Are we getting better at identifying and diagnosing neurodivergent girls and women? Insights into sex ratios and age of diagnosis from clinical population data in Scotland / Donald MACIVER in Autism, 30-2 (February 2026)  

Public ISBD [article]  inAutism > 30-2 (February 2026) . - p.375-389 Titre : Are we getting better at identifying and diagnosing neurodivergent girls and women? Insights into sex ratios and age of diagnosis from clinical population data in Scotland Type de document : texte imprimé Auteurs : Donald MACIVER, Auteur ; Anusua SINGH ROY, Auteur ; Lorna JOHNSTON, Auteur ; Marie BOILSON, Auteur ; Eleanor CURNOW, Auteur ; Victoria JOHNSTONE-COOKE, Auteur ; Marion RUTHERFORD, Auteur Article en page(s) : p.375-389 Langues : Anglais (eng) Mots-clés : ADHD  adults  autism  diagnosis  health services  school-age children  sex differences Index. décimale : PER Périodiques Résumé : This study examined differences in referral and diagnosis based on sex recorded at birth (hereafter, ‘sex’), using case notes from 408 individuals diagnosed by 30 multidisciplinary teams across Scotland. Analyses focused on male-to-female ratios and median ages at referral and diagnosis across attention-deficit/hyperactivity disorder, autism and intellectual disability. The lifespan male-to-female ratio across all diagnoses was 1.31, varying by category and age. In autism, the male-to-female ratio was 2.21 for children under 10 years, but there were more females in adolescence (male-to-female ratio = 0.79) and adulthood (male-to-female ratio = 0.94). Across the lifespan, combining all diagnoses, females were referred later (median ages: 14.4 vs 19.7 years; p < 0.001) and diagnosed later (median ages: 15.2 vs 20.2 years; p < 0.001), indicating a 5-year delay. Among autistic children and adolescents, females were referred later (median age: 7.5 vs 10.5 years; p = 0.002) and diagnosed later (median age: 9.3 vs 11.9 years; p = 0.003). However, no significant differences were found in age of referral or diagnosis for autistic adults. Overall, the results indicate increasing balance in sex ratios with age, greater asymmetry in younger age groups, and consistent delays in referral and diagnosis ages for females.Lay abstract This article looks at how males and females are diagnosed with neurodevelopmental differences including autism, attention-deficit/hyperactivity disorder (ADHD) and intellectual disabilities. It studies the case notes of 408 people (adults and children) assessed by 30 different teams during their diagnosis process. The results show overall that more males were diagnosed with neurodevelopmental differences and that males are diagnosed at younger ages compared to females. The increased diagnosis of males compared to females is most common in younger ages, but and as people get older, the number of males and females diagnosed becomes more equal, showing that more women are coming forward for and being diagnosed, for example with autism and ADHD. This research shows that although there are increasing amounts of females diagnosed, that girls and women are still missed when they are young, with more boys gaining a diagnosis as children. It seems there is a pattern of females being diagnosed at later ages (meaning less access to support and self-understanding). The study calls for better diagnostic practices and more research to address