Behaviours that Challenge in SATB2-associated Syndrome: Correlates of Self-injury, Aggression and Property Destruction / Lauren SHELLEY in Journal of Autism and Developmental Disorders, 54-11 (November)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-11 (November) . - p.4179-4194 Titre : Behaviours that Challenge in SATB2-associated Syndrome: Correlates of Self-injury, Aggression and Property Destruction Type de document : texte imprimé Auteurs : Lauren SHELLEY, Auteur ; Jane WAITE, Auteur ; Joanne TARVER, Auteur ; Chris OLIVER, Auteur ; Hayley CRAWFORD, Auteur ; Caroline RICHARDS, Auteur ; Stacey BISSELL, Auteur Article en page(s) : p.4179-4194 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : SATB2-associated syndrome (SAS) is a genetic syndrome characterised by intellectual disability, severe speech delay, and palatal and dental problems. Behaviours that challenge (BtC) are reported frequently; however, there is limited research on specific forms of BtC and the correlates of these behaviours. The current study explores correlates of well-defined BtC, self-injury, aggression, and property destruction, in SAS. Eighty-one parents/caregivers of individuals with SAS (53.1% male, Mage 10.12 years) completed questionnaire measures of health, behavioural, emotional, and autism characteristics. Individuals with SAS were grouped based on caregiver responses to the presence or absence of self-injury, aggression, and property destruction on the Challenging Behaviour Questionnaire. Rates of self-injury, aggression and property destruction were 42%, 77% and 49%, respectively. Between-group comparisons were conducted to compare characteristics between behaviour groups. Significantly differing characteristics were entered into separate hierarchical logistic regressions for each form of BtC. Behavioural comparisons indicated variation in the characteristics associated with each behaviour. All hierarchical logistic regression models were significant (p < .001): self-injury ( 2(5) = 38.46, R2 = 0.571), aggression ( 2(4) = 25.12, R2 = 0.414), property destruction ( 2(4) = 23.70, R2 = 0.346), explaining between 34.6% and 57.1% of the variance in behaviour presence. This is the first study to identify correlates of self-injury, aggression, and property destruction in SAS. Variability in the characteristics associated with each behaviour highlights the importance of specificity when examining BtC. Understanding correlates of specific forms of BtC has important implications for informing SAS-associated pathways to behavioural outcomes and the implementation of tailored behavioural interventions. En ligne : https://doi.org/10.1007/s10803-023-06123-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537 [article] Behaviours that Challenge in SATB2-associated Syndrome: Correlates of Self-injury, Aggression and Property Destruction [texte imprimé] / Lauren SHELLEY, Auteur ; Jane WAITE, Auteur ; Joanne TARVER, Auteur ; Chris OLIVER, Auteur ; Hayley CRAWFORD, Auteur ; Caroline RICHARDS, Auteur ; Stacey BISSELL, Auteur . - p.4179-4194. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 54-11 (November) . - p.4179-4194 Index. décimale : PER Périodiques Résumé : SATB2-associated syndrome (SAS) is a genetic syndrome characterised by intellectual disability, severe speech delay, and palatal and dental problems. Behaviours that challenge (BtC) are reported frequently; however, there is limited research on specific forms of BtC and the correlates of these behaviours. The current study explores correlates of well-defined BtC, self-injury, aggression, and property destruction, in SAS. Eighty-one parents/caregivers of individuals with SAS (53.1% male, Mage 10.12 years) completed questionnaire measures of health, behavioural, emotional, and autism characteristics. Individuals with SAS were grouped based on caregiver responses to the presence or absence of self-injury, aggression, and property destruction on the Challenging Behaviour Questionnaire. Rates of self-injury, aggression and property destruction were 42%, 77% and 49%, respectively. Between-group comparisons were conducted to compare characteristics between behaviour groups. Significantly differing characteristics were entered into separate hierarchical logistic regressions for each form of BtC. Behavioural comparisons indicated variation in the characteristics associated with each behaviour. All hierarchical logistic regression models were significant (p < .001): self-injury ( 2(5) = 38.46, R2 = 0.571), aggression ( 2(4) = 25.12, R2 = 0.414), property destruction ( 2(4) = 23.70, R2 = 0.346), explaining between 34.6% and 57.1% of the variance in behaviour presence. This is the first study to identify correlates of self-injury, aggression, and property destruction in SAS. Variability in the characteristics associated with each behaviour highlights the importance of specificity when examining BtC. Understanding correlates of specific forms of BtC has important implications for informing SAS-associated pathways to behavioural outcomes and the implementation of tailored behavioural interventions. En ligne : https://doi.org/10.1007/s10803-023-06123-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=537

