parental AOC. Additionally, we also found that increase in child’s age and CALD status to be significant predictors of autism trait (RRB) and severity measured in terms of the CSS score. Further, females (compared to males) were associated with higher difficulties with social communication and interaction skills. Conclusion Understanding key factors that contribute to early identification of autism can help tailor awareness programs for parents and caregivers, whilst also informing the development of services focused on serving all CALD communities.
Identification of subgroups of children in the Australian Autism Biobank using latent class analysis
Background The identification of reproducible subtypes within autistic populations is a priority research area in the context of neurodevelopment, to pave the way for identification of biomarkers and targeted treatment recommendations. Few previous studies have considered medical comorbidity alongside behavioural, cognitive, and psychiatric data in subgrouping analyses. This study sought to determine whether differing behavioural, cognitive, medical, and psychiatric profiles could be used to distinguish subgroups of children on the autism spectrum in the Australian Autism Biobank (AAB). Methods Latent profile analysis was used to identify subgroups of children on the autism spectrum within the AAB (n = 1151), utilising data on social communication profiles and restricted, repetitive, and stereotyped behaviours (RRBs), in addition to their cognitive, medical, and psychiatric profiles. Results Our study identified four subgroups of children on the autism spectrum with differing profiles of autism traits and associated comorbidities. Two subgroups had more severe clinical and cognitive phenotype, suggesting higher support needs. For the ‘Higher Support Needs with Prominent Language and Cognitive Challenges’ subgroup, social communication, language and cognitive challenges were prominent, with prominent sensory seeking behaviours. The ‘Higher Support Needs with Prominent Medical and Psychiatric and Comorbidity’ subgroup had the highest mean scores of challenges relating to social communication and RRBs, with the highest probability of medical and psychiatric comorbidity, and cognitive scores similar to the overall group mean. Individuals within the ‘Moderate Support Needs with Emotional Challenges’ subgroup, had moderate mean scores of core traits of autism, and the highest probability of depression and/or suicidality. A fourth subgroup contained individuals with fewer challenges across domains (the ‘Fewer Support Needs Group’). Limitations Data utilised to identify subgroups within this study was cross-sectional as longitudinal data was not available. Conclusions Our findings support the holistic appraisal of support needs for children on the autism spectrum, with assessment of the impact of co-occurring medical and psychiatric conditions in addition to core autism traits, adaptive functioning, and cognitive functioning. Replication of our analysis in other cohorts of children on the autism spectrum is warranted, to assess whether the subgroup structure we identified is applicable in a broader context beyond our specific dataset.
Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study
ObjectivesImplementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents’/caregivers’ experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting.DesignThis qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, ‘General Practice Surveillance for Autism’, a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically.ParticipantsTwelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed.SettingsAll interviews were completed over the phone.ResultsThere were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient–doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers.ConclusionThe findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting.Trial registration numberANZCTR (ACTRN12619001200178).
General practitioners’ perspectives regarding early developmental surveillance for autism within the australian primary healthcare setting: a qualitative study
Background Significant challenges remain in the early identification of child developmental disabilities in the community. Implementing supports and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental disabilities, including autism. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. Methods A qualitative research methodology with semi-structured interviews and thematic inductive analysis underpinned by grounded theory was utilised. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program (“GP Surveillance for Autism”) were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software. Inductive interpretive approach was adopted and data were analysed thematically. Results Twenty-three GPs across the two sites (NSW: n = 11; Victoria: n = 12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded eight major themes and highlighted common enablers such as the role of GPs in early identification and subsequent supports, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental disabilities, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. Conclusions The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental disabilities, including autism.
Factors Impacting Parental Quality of Life in Preschool Children on the Autism Spectrum
This study examined connections between parental quality of life (QoL) and features of children (autism severity, cognitive ability, behavioral profile, and sociodemographic factors). Parents of 97 children attending an autism-specific preschool completed the Quality of Life in Autism, Vineland Adaptive Behavior Scales and Child Behavior Checklist. The Autism Diagnostic Observation Schedule and Mullen Scales of Early Learning were also administered. Reduced restrictive/repetitive behavior and higher socialization and play/leisure scores were associated with better parental QoL. Better behavioral regulation and attention also predicted better QoL, as did stronger communication and reduced internalising behaviours. Findings indicate that a child’s level of autism specific traits, adaptive functioning and behavioral profile has greater impact on parental QoL than cognitive level.
Preschool Behavioral Problems: Links with Maternal Oxytocin and Caregiving Sensitivity in the Postnatal Period, and Concurrent Maternal Psychopathology and Attachment State-of-Mind
This study investigated maternal oxytocin, caregiving sensitivity and mother-to-infant bonding at 3-months postpartum as predictors of child behavior and psychological outcomes in the preschool years, when controlling for concurrent maternal negative emotional symptoms and adult attachment state-of-mind. Forty-five mother–child dyads were assessed at 3-months and 3.5 years postpartum using mix of questionnaires, observational, interview and biological methods. Results showed that lower levels of maternal baseline oxytocin at 3-months postpartum significantly predicted emotional reactivity in the child at 3.5 years. When maternal adult attachment state-of-mind and negative emotional symptoms were included, lower levels of maternal baseline oxytocin at 3-months postpartum significantly predicted withdrawn child behavior. In addition, unresolved adult attachment and maternal negative emotional symptoms were significantly associated child behavioral disturbance in a range of areas. Findings highlight maternal postnatal oxytocin as a potential indicator of children who may be more likely to show emotional reactivity and withdrawn behavior in the preschool years.