these gender differences. En ligne : https://dx.doi.org/10.1177/13623613251383343 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579 [article] Are we getting better at identifying and diagnosing neurodivergent girls and women? Insights into sex ratios and age of diagnosis from clinical population data in Scotland [texte imprimé] / Donald MACIVER, Auteur ; Anusua SINGH ROY, Auteur ; Lorna JOHNSTON, Auteur ; Marie BOILSON, Auteur ; Eleanor CURNOW, Auteur ; Victoria JOHNSTONE-COOKE, Auteur ; Marion RUTHERFORD, Auteur . - p.375-389. Langues : Anglais (eng) in Autism > 30-2 (February 2026) . - p.375-389 Mots-clés : ADHD  adults  autism  diagnosis  health services  school-age children  sex differences Index. décimale : PER Périodiques Résumé : This study examined differences in referral and diagnosis based on sex recorded at birth (hereafter, ‘sex’), using case notes from 408 individuals diagnosed by 30 multidisciplinary teams across Scotland. Analyses focused on male-to-female ratios and median ages at referral and diagnosis across attention-deficit/hyperactivity disorder, autism and intellectual disability. The lifespan male-to-female ratio across all diagnoses was 1.31, varying by category and age. In autism, the male-to-female ratio was 2.21 for children under 10 years, but there were more females in adolescence (male-to-female ratio = 0.79) and adulthood (male-to-female ratio = 0.94). Across the lifespan, combining all diagnoses, females were referred later (median ages: 14.4 vs 19.7 years; p < 0.001) and diagnosed later (median ages: 15.2 vs 20.2 years; p < 0.001), indicating a 5-year delay. Among autistic children and adolescents, females were referred later (median age: 7.5 vs 10.5 years; p = 0.002) and diagnosed later (median age: 9.3 vs 11.9 years; p = 0.003). However, no significant differences were found in age of referral or diagnosis for autistic adults. Overall, the results indicate increasing balance in sex ratios with age, greater asymmetry in younger age groups, and consistent delays in referral and diagnosis ages for females.Lay abstract This article looks at how males and females are diagnosed with neurodevelopmental differences including autism, attention-deficit/hyperactivity disorder (ADHD) and intellectual disabilities. It studies the case notes of 408 people (adults and children) assessed by 30 different teams during their diagnosis process. The results show overall that more males were diagnosed with neurodevelopmental differences and that males are diagnosed at younger ages compared to females. The increased diagnosis of males compared to females is most common in younger ages, but and as people get older, the number of males and females diagnosed becomes more equal, showing that more women are coming forward for and being diagnosed, for example with autism and ADHD. This research shows that although there are increasing amounts of females diagnosed, that girls and women are still missed when they are young, with more boys gaining a diagnosis as children. It seems there is a pattern of females being diagnosed at later ages (meaning less access to support and self-understanding). The study calls for better diagnostic practices and more research to address these gender differences. En ligne : https://dx.doi.org/10.1177/13623613251383343 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=579