A cross-syndrome cohort comparison of sleep disturbance in children with Smith-Magenis syndrome, Angelman syndrome, autism spectrum disorder and tuberous sclerosis complex / J. TRICKETT in Journal of Neurodevelopmental Disorders, 10-1 (December 2018)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 10-1 (December 2018) . - p.9 Titre : A cross-syndrome cohort comparison of sleep disturbance in children with Smith-Magenis syndrome, Angelman syndrome, autism spectrum disorder and tuberous sclerosis complex Type de document : texte imprimé Auteurs : J. TRICKETT, Auteur ; Mary HEALD, Auteur ; Chris OLIVER, Auteur ; Caroline RICHARDS, Auteur Article en page(s) : p.9 Langues : Anglais (eng) Mots-clés : Angelman syndrome  Autism spectrum disorder  Cross-group comparison  Genetic syndromes  Intellectual disability  Sleep disturbance  Smith-Magenis syndrome  Tuberous sclerosis complex Index. décimale : PER Périodiques Résumé : BACKGROUND: Sleep disturbance is common in children with neurodevelopmental disorders, with high rates identified in children with Smith-Magenis syndrome (SMS), Angelman syndrome (AS), autism spectrum disorder (ASD) and tuberous sclerosis complex (TSC). Phenotypic sleep profiles for these groups may implicate different pathways to sleep disturbance. At present, cross-group comparisons that might elucidate putative phenotypic sleep characteristics are limited by measurement differences between studies. In this study, a standardised questionnaire was administered across groups affording comparison of the prevalence and profile of sleep disturbance between groups and contrast to chronologically age-matched typically developing (TD) peers. METHODS: The modified version of Simonds and Parraga's sleep questionnaire, adapted for use in children with intellectual disabilities, was employed to assess sleep disturbance profiles in children aged 2-15 years with SMS (n = 26), AS (n = 70), ASD (n = 30), TSC (n = 20) and a TD contrast group (n = 47). Associations between sleep disturbance and age, obesity, health conditions and overactivity/impulsivity were explored for each neurodevelopmental disorder group. RESULTS: Children with SMS displayed severe night waking (81%) and early morning waking (73%). In contrast, children with ASD experienced difficulties with sleep onset (30%) and sleep maintenance (43%). Fewer children with ASD (43%) and AS (46%) experienced severe night waking compared to children with SMS (both p < .01). Higher sleep-disordered breathing scores were identified for children with SMS (p < .001) and AS (p < .001) compared to the TD group. Sleep disturbance in children with AS and TSC was associated with poorer health. Children experiencing symptoms indicative of gastro-oesophageal reflux had significantly higher sleep-disordered breathing scores in the AS, SMS and ASD groups (all p < .01). A number of associations between overactivity, impulsivity, gastro-oesophageal reflux, age and sleep disturbance were found for certain groups. CONCLUSIONS: These data reveal syndrome-specific profiles of sleep disturbance. The divergent associations between sleep parameters and person characteristics, specifically symptoms of gastro-oesophageal reflux, overactivity and impulsivity and age, implicate aetiology-specific mechanisms underpinning sleep disturbance. The differences in prevalence, severity and mechanisms implicated in sleep disturbance between groups support a syndrome-sensitive approach to assessment and treatment of sleep disturbance in children with neurodevelopmental disorders. En ligne : http://dx.doi.org/10.1186/s11689-018-9226-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=351 [article] A cross-syndrome cohort comparison of sleep disturbance in children with Smith-Magenis syndrome, Angelman syndrome, autism spectrum disorder and tuberous sclerosis complex [texte imprimé] / J. TRICKETT, Auteur ; Mary HEALD, Auteur ; Chris OLIVER, Auteur ; Caroline RICHARDS, Auteur . - p.9. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 10-1 (December 2018) . - p.9 Mots-clés : Angelman syndrome  Autism spectrum disorder  Cross-group comparison  Genetic syndromes  Intellectual disability  Sleep disturbance  Smith-Magenis syndrome  Tuberous sclerosis complex Index. décimale : PER Périodiques Résumé : BACKGROUND: Sleep disturbance is common in children with neurodevelopmental disorders, with high rates identified in children with Smith-Magenis syndrome (SMS), Angelman syndrome (AS), autism spectrum disorder (ASD) and tuberous sclerosis complex (TSC). Phenotypic sleep profiles for these groups may implicate different pathways to sleep disturbance. At present, cross-group comparisons that might elucidate putative phenotypic sleep characteristics are limited by measurement differences between studies. In this study, a standardised questionnaire was administered across groups affording comparison of the prevalence and profile of sleep disturbance between groups and contrast to chronologically age-matched typically developing (TD) peers. METHODS: The modified version of Simonds and Parraga's sleep questionnaire, adapted for use in children with intellectual disabilities, was employed to assess sleep disturbance profiles in children aged 2-15 years with SMS (n = 26), AS (n = 70), ASD (n = 30), TSC (n = 20) and a TD contrast group (n = 47). Associations between sleep disturbance and age, obesity, health conditions and overactivity/impulsivity were explored for each neurodevelopmental disorder group. RESULTS: Children with SMS displayed severe night waking (81%) and early morning waking (73%). In contrast, children with ASD experienced difficulties with sleep onset (30%) and sleep maintenance (43%). Fewer children with ASD (43%) and AS (46%) experienced severe night waking compared to children with SMS (both p < .01). Higher sleep-disordered breathing scores were identified for children with SMS (p < .001) and AS (p < .001) compared to the TD group. Sleep disturbance in children with AS and TSC was associated with poorer health. Children experiencing symptoms indicative of gastro-oesophageal reflux had significantly higher sleep-disordered breathing scores in the AS, SMS and ASD groups (all p < .01). A number of associations between overactivity, impulsivity, gastro-oesophageal reflux, age and sleep disturbance were found for certain groups. CONCLUSIONS: These data reveal syndrome-specific profiles of sleep disturbance. The divergent associations between sleep parameters and person characteristics, specifically symptoms of gastro-oesophageal reflux, overactivity and impulsivity and age, implicate aetiology-specific mechanisms underpinning sleep disturbance. The differences in prevalence, severity and mechanisms implicated in sleep disturbance between groups support a syndrome-sensitive approach to assessment and treatment of sleep disturbance in children with neurodevelopmental disorders. En ligne : http://dx.doi.org/10.1186/s11689-018-9226-0 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=351

