Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry / Kelsie A. BOULTON in Autism Research, 17-3 (March 2024)  

Public ISBD [article]  inAutism Research > 17-3 (March 2024) . - p.555-567 Titre : Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry Type de document : Texte imprimé et/ou numérique Auteurs : Kelsie A. BOULTON, Auteur ; Antoinette HODGE, Auteur ; Kelera LEVU, Auteur ; Natalie ONG, Auteur ; Natalie SILOVE, Auteur ; Adam J. GUASTELLA, Auteur Article en page(s) : p.555-567 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Families can spend years waiting for a developmental assessment. We sought to understand supports caregivers had accessed by the time of their child's first multi-disciplinary developmental assessment, the supports caregivers wanted, and the barriers caregivers reported to accessing these supports. We also sought to understand how government funding schemes (the National Disability Insurance Scheme) and sociodemographic factors influenced access to supports. Caregivers were emailed questionnaires on sociodemographic background and intervention history prior to their child's developmental assessment at a tertiary diagnostic and assessment service. Results from 202 caregivers showed most children were receiving less than 2?hours of support each week at assessment. The most common accessed supports were from general practitioners and pediatricians. Caregivers reported behavioral therapists (41%) and psychologists (29%) as the most desired but inaccessible child supports. Half of caregivers nominated a need for parenting interventions. The most frequent barriers to accessing child supports were wait lists, finance, and knowledge. Government funding improved access to the total number of services received (from 2.7 to 5.2 different services), but for disability specific services only (e.g., speech and occupational therapy). Results highlighted disparities for families without government funding, impacting certain groups (e.g., children over 7?years) and services (e.g., mental health). Socioeconomic disadvantage, parental separation, and, surprisingly, being from a non-culturally/linguistically diverse background were associated with fewer services and more barriers. Results highlight the need to facilitate access to supports for families to align with existing recommendations. En ligne : https://doi.org/10.1002/aur.3064 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=525 [article] Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry [Texte imprimé et/ou numérique] / Kelsie A. BOULTON, Auteur ; Antoinette HODGE, Auteur ; Kelera LEVU, Auteur ; Natalie ONG, Auteur ; Natalie SILOVE, Auteur ; Adam J. GUASTELLA, Auteur . - p.555-567. Langues : Anglais (eng) in Autism Research > 17-3 (March 2024) . - p.555-567 Index. décimale : PER Périodiques Résumé : Abstract Families can spend years waiting for a developmental assessment. We sought to understand supports caregivers had accessed by the time of their child's first multi-disciplinary developmental assessment, the supports caregivers wanted, and the barriers caregivers reported to accessing these supports. We also sought to understand how government funding schemes (the National Disability Insurance Scheme) and sociodemographic factors influenced access to supports. Caregivers were emailed questionnaires on sociodemographic background and intervention history prior to their child's developmental assessment at a tertiary diagnostic and assessment service. Results from 202 caregivers showed most children were receiving less than 2?hours of support each week at assessment. The most common accessed supports were from general practitioners and pediatricians. Caregivers reported behavioral therapists (41%) and psychologists (29%) as the most desired but inaccessible child supports. Half of caregivers nominated a need for parenting interventions. The most frequent barriers to accessing child supports were wait lists, finance, and knowledge. Government funding improved access to the total number of services received (from 2.7 to 5.2 different services), but for disability specific services only (e.g., speech and occupational therapy). Results highlighted disparities for families without government funding, impacting certain groups (e.g., children over 7?years) and services (e.g., mental health). Socioeconomic disadvantage, parental separation, and, surprisingly, being from a non-culturally/linguistically diverse background were associated with fewer services and more barriers. Results highlight the need to facilitate access to supports for families to align with existing recommendations. En ligne : https://doi.org/10.1002/aur.3064 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=525

Caregiver-identified strengths in children attending their first neurodevelopmental assessment: Findings from the Sydney child development research registry and development of a child strengths checklist / Lorna HANKIN ; Marie-Antoinette HODGE ; Natalie ONG ; Natalie SILOVE ; Adam J GUASTELLA in Autism, 29-7 (July 2025)  