Contextual factors influencing neuro-affirming practice: Identifying what helps or hinders implementation in health and social care / Anna GRAY in Autism, 29-12 (December 2025)  

Public ISBD [article]  inAutism > 29-12 (December 2025) . - p.3111-3123 Titre : Contextual factors influencing neuro-affirming practice: Identifying what helps or hinders implementation in health and social care Type de document : texte imprimé Auteurs : Anna GRAY, Auteur ; Donald MACIVER, Auteur ; Eleanor CURNOW, Auteur ; Lorna JOHNSTON, Auteur ; Marion RUTHERFORD, Auteur Article en page(s) : p.3111-3123 Langues : Anglais (eng) Mots-clés : ADHD  adults  assessment  autism  diagnosis  health services  neurodivergent  pathway  psychoeducational support  qualitative research Index. décimale : PER Périodiques Résumé : There has been limited research to date into contextual factors hindering or supporting the successful implementation of neuro-affirming practice in support for Autistic and otherwise neurodivergent adults. We used a Realist Evaluation approach to explore key contexts affecting neuro-affirming practice. A preliminary programme theory of key aspects of support was developed. Views on current practice were sought through structured interviews with 32 senior professionals in leadership roles within Health and Social Care services in Scotland. This study identified important contexts shaping the implementation of neuro-affirming practice for adults. Results indicate widespread professional support for modifying practice to better accommodate neuro-affirming ideas, and scope to achieve this. However, some contexts, including limited resources, restrictive eligibility criteria and rigid service structures, hinder progress. Growing demand for services was often viewed as a restrictive context, but it also offered a chance to rethink conventional, one-size-fits-all models and adopt neuro-affirming approaches. The study is important in addressing a current gap in research into professional perspectives of the contexts required to develop transdiagnostic, neuro-affirming approaches and pathways for Autistic and neurodivergent adults. The insights from this study may offer transferable practice approaches, applicable across different countries with similar healthcare contexts.Lay abstract Delivery of neuro-affirming adult support pathways for Autistic and other neurodivergent adults by Health and Social Care institutions can be affected by different contexts. However, there is limited research to date into the most supportive contexts for effective neuro-affirming practice. This study aimed to explore the most beneficial contexts for neuro-affirming approaches, and barriers to this. We did this by using existing research to develop a theory about the most helpful approaches to support for Autistic adults, then gathering the views of 32 senior professionals in leadership roles within Health and Social Care services to explore supports and challenges they experience in implementing these approaches. The study identified important contexts for delivery of neuro-affirming practice and how these might be achieved. Some contexts, such as limited resources, restrictive eligibility criteria and inflexible service structures, could limit progress. However, although these were often seen as barriers, they also offered a chance to rethink one-size-fits-all models and adopt neuro-affirming approaches. This study is important in addressing a current gap in research into professional perspectives of the ways neuro-affirming approaches can be developed in practice, to support Autistic and neurodivergent adults. The insights from this study may offer transferable lessons, applicable across different regions and countries. En ligne : https://dx.doi.org/10.1177/13623613251360275 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572 [article] Contextual factors influencing neuro-affirming practice: Identifying what helps or hinders implementation in health and social care [texte imprimé] / Anna GRAY, Auteur ; Donald MACIVER, Auteur ; Eleanor CURNOW, Auteur ; Lorna JOHNSTON, Auteur ; Marion RUTHERFORD, Auteur . - p.3111-3123. Langues : Anglais (eng) in Autism > 29-12 (December 2025) . - p.3111-3123 Mots-clés : ADHD  adults  assessment  autism  diagnosis  health services  neurodivergent  pathway  psychoeducational support  qualitative research Index. décimale : PER Périodiques Résumé : There has been limited research to date into contextual factors hindering or supporting the successful implementation of neuro-affirming practice in support for Autistic and otherwise neurodivergent adults. We used a Realist Evaluation approach to explore key contexts affecting neuro-affirming practice. A preliminary programme theory of key aspects of support was developed. Views on current practice were sought through structured interviews with 32 senior professionals in leadership roles within Health and Social Care services in Scotland. This study identified important contexts shaping the implementation of neuro-affirming practice for adults. Results indicate widespread professional support for modifying practice to better accommodate neuro-affirming ideas, and scope to achieve this. However, some contexts, including limited resources, restrictive eligibility criteria and rigid service structures, hinder progress. Growing demand for services was often viewed as a restrictive context, but it also offered a chance to rethink conventional, one-size-fits-all models and adopt neuro-affirming approaches. The study is important in addressing a current gap in research into professional perspectives of the contexts required to develop transdiagnostic, neuro-affirming approaches and pathways for Autistic and neurodivergent adults. The insights from this study may offer transferable practice approaches, applicable across different countries with similar healthcare contexts.Lay abstract Delivery of neuro-affirming adult support pathways for Autistic and other neurodivergent adults by Health and Social Care institutions can be affected by different contexts. However, there is limited research to date into the most supportive contexts for effective neuro-affirming practice. This study aimed to explore the most beneficial contexts for neuro-affirming approaches, and barriers to this. We did this by using existing research to develop a theory about the most helpful approaches to support for Autistic adults, then gathering the views of 32 senior professionals in leadership roles within Health and Social Care services to explore supports and challenges they experience in implementing these approaches. The study identified important contexts for delivery of neuro-affirming practice and how these might be achieved. Some contexts, such as limited resources, restrictive eligibility criteria and inflexible service structures, could limit progress. However, although these were often seen as barriers, they also offered a chance to rethink one-size-fits-all models and adopt neuro-affirming approaches. This study is important in addressing a current gap in research into professional perspectives of the ways neuro-affirming approaches can be developed in practice, to support Autistic and neurodivergent adults. The insights from this study may offer transferable lessons, applicable across different regions and countries. En ligne : https://dx.doi.org/10.1177/13623613251360275 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=572

Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder / Marion RUTHERFORD in Autism, 20-5 (July 2016)  

Public ISBD [article]  inAutism > 20-5 (July 2016) . - p.628-634 Titre : Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder Type de document : texte imprimé Auteurs : Marion RUTHERFORD, Auteur ; Karen MCKENZIE, Auteur ; Tess JOHNSON, Auteur ; Ciara CATCHPOLE, Auteur ; Anne O'HARE, Auteur ; Iain MCCLURE, Auteur ; Kirsty FORSYTH, Auteur ; Deborah MCCARTNEY, Auteur ; Aja Louise MURRAY, Auteur Article en page(s) : p.628-634 Langues : Anglais (eng) Mots-clés : autism spectrum disorder  diagnosis  females  gender  males Index. décimale : PER Périodiques Résumé : This article reports on gender ratio, age of diagnosis and the duration of assessment procedures in autism spectrum disorder diagnosis in a national study which included all types of clinical services for children and adults. Findings are reported from a retrospective case note analysis undertaken with a representative sample of 150 Scottish children and adults recently diagnosed with autism spectrum disorder. The study reports key findings that the gender ratio in this consecutively referred cohort is lower than anticipated in some age groups and reduces with increasing age. The gender ratio in children, together with the significant difference in the mean age of referral and diagnosis for girls compared to boys, adds evidence of delayed recognition of autism spectrum disorder in younger girls. There was no significant difference in duration of assessment for males and females suggesting that delays in diagnosis of females occur prior to referral for assessment. Implications for practice and research are considered. En ligne : http://dx.doi.org/10.1177/1362361315617879 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=290 [article] Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder [texte imprimé] / Marion RUTHERFORD, Auteur ; Karen MCKENZIE, Auteur ; Tess JOHNSON, Auteur ; Ciara CATCHPOLE, Auteur ; Anne O'HARE, Auteur ; Iain MCCLURE, Auteur ; Kirsty FORSYTH, Auteur ; Deborah MCCARTNEY, Auteur ; Aja Louise MURRAY, Auteur . - p.628-634. Langues : Anglais (eng) in Autism > 20-5 (July 2016) . - p.628-634 Mots-clés : autism spectrum disorder  diagnosis  females  gender  males Index. décimale : PER Périodiques Résumé : This article reports on gender ratio, age of diagnosis and the duration of assessment procedures in autism spectrum disorder diagnosis in a national study which included all types of clinical services for children and adults. Findings are reported from a retrospective case note analysis undertaken with a representative sample of 150 Scottish children and adults recently diagnosed with autism spectrum disorder. The study reports key findings that the gender ratio in this consecutively referred cohort is lower than anticipated in some age groups and reduces with increasing age. The gender ratio in children, together with the significant difference in the mean age of referral and diagnosis for girls compared to boys, adds evidence of delayed recognition of autism spectrum disorder in younger girls. There was no significant difference in duration of assessment for males and females suggesting that delays in diagnosis of females occur prior to referral for assessment. Implications for practice and research are considered. En ligne : http://dx.doi.org/10.1177/1362361315617879 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=290