Persistence and predictors of self-injurious behaviour in autism: a ten-year prospective cohort study / Catherine LAVERTY in Molecular Autism, 11 (2020)  

Public ISBD [article]  inMolecular Autism > 11 (2020) . - 8 p. Titre : Persistence and predictors of self-injurious behaviour in autism: a ten-year prospective cohort study Type de document : texte imprimé Auteurs : Catherine LAVERTY, Auteur ; Chris OLIVER, Auteur ; Jo MOSS, Auteur ; Lisa NELSON, Auteur ; Caroline RICHARDS, Auteur Article en page(s) : 8 p. Langues : Anglais (eng) Mots-clés : Autism  Impulsivity  Prevalence  Risk marker  Self-injury  Self-restraint Index. décimale : PER Périodiques Résumé : BACKGROUND: Self-injurious behaviours, such as head banging, hair pulling, skin picking and scratching, are common in individuals with autism. Despite high prevalence rates, there is a paucity of longitudinal research to refine models of risk and mechanism and inform service planning. In this longitudinal study, we investigated self-injury in a cohort of individuals with autism over 10 years to identify behavioural and demographic characteristics associated with persistent self-injury. METHODS: Carers of 67 individuals with autism completed questionnaires relating to the presence of self-injury and relevant risk markers at T (1) (mean [SD] age in years 13.4 [7.7]) and T (3) (mean [SD] age in years 23.9 [7.7]) 10 years later. Forty-six of these also took part at T (2) (3 years after initial participation). Analysis assessed demographic and behavioural risk markers for self-injury, as well as the predictive value of items assessed at T (1)and T (2.) RESULTS: Self-injury was persistent in 44% of individuals over the 10-year period, with behavioural characteristics of impulsivity (p < .001) and overactivity (p = .002), identified as risk markers for persistence. A predictive model of self-injury was derived from LASSO analysis, with baseline impulsivity, interest and pleasure, stereotyped behaviour, social communication and adaptive functioning predicting self-injury over 10 years. CONCLUSIONS: In this unique longitudinal investigation into the persistence of self-injury in a non-clinical sample of individuals with autism over a 10 year period, we have identified a novel, robust and stable profile of behavioural characteristics associated with persistent self-injury. Findings support an early intervention strategy targeted towards individuals identified to be at a higher risk of developing self-injurious behaviour. En ligne : http://dx.doi.org/10.1186/s13229-019-0307-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427 [article] Persistence and predictors of self-injurious behaviour in autism: a ten-year prospective cohort study [texte imprimé] / Catherine LAVERTY, Auteur ; Chris OLIVER, Auteur ; Jo MOSS, Auteur ; Lisa NELSON, Auteur ; Caroline RICHARDS, Auteur . - 8 p. Langues : Anglais (eng) in Molecular Autism > 11 (2020) . - 8 p. Mots-clés : Autism  Impulsivity  Prevalence  Risk marker  Self-injury  Self-restraint Index. décimale : PER Périodiques Résumé : BACKGROUND: Self-injurious behaviours, such as head banging, hair pulling, skin picking and scratching, are common in individuals with autism. Despite high prevalence rates, there is a paucity of longitudinal research to refine models of risk and mechanism and inform service planning. In this longitudinal study, we investigated self-injury in a cohort of individuals with autism over 10 years to identify behavioural and demographic characteristics associated with persistent self-injury. METHODS: Carers of 67 individuals with autism completed questionnaires relating to the presence of self-injury and relevant risk markers at T (1) (mean [SD] age in years 13.4 [7.7]) and T (3) (mean [SD] age in years 23.9 [7.7]) 10 years later. Forty-six of these also took part at T (2) (3 years after initial participation). Analysis assessed demographic and behavioural risk markers for self-injury, as well as the predictive value of items assessed at T (1)and T (2.) RESULTS: Self-injury was persistent in 44% of individuals over the 10-year period, with behavioural characteristics of impulsivity (p < .001) and overactivity (p = .002), identified as risk markers for persistence. A predictive model of self-injury was derived from LASSO analysis, with baseline impulsivity, interest and pleasure, stereotyped behaviour, social communication and adaptive functioning predicting self-injury over 10 years. CONCLUSIONS: In this unique longitudinal investigation into the persistence of self-injury in a non-clinical sample of individuals with autism over a 10 year period, we have identified a novel, robust and stable profile of behavioural characteristics associated with persistent self-injury. Findings support an early intervention strategy targeted towards individuals identified to be at a higher risk of developing self-injurious behaviour. En ligne : http://dx.doi.org/10.1186/s13229-019-0307-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=427