Public ISBD [article]  inAutism > 29-7 (July 2025) . - p.1769-1781 Titre : Caregiver-identified strengths in children attending their first neurodevelopmental assessment: Findings from the Sydney child development research registry and development of a child strengths checklist Type de document : Texte imprimé et/ou numérique Auteurs : Lorna HANKIN, Auteur ; Marie-Antoinette HODGE, Auteur ; Natalie ONG, Auteur ; Natalie SILOVE, Auteur ; Adam J GUASTELLA, Auteur Article en page(s) : p.1769-1781 Langues : Anglais (eng) Mots-clés : assessment  autism spectrum disorders  neurodevelopment  ADHD  communication disorders  strengths Index. décimale : PER Périodiques Résumé : 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 Abstract 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. En ligne : https://dx.doi.org/10.1177/13623613251325287 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558 [article] Caregiver-identified strengths in children attending their first neurodevelopmental assessment: Findings from the Sydney child development research registry and development of a child strengths checklist [Texte imprimé et/ou numérique] / Lorna HANKIN, Auteur ; Marie-Antoinette HODGE, Auteur ; Natalie ONG, Auteur ; Natalie SILOVE, Auteur ; Adam J GUASTELLA, Auteur . - p.1769-1781. Langues : Anglais (eng) in Autism > 29-7 (July 2025) . - p.1769-1781 Mots-clés : assessment  autism spectrum disorders  neurodevelopment  ADHD  communication disorders  strengths Index. décimale : PER Périodiques Résumé : 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 Abstract 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. En ligne : https://dx.doi.org/10.1177/13623613251325287 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=558

Focusing on autism symptoms masks sex-specific needs of autistic children: An example from the Sydney Child Neurodevelopment Research Registry / Marie Antoinette HODGE in Autism, 29-5 (May 2025)  