Dissemination of Early Intervention Program for Preschool Children on the Autism Spectrum into Community Settings: An Evaluation
We aimed to address a policy-relevant research area with high priority, namely disseminating early intervention for children on the autism spectrum into mainstream community settings. The study cohort comprised 47 children with a diagnosis of Autism Spectrum Disorder (ASD) receiving the Early Start Denver Model (ESDM) intervention: 23 children attending an Autism Specific Early Learning and Care Centre (ASELCC) and 24 children attending a mainstream preschool setting. Group comparisons revealed that the overall response to intervention was in the majority of cases not significantly different between settings. One difference was found in that children in the mainstream preschool setting showed a significant reduction in externalising behaviours compared to the children attending the autism-specific preschool. Intervention duration was found to influence outcomes with a one-month increase in duration found to improve expressive language skills. While the results need to be interpreted with caution due to the small sample size, these findings suggest that early intervention can be successfully delivered in both autism-specific and mainstream settings. However, those families needing additional parent support may be better served by a specialised service.
Impact of the COVID-19 Pandemic on Family Wellbeing in the Context of Neurodevelopmental Disorders
The primary aim was to assess both the type and degree of impact of the COVID-19 pandemic on child and family wellbeing in a cohort with neurodevelopmental disorders. This was a single time-point observational study utilizing a combination of surveys and standardized measures, which were administered to parents by researchers by telephone. The Child and Adolescent Neuropsychiatric Clinic of the Department of Clinical and Experimental Medicine, Catania University, Italy. In total, 200 caregivers completed the questionnaires on behalf of themselves and their child. They were predominantly mothers (88.00%) and primary caregivers (93.50%), with a mean age of 42.84 years (sd = 7.13). A questionnaire featured in a previous study was used to assess the impact of COVID-19 on general wellbeing, types of support, family health, home-based learning, and child behaviors. Children's diagnoses were recorded. Caregivers provided information about physical, mental, financial, and vocational wellbeing, and completed several standardised measures of mental health and well-being: the Kessler Psychological Distress Scale - K6; the General Anxiety Disorder Scale - GAD-2; and the WHO Well-being Scale - WHO-5. Overall, 58.50% of respondents agreed somewhat or strongly that their child's overall health and wellbeing had been impacted by the pandemic, while 47.74% felt that their own wellbeing as parents had been affected. Whilst home-based learning and disruption to services for children were noted as being significant, child wellbeing appeared to not be correlated with these but rather to restrictions, home isolation, and disruption to routine. Children with neurocognitive disorders and their families have been substantially impacted by the COVID-19 pandemic. It is expected that targeted resources and support services will be required in response to this increase in need.
Social communication deficits and restricted repetitive behavior symptoms in Tourette syndrome
Autism spectrum disorders (ASD) have been found to occur more frequently in individuals with Tourette syndrome (TS) than in the general population. Similarities exist between ASD and TS clinically, which suggests a potential relationship between the two conditions. The purpose of this study was to explore the occurrence of autism-related features in ASD and TS, focusing on areas of overlap and difference. This study examined the nature and extent of autistic traits as measured by the Social Communication Questionnaire (SCQ) in a sample with a diagnosis of TS, a sample diagnosed to have ASD, and a normative general population sample. The TS sample had significantly higher mean SCQ scores than the general population, but generally lower scores than the ASD sample. The group differences in mean SCQ scores between the TS and ASD sample were significant except in the domain of restricted repetitive behaviours (RRB). This suggests that ASD traits occur commonly in the TS population, with a significant overlap in certain clinical features. This was especially the case for complex movements or repetitive behaviours, which may represent either: i) a shared phenotype which is subclinical, ii) a phenocopy where some clinical symptoms mimic each other, or iii) a co-morbidity. Awareness of this association can be useful in identifying these symptoms as part of the comprehensive assessment of TS and addressing these to improve the overall clinical outcomes in these patients.
Co-Design of a Neurodevelopment Assessment Scale: A Study Protocol
Neurodevelopmental disorders are a heterogeneous group of conditions with overlapping symptomatology and fluctuating developmental trajectories that transcend current diagnostic categorisation. There is a need for validated screening instruments which dimensionally assess symptomatology from a holistic, transdiagnostic perspective. The primary aim is to co-design a Neurodevelopment Assessment Scale (NAS), a user-friendly transdiagnostic assessment inventory that systematically screens for all signs and symptoms commonly encountered in neurodevelopmental disorders. Our first objective is to undertake development of this tool, utilising co-design principles in partnership with stakeholders, including both those with lived experience of neurodevelopmental disorders and service providers. Our second objective is to evaluate the face validity, as well as the perceived utility, user-friendliness, suitability, and acceptability (i.e., ‘social validity’), of the NAS from the perspective of parents/caregivers and adults with neurodevelopmental disorders, clinicians, and service providers. Our third objective is to ascertain the psychometric properties of the NAS, including content validity and convergent validity. The NAS will provide an efficient transdiagnostic tool for evaluating all relevant signs, symptoms, and the dimensional constructs that underpin neurodevelopmental presentations. It is anticipated that this will maximise outcomes by enabling the delivery of personalised care tailored to an individual’s unique profile in a holistic and efficient manner.