Persistence of self-injurious behaviour in autism spectrum disorder over 3 years: a prospective cohort study of risk markers / Caroline RICHARDS in Journal of Neurodevelopmental Disorders, 8-1 (December 2016)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 8-1 (December 2016) . - p.21 Titre : Persistence of self-injurious behaviour in autism spectrum disorder over 3 years: a prospective cohort study of risk markers Type de document : texte imprimé Auteurs : Caroline RICHARDS, Auteur ; Jo MOSS, Auteur ; Lisa NELSON, Auteur ; Chris OLIVER, Auteur Article en page(s) : p.21 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Hyperactivity  Impulsivity  Pain  Prevalence  Risk marker  Self-injury Index. décimale : PER Périodiques Résumé : BACKGROUND: There are few studies documenting the persistence of self-injury in individuals with autism spectrum disorder (ASD) and consequently limited data on behavioural and demographic characteristics associated with persistence. In this longitudinal study, we investigated self-injury in a cohort of individuals with ASD over 3 years to identify behavioural and demographic characteristics associated with persistence. METHODS: Carers of 67 individuals with ASD (Median age of individuals with ASD in years = 13.5, Interquartile Range = 10.00-17.00), completed questionnaires relating to the presence and topography of self-injury at T1 and three years later at T2. Analyses were conducted to evaluate the persistence of self-injury and to evaluate the behavioural and demographic characteristics associated with persistence of self-injury. RESULTS: At T2 self-injurious behaviour had persisted in 77.8 % of individuals. Behavioural correlates of being non-verbal, having lower ability and higher levels of overactivity, impulsivity and repetitive behaviour, were associated with self-injury at both time points. Risk markers of impulsivity (p = 0.021) and deficits in social interaction (p = 0.026) at T1 were associated with the persistence of self-injury over 3 years. CONCLUSIONS: Impulsivity and deficits in social interaction are associated with persistent self-injury in ASD and thus may act as behavioural risk markers. The identification of these risk markers evidences a role for behaviour dysregulation in the development and maintenance of self-injury. The findings have clinical implications for proactive intervention; these behavioural characteristics may be utilised to identify 'at risk' individuals for whom self-injury is likely to be persistent and therefore those individuals for whom early intervention may be most warranted. En ligne : http://dx.doi.org/10.1186/s11689-016-9153-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=348 [article] Persistence of self-injurious behaviour in autism spectrum disorder over 3 years: a prospective cohort study of risk markers [texte imprimé] / Caroline RICHARDS, Auteur ; Jo MOSS, Auteur ; Lisa NELSON, Auteur ; Chris OLIVER, Auteur . - p.21. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 8-1 (December 2016) . - p.21 Mots-clés : Autism spectrum disorder  Hyperactivity  Impulsivity  Pain  Prevalence  Risk marker  Self-injury Index. décimale : PER Périodiques Résumé : BACKGROUND: There are few studies documenting the persistence of self-injury in individuals with autism spectrum disorder (ASD) and consequently limited data on behavioural and demographic characteristics associated with persistence. In this longitudinal study, we investigated self-injury in a cohort of individuals with ASD over 3 years to identify behavioural and demographic characteristics associated with persistence. METHODS: Carers of 67 individuals with ASD (Median age of individuals with ASD in years = 13.5, Interquartile Range = 10.00-17.00), completed questionnaires relating to the presence and topography of self-injury at T1 and three years later at T2. Analyses were conducted to evaluate the persistence of self-injury and to evaluate the behavioural and demographic characteristics associated with persistence of self-injury. RESULTS: At T2 self-injurious behaviour had persisted in 77.8 % of individuals. Behavioural correlates of being non-verbal, having lower ability and higher levels of overactivity, impulsivity and repetitive behaviour, were associated with self-injury at both time points. Risk markers of impulsivity (p = 0.021) and deficits in social interaction (p = 0.026) at T1 were associated with the persistence of self-injury over 3 years. CONCLUSIONS: Impulsivity and deficits in social interaction are associated with persistent self-injury in ASD and thus may act as behavioural risk markers. The identification of these risk markers evidences a role for behaviour dysregulation in the development and maintenance of self-injury. The findings have clinical implications for proactive intervention; these behavioural characteristics may be utilised to identify 'at risk' individuals for whom self-injury is likely to be persistent and therefore those individuals for whom early intervention may be most warranted. En ligne : http://dx.doi.org/10.1186/s11689-016-9153-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=348

‘Picking the best of a bad bunch’: Exploring stakeholder perspectives of self-harm assessment tools for autistic adults / Victoria NEWELL in Autism, 29-11 (November 2025)  