Public ISBD [article]  inAutism > 29-5 (May 2025) . - p.1318-1332 Titre : Focusing on autism symptoms masks sex-specific needs of autistic children: An example from the Sydney Child Neurodevelopment Research Registry Type de document : Texte imprimé et/ou numérique Auteurs : Marie Antoinette HODGE, Auteur ; Rebecca SUTHERLAND, Auteur ; Kelsie A BOULTON, Auteur ; Sarah Jane BARACZ, Auteur ; Natalie ONG, Auteur ; Beverley BENNETT, Auteur ; Adam J GUASTELLA, Auteur ; Natalie SILOVE, Auteur Article en page(s) : p.1318-1332 Langues : Anglais (eng) Mots-clés : adaptive skills  age at diagnosis  assigned sex at birth  autism symptoms  developmental skills  intellectual ability Index. décimale : PER Périodiques Résumé : Studies have shown that there are differences between the presentations of males and females diagnosed with autism. There remains a developing understanding about how the presentation of autism differs between boys (hereafter referred to as 'assigned males at birth') and girls (assigned females at birth). This study sought to investigate the presence of sex differences in autistic children. Participants (1.11-17.97?years) attended an assessment clinic and participated in measures of intelligence/development, social/communication skills and behaviour. Adaptive skills were evaluated using a range of standardised measures, and other clinical and demographic variables were collected (e.g. age, intelligence quotient, ratio of male to female). Assigned males at birth displayed more autism characteristics and greater symptom autism severity than assigned females at birth. No significant differences were found between assigned males at birth and assigned females at birth on any measure of intelligence. Children assigned males at birth received assessments 6?months earlier than children assigned females at birth on average. Externalising behaviour problems were more evident in assigned males at birth, but statistically significant differences in adaptive skills were not apparent between assigned males at birth and assigned females at birth. This study showed assigned females at birth and assigned males at birth differ in autism symptoms and severity and age at diagnosis based on a real-world sample. It highlights the importance of balancing assessments of symptoms with assessment of adaptive function.Lay abstract Studies have shown that there is a difference between biological sex at birth in autism spectrum disorder. There remains a lack of understanding about how the symptoms of autism differ between assigned males at birth and assigned females at birth. We looked at the presence of sex differences in a large group of autistic toddlers, children and adolescents, who were seen in a large diagnosis and assessment clinic. They participated in measures of intelligence/development, social/communication skills and behaviour. Their adaptive skills were evaluated and other clinical and information were collected. Assigned males at birth displayed more autism characteristics and greater symptom autism severity than assigned females at birth. There were no statistically significant differences between assigned males at birth and assigned females at birth on any measure of intellectual assessment. Assigned females at birth showed better nonverbal performance than assigned males at birth on formal developmental assessments. Children assigned males at birth received assessments 6?months earlier than children assigned females at birth. Externalising behaviour problems were more evident in assigned males at birth. This study provides evidence to show that autistic children assigned females at birth and assigned males at birth differ in terms of autism symptoms and severity and age at diagnosis based on a sample recruited in a real-world clinic. It highlights the importance of the growing debate between balancing assessments of symptoms with assessment of adaptive function. En ligne : https://dx.doi.org/10.1177/13623613241303550 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555 [article] Focusing on autism symptoms masks sex-specific needs of autistic children: An example from the Sydney Child Neurodevelopment Research Registry [Texte imprimé et/ou numérique] / Marie Antoinette HODGE, Auteur ; Rebecca SUTHERLAND, Auteur ; Kelsie A BOULTON, Auteur ; Sarah Jane BARACZ, Auteur ; Natalie ONG, Auteur ; Beverley BENNETT, Auteur ; Adam J GUASTELLA, Auteur ; Natalie SILOVE, Auteur . - p.1318-1332. Langues : Anglais (eng) in Autism > 29-5 (May 2025) . - p.1318-1332 Mots-clés : adaptive skills  age at diagnosis  assigned sex at birth  autism symptoms  developmental skills  intellectual ability Index. décimale : PER Périodiques Résumé : Studies have shown that there are differences between the presentations of males and females diagnosed with autism. There remains a developing understanding about how the presentation of autism differs between boys (hereafter referred to as 'assigned males at birth') and girls (assigned females at birth). This study sought to investigate the presence of sex differences in autistic children. Participants (1.11-17.97?years) attended an assessment clinic and participated in measures of intelligence/development, social/communication skills and behaviour. Adaptive skills were evaluated using a range of standardised measures, and other clinical and demographic variables were collected (e.g. age, intelligence quotient, ratio of male to female). Assigned males at birth displayed more autism characteristics and greater symptom autism severity than assigned females at birth. No significant differences were found between assigned males at birth and assigned females at birth on any measure of intelligence. Children assigned males at birth received assessments 6?months earlier than children assigned females at birth on average. Externalising behaviour problems were more evident in assigned males at birth, but statistically significant differences in adaptive skills were not apparent between assigned males at birth and assigned females at birth. This study showed assigned females at birth and assigned males at birth differ in autism symptoms and severity and age at diagnosis based on a real-world sample. It highlights the importance of balancing assessments of symptoms with assessment of adaptive function.Lay abstract Studies have shown that there is a difference between biological sex at birth in autism spectrum disorder. There remains a lack of understanding about how the symptoms of autism differ between assigned males at birth and assigned females at birth. We looked at the presence of sex differences in a large group of autistic toddlers, children and adolescents, who were seen in a large diagnosis and assessment clinic. They participated in measures of intelligence/development, social/communication skills and behaviour. Their adaptive skills were evaluated and other clinical and information were collected. Assigned males at birth displayed more autism characteristics and greater symptom autism severity than assigned females at birth. There were no statistically significant differences between assigned males at birth and assigned females at birth on any measure of intellectual assessment. Assigned females at birth showed better nonverbal performance than assigned males at birth on formal developmental assessments. Children assigned males at birth received assessments 6?months earlier than children assigned females at birth. Externalising behaviour problems were more evident in assigned males at birth. This study provides evidence to show that autistic children assigned females at birth and assigned males at birth differ in terms of autism symptoms and severity and age at diagnosis based on a sample recruited in a real-world clinic. It highlights the importance of the growing debate between balancing assessments of symptoms with assessment of adaptive function. En ligne : https://dx.doi.org/10.1177/13623613241303550 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=555

Quality and accessibility of written development assessment reports provided to caregivers in a publicly funded child developmental assessment service / Martha MUNRO in Autism, 27-6 (August 2023)  