Implementation of a Practice Development Model to Reduce the Wait for Autism Spectrum Diagnosis in Adults / Marion RUTHERFORD in Journal of Autism and Developmental Disorders, 48-8 (August 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-8 (August 2018) . - p.2677-2691 Titre : Implementation of a Practice Development Model to Reduce the Wait for Autism Spectrum Diagnosis in Adults Type de document : texte imprimé Auteurs : Marion RUTHERFORD, Auteur ; Kirsty FORSYTH, Auteur ; Karen MCKENZIE, Auteur ; Iain MCCLURE, Auteur ; Aja Louise MURRAY, Auteur ; Deborah MCCARTNEY, Auteur ; Linda IRVINE, Auteur ; Anne O'HARE, Auteur Article en page(s) : p.2677-2691 Langues : Anglais (eng) Mots-clés : Asd  Adults  Diagnostic assessment  Reducing wait times  Service improvement Index. décimale : PER Périodiques Résumé : This study examined waiting times for diagnostic assessment of Autism Spectrum Disorder in 11 adult services, prior to and following the implementation of a 12 month change program. Methods to support change are reported and a multi-level modelling approach determined the effect of the change program on overall wait times. Results were statistically significant (b = - 0.25, t(136) = - 2.88, p = 0.005). The average time individuals waited for diagnosis across all services reduced from 149.4 days prior to the change program and 119.5 days after it, with an average reduction of 29.9 days overall. This innovative intervention provides a promising framework for service improvement to reduce the wait for diagnostic assessment of ASD in adults across the range of spectrum presentations. En ligne : http://dx.doi.org/10.1007/s10803-018-3501-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=367 [article] Implementation of a Practice Development Model to Reduce the Wait for Autism Spectrum Diagnosis in Adults [texte imprimé] / Marion RUTHERFORD, Auteur ; Kirsty FORSYTH, Auteur ; Karen MCKENZIE, Auteur ; Iain MCCLURE, Auteur ; Aja Louise MURRAY, Auteur ; Deborah MCCARTNEY, Auteur ; Linda IRVINE, Auteur ; Anne O'HARE, Auteur . - p.2677-2691. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-8 (August 2018) . - p.2677-2691 Mots-clés : Asd  Adults  Diagnostic assessment  Reducing wait times  Service improvement Index. décimale : PER Périodiques Résumé : This study examined waiting times for diagnostic assessment of Autism Spectrum Disorder in 11 adult services, prior to and following the implementation of a 12 month change program. Methods to support change are reported and a multi-level modelling approach determined the effect of the change program on overall wait times. Results were statistically significant (b = - 0.25, t(136) = - 2.88, p = 0.005). The average time individuals waited for diagnosis across all services reduced from 149.4 days prior to the change program and 119.5 days after it, with an average reduction of 29.9 days overall. This innovative intervention provides a promising framework for service improvement to reduce the wait for diagnostic assessment of ASD in adults across the range of spectrum presentations. En ligne : http://dx.doi.org/10.1007/s10803-018-3501-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=367