Public ISBD [article]  inAutism > 29-11 (November 2025) . - p.2791-2803 Titre : ‘Picking the best of a bad bunch’: Exploring stakeholder perspectives of self-harm assessment tools for autistic adults Type de document : texte imprimé Auteurs : Victoria NEWELL, Auteur ; Caroline RICHARDS, Auteur ; Sarah A. CASSIDY, Auteur Article en page(s) : p.2791-2803 Langues : Anglais (eng) Mots-clés : autism  measurement  self-harm  non-suicidal self-injury  stakeholders Index. décimale : PER Périodiques Résumé : Autistic people are at greater risk of self-harm than non-autistic people, yet no tools exist specifically for assessing self-harm in this population. We therefore conducted two focus groups with autistic adults (n = 5) and professionals (n = 4) to examine their perspectives on three existing self-harm assessment tools (Non-Suicidal Self-Injury – Assessment Tool, Inventory of Statements About Self-Injury and Questionnaire for Non-Suicidal Self-Injury). Using a reflexive thematic analysis, we found one overarching theme – ‘picking the best of a bad bunch’ – where participants acknowledged some strengths of the tools, but multiple limitations outweighed these. Subthemes included cognitive considerations (e.g. complexity, length, working memory demands, introspection), missing elements (e.g. broader self-harm behaviours, functions, context, support) and challenges in conceptualising self-harm, particularly around intentionality and stimming. Participants also stressed the importance of addressing stigma, considering co-occurring conditions like attention-deficit hyperactivity disorder and intellectual disabilities and upholding a duty of care. Overall, findings show that existing self-harm assessment tools are not appropriate or acceptable for autistic adults who self-harm, indicating a clear need for a new self-harm assessment tool developed with and for autistic people.Lay abstract The perspectives of autistic adults and professionals on existing self-harm assessment toolsSelf-harm is defined as when someone intentionally hurts or poisons themselves, regardless of the reason. This can include suicide attempts as well as behaviours such as cutting, hitting or burning as a way to express or manage difficult feelings. Concerningly, autistic people are more likely to self-harm than non-autistic people, but there are currently no tools specifically designed to assess self-harm in this group. This makes it harder for researchers and service providers to identify autistic people who self-harm and offer the right support or treatment. Previous studies have suggested that three existing self-harm assessment tools could be adapted for autistic people, but it is unclear what autistic adults and professionals think about these tools. We conducted two focus groups: one with autistic adults who have self-harmed and another with professionals who work with autistic people who self-harm. Both groups felt that none of the three tools were suitable for autistic people. They explained that some questions might be harder for autistic people to answer, such as those requiring them to remember specific details or identify their emotions. They also noted the tools missed out on important aspects of the autistic experience, like managing sensory and social overload. Both groups highlighted that self-harm is complex and discussed the overlap with behaviours such as stimming (e.g. repetitive movements or sounds). They emphasised the importance of a supportive approach to self-harm that considers the role of co-occurring conditions, like attention-deficit hyperactivity disorder (ADHD) or intellectual disabilities, and ensures researchers and professionals prioritise participant safety. These findings suggest that instead of adapting existing tools, a new one should be developed specifically with and for autistic people. A tailored tool could help identify self-harm earlier and lead to better support for autistic adults. En ligne : https://dx.doi.org/10.1177/13623613251348555 