Public ISBD [article]  inAutism > 27-6 (August 2023) . - p.1764-1776 Titre : Quality and accessibility of written development assessment reports provided to caregivers in a publicly funded child developmental assessment service Type de document : Texte imprimé et/ou numérique Auteurs : Martha MUNRO, Auteur ; Kelsie A BOULTON, Auteur ; Natalie PHILLIPS, Auteur ; M Antoinette HODGE, Auteur ; Natalie ONG, Auteur ; David COGHILL, Auteur ; Natalie SILOVE, Auteur ; Adam J GUASTELLA, Auteur Article en page(s) : p.1764-1776 Langues : Anglais (eng) Mots-clés : ADHD;anxiety;autism spectrum disorders;development;diagnosis;health services Index. décimale : PER Périodiques Résumé : Despite long wait times, public paediatric developmental assessment services remain crucial for the assessment of vulnerable children, particularly those from disadvantaged backgrounds. Assessment represents a critical opportunity to guide the placement of supports to improve functioning and developmental trajectories. There is, however, a lack of research examining how multi-disciplinary assessment services conduct assessments, synthesise results and provide reports to families. This study retrospectively examined 85 reports provided to caregivers at a multi-disciplinary developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on multiple transdiagnostic needs. Recommendations provided in the reports that were related to autism diagnoses were specific and actionable, but reports rarely addressed transdiagnostic needs or comorbidities (e.g. cognitive impairments, mental health). For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than what is typically recommended. Recommendations for future practice are provided to improve the quality of reports and to better meet the needs of children and families attending developmental assessment services.Lay abstractDespite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services. En ligne : http://dx.doi.org/10.1177/13623613221145868 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509 [article] Quality and accessibility of written development assessment reports provided to caregivers in a publicly funded child developmental assessment service [Texte imprimé et/ou numérique] / Martha MUNRO, Auteur ; Kelsie A BOULTON, Auteur ; Natalie PHILLIPS, Auteur ; M Antoinette HODGE, Auteur ; Natalie ONG, Auteur ; David COGHILL, Auteur ; Natalie SILOVE, Auteur ; Adam J GUASTELLA, Auteur . - p.1764-1776. Langues : Anglais (eng) in Autism > 27-6 (August 2023) . - p.1764-1776 Mots-clés : ADHD;anxiety;autism spectrum disorders;development;diagnosis;health services Index. décimale : PER Périodiques Résumé : Despite long wait times, public paediatric developmental assessment services remain crucial for the assessment of vulnerable children, particularly those from disadvantaged backgrounds. Assessment represents a critical opportunity to guide the placement of supports to improve functioning and developmental trajectories. There is, however, a lack of research examining how multi-disciplinary assessment services conduct assessments, synthesise results and provide reports to families. This study retrospectively examined 85 reports provided to caregivers at a multi-disciplinary developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on multiple transdiagnostic needs. Recommendations provided in the reports that were related to autism diagnoses were specific and actionable, but reports rarely addressed transdiagnostic needs or comorbidities (e.g. cognitive impairments, mental health). For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than what is typically recommended. Recommendations for future practice are provided to improve the quality of reports and to better meet the needs of children and families attending developmental assessment services.Lay abstractDespite long wait times, public paediatric developmental assessment services remain crucial for assessment of children. Assessment is a critical opportunity to guide the placement of supports to improve outcomes. There is little research examining how clinical assessment services conduct their assessments, present results and write reports to families. This study examined 85 reports provided to caregivers at a developmental assessment service. Reports were evaluated for whether they (1) addressed caregiver perceived needs, (2) used available data to provide appropriate information about child needs, (3) provided recommendations that were actionable and specific to needs, (4) had appropriate readability levels and (5) followed existing autism assessment guidelines. Findings showed clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs. Recommendations related to autism diagnoses were actionable, but they rarely addressed comorbidities such as cognitive impairments or mental health. For instance, only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Reports largely followed autism assessment guidelines, but the language used was more complex for families than recommended. Recommendations for future practice are provided so that consideration may be given to how to improve the quality and effectiveness of reports for families attending services. En ligne : http://dx.doi.org/10.1177/13623613221145868 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=509

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