Improving Efficiency and Quality of the Children's ASD Diagnostic Pathway: Lessons Learned from Practice / Marion RUTHERFORD in Journal of Autism and Developmental Disorders, 48-5 (May 2018)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1579-1595 Titre : Improving Efficiency and Quality of the Children's ASD Diagnostic Pathway: Lessons Learned from Practice Type de document : texte imprimé Auteurs : Marion RUTHERFORD, Auteur ; M. BURNS, Auteur ; Duncan GRAY, Auteur ; Lynne BREMNER, Auteur ; Sarah CLEGG, Auteur ; Lucy RUSSELL, Auteur ; Charlie SMITH, Auteur ; Anne O'HARE, Auteur Article en page(s) : p.1579-1595 Langues : Anglais (eng) Mots-clés : Autism diagnostic assessment  Children  Pathways  Waiting times Index. décimale : PER Périodiques Résumé : The 'autism diagnosis crisis' and long waiting times for assessment are as yet unresolved, leading to undue stress and limiting access to effective support. There is therefore a significant need for evidence to support practitioners in the development of efficient services, delivering acceptable waiting times and effectively meeting guideline standards. This study reports statistically significant reductions in waiting times for autism diagnostic assessment following a children's health service improvement programme. The average wait between referral and first appointment reduced from 14.2 to 10.4 weeks (t(21) = 4.3, p < 0.05) and between referral and diagnosis shared, reduced from 270 to 122.5 days, (t(20) = 5.5, p < 0.05). The proportion of girls identified increased from 5.6 to 2.7:1. Methods reported include: local improvement action planning; evidence based pathways; systematic clinical data gathering and a training plan. This is a highly significant finding for many health services wrestling with the challenges of demand and capacity for autism diagnosis and assessment. En ligne : http://dx.doi.org/10.1007/s10803-017-3415-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355 [article] Improving Efficiency and Quality of the Children's ASD Diagnostic Pathway: Lessons Learned from Practice [texte imprimé] / Marion RUTHERFORD, Auteur ; M. BURNS, Auteur ; Duncan GRAY, Auteur ; Lynne BREMNER, Auteur ; Sarah CLEGG, Auteur ; Lucy RUSSELL, Auteur ; Charlie SMITH, Auteur ; Anne O'HARE, Auteur . - p.1579-1595. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 48-5 (May 2018) . - p.1579-1595 Mots-clés : Autism diagnostic assessment  Children  Pathways  Waiting times Index. décimale : PER Périodiques Résumé : The 'autism diagnosis crisis' and long waiting times for assessment are as yet unresolved, leading to undue stress and limiting access to effective support. There is therefore a significant need for evidence to support practitioners in the development of efficient services, delivering acceptable waiting times and effectively meeting guideline standards. This study reports statistically significant reductions in waiting times for autism diagnostic assessment following a children's health service improvement programme. The average wait between referral and first appointment reduced from 14.2 to 10.4 weeks (t(21) = 4.3, p < 0.05) and between referral and diagnosis shared, reduced from 270 to 122.5 days, (t(20) = 5.5, p < 0.05). The proportion of girls identified increased from 5.6 to 2.7:1. Methods reported include: local improvement action planning; evidence based pathways; systematic clinical data gathering and a training plan. This is a highly significant finding for many health services wrestling with the challenges of demand and capacity for autism diagnosis and assessment. En ligne : http://dx.doi.org/10.1007/s10803-017-3415-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=355

IQ Predicts Biological Motion Perception in Autism Spectrum Disorders / Marion RUTHERFORD in Journal of Autism and Developmental Disorders, 42-4 (April 2012)  

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A national study to investigate the clinical use of standardised instruments in autism spectrum disorder assessment of children and adults in Scotland / Marion RUTHERFORD in Research in Autism Spectrum Disorders, 29-30 (September–October 2016)  

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Parent focused interventions for older children or adults with ASD and parent wellbeing outcomes: A systematic review with meta-analysis / Marion RUTHERFORD in Research in Autism Spectrum Disorders, 68 (December 2019)  

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Prevalence of neurodevelopmental differences and autism in Scottish primary schools 2018-2022 / Marion RUTHERFORD ; Lorna JOHNSTON ; Anusua Singh ROY in Autism Research, 16-12 (December 2023)  

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Pupils' views on visual timetables and labels in mainstream primary classrooms / Marion RUTHERFORD in Good Autism Practice - GAP, 21-2 (October 2020)

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The Prosody–Language Relationship in Children With High-Functioning Autism / Joanne MCCANN

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The relation between practice that is consistent with NICE guideline 142 recommendations and waiting times within Autism Spectrum Disorder diagnostic services / Karen MCKENZIE in Research in Autism Spectrum Disorders, 26 (June 2016)  

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The relationship between waiting times and ‘adherence’ to the Scottish Intercollegiate Guidelines Network 98 guideline in autism spectrum disorder diagnostic services in Scotland / Karen MCKENZIE in Autism, 20-4 (May 2016)  

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Visual supports at home and in the community for individuals with autism spectrum disorders: A scoping review / Marion RUTHERFORD in Autism, 24-2 (February 2020)  

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Waiting Times and Influencing Factors in Children and Adults Undergoing Assessment for Autism, ADHD, and Other Neurodevelopmental Differences / Anusua Singh ROY ; Lorna JOHNSTON ; Marie BOILSON ; Eleanor CURNOW ; Victoria JOHNSTONE-COOKE ; Marion RUTHERFORD in Autism Research, 18-4 (April 2025)  

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