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570 [article] â€˜Picking the best of a bad bunch’: Exploring stakeholder perspectives of self-harm assessment tools for autistic adults [texte imprimé] / Victoria NEWELL, Auteur ; Caroline RICHARDS, Auteur ; Sarah A. CASSIDY, Auteur . - p.2791-2803. Langues : Anglais (eng) in Autism > 29-11 (November 2025) . - p.2791-2803 Mots-clés : autism  measurement  self-harm  non-suicidal self-injury  stakeholders Index. décimale : PER Périodiques Résumé : Autistic people are at greater risk of self-harm than non-autistic people, yet no tools exist specifically for assessing self-harm in this population. We therefore conducted two focus groups with autistic adults (n = 5) and professionals (n = 4) to examine their perspectives on three existing self-harm assessment tools (Non-Suicidal Self-Injury – Assessment Tool, Inventory of Statements About Self-Injury and Questionnaire for Non-Suicidal Self-Injury). Using a reflexive thematic analysis, we found one overarching theme – ‘picking the best of a bad bunch’ – where participants acknowledged some strengths of the tools, but multiple limitations outweighed these. Subthemes included cognitive considerations (e.g. complexity, length, working memory demands, introspection), missing elements (e.g. broader self-harm behaviours, functions, context, support) and challenges in conceptualising self-harm, particularly around intentionality and stimming. Participants also stressed the importance of addressing stigma, considering co-occurring conditions like attention-deficit hyperactivity disorder and intellectual disabilities and upholding a duty of care. Overall, findings show that existing self-harm assessment tools are not appropriate or acceptable for autistic adults who self-harm, indicating a clear need for a new self-harm assessment tool developed with and for autistic people.Lay abstract The perspectives of autistic adults and professionals on existing self-harm assessment toolsSelf-harm is defined as when someone intentionally hurts or poisons themselves, regardless of the reason. This can include suicide attempts as well as behaviours such as cutting, hitting or burning as a way to express or manage difficult feelings. Concerningly, autistic people are more likely to self-harm than non-autistic people, but there are currently no tools specifically designed to assess self-harm in this group. This makes it harder for researchers and service providers to identify autistic people who self-harm and offer the right support or treatment. Previous studies have suggested that three existing self-harm assessment tools could be adapted for autistic people, but it is unclear what autistic adults and professionals think about these tools. We conducted two focus groups: one with autistic adults who have self-harmed and another with professionals who work with autistic people who self-harm. Both groups felt that none of the three tools were suitable for autistic people. They explained that some questions might be harder for autistic people to answer, such as those requiring them to remember specific details or identify their emotions. They also noted the tools missed out on important aspects of the autistic experience, like managing sensory and social overload. Both groups highlighted that self-harm is complex and discussed the overlap with behaviours such as stimming (e.g. repetitive movements or sounds). They emphasised the importance of a supportive approach to self-harm that considers the role of co-occurring conditions, like attention-deficit hyperactivity disorder (ADHD) or intellectual disabilities, and ensures researchers and professionals prioritise participant safety. These findings suggest that instead of adapting existing tools, a new one should be developed specifically with and for autistic people. A tailored tool could help identify self-harm earlier and lead to better support for autistic adults. En ligne : https://dx.doi.org/10.1177/13623613251348555 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570

Practitioner Review: Self-injurious behaviour in children with developmental delay / Chris OLIVER in Journal of Child Psychology and Psychiatry, 56-10 (October 2015)  

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Predictors of Self-Injurious Behavior and Self-Restraint in Autism Spectrum Disorder: Towards a Hypothesis of Impaired Behavioral Control / Caroline RICHARDS in Journal of Autism and Developmental Disorders, 47-3 (March 2017)  

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Prevalence and Risk-Markers of Self-Harm in Autistic Children and Adults / Lucy LICENCE in Journal of Autism and Developmental Disorders, 50-10 (October 2020)  

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Prevalence of autism spectrum disorder symptomatology and related behavioural characteristics in individuals with Down syndrome / Jo MOSS in Autism, 17-4 (July 2013)  

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Profiles of autism characteristics in thirteen genetic syndromes: a machine learning approach / Alice WELHAM ; Dawn ADAMS ; Stacey BISSELL ; Hilgo BRUINING ; Hayley CRAWFORD ; Kate EDEN ; Lisa NELSON ; Christopher OLIVER ; Laurie POWIS ; Caroline RICHARDS ; Jane WAITE ; Peter WATSON ; Hefin RHYS ; Lucy WILDE ; Kate WOODCOCK ; Joanna MOSS in Molecular Autism, 14 (2023)  

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Prospective study of autism phenomenology and the behavioural phenotype of Phelan-McDermid syndrome: comparison to fragile X syndrome, Down syndrome and idiopathic autism spectrum disorder / Caroline RICHARDS in Journal of Neurodevelopmental Disorders, 9-1 (December 2017)  

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Repetitive Behavior in Rubinstein–Taybi Syndrome: Parallels with Autism Spectrum Phenomenology / Jane WAITE in Journal of Autism and Developmental Disorders, 45-5 (May 2015)  

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Self-injury and aggression in tuberous sclerosis complex: cross syndrome comparison and associated risk markers / Kate E. EDEN in Journal of Neurodevelopmental Disorders, 6-1 (December 2014)  

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Sleep disorders in rare genetic syndromes: a meta-analysis of prevalence and profile / Georgie AGAR in Molecular Autism, 12 (2021)  

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Sleep problems in autism spectrum disorders: A comparison to sleep in typically developing children using actigraphy, diaries and questionnaires / Andrew D.R. SURTEES in Research in Autism Spectrum Disorders, 67 (November 2019)  

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