‘Adolescence kicked in . . . and you need help again’: A qualitative study of the experiences of parents of autistic teenagers with mental health difficulties or behaviours that challenge / Suzanne MUKHERJEE in Autism, 29-11 (November 2025)  

Public ISBD [article]  inAutism > 29-11 (November 2025) . - p.2691-2702 Titre : ‘Adolescence kicked in . . . and you need help again’: A qualitative study of the experiences of parents of autistic teenagers with mental health difficulties or behaviours that challenge Type de document : texte imprimé Auteurs : Suzanne MUKHERJEE, Auteur ; Bryony BERESFORD, Auteur Article en page(s) : p.2691-2702 Langues : Anglais (eng) Mots-clés : adolescents  family functioning and support  lived experience  mental health  parents  qualitative research Index. décimale : PER Périodiques Résumé : Relatively little is known about the experiences of parents of autistic teenagers, with the existing research on this life stage principally about transition. This study sought to address this gap. It focused specifically on parents of autistic teenagers with mental health difficulties and/or behaviours that challenge (MHD/BC). The study design was qualitative and used in-depth interviews to collect data. Thirty-three parents of 31 teenagers (15–19 years) living in the United Kingdom were purposively sampled and recruited from an existing research cohort. A thematic analysis was undertaken, adopting the framework method. Parents typically reported the emergence of new MHD/BC, or existing difficulties becoming more severe, during the teenage years. At the same time, they described feeling de-skilled and uncertain about how best to support their child. Many parents also referred to deteriorations in their own physical and emotional health. Very few had accessed beneficial professional support during this period. Findings add weight to the case for increasing support to parents of autistic teenagers, and the need to work preventatively to reduce the risks of MHD/BC emerging or increasing in severity during the teenage years.Lay abstract Being a teenager can be challenging for any young person, and it is during this stage of life that most mental health difficulties (MHDs) emerge. The teenage years can be even more demanding for autistic young people who are known to experience more emotional distress and MHDs than their neurotypical peers. Parents are an important source of support for most children and young people, including those who are autistic. It therefore surprising that there is very little research on the experiences of parents of autistic teenagers. Most of the research that has been carried out is specifically about leaving school or moving from children’s to adult services. The purpose of this research was to understand the experiences of parents of an autistic teenager with mental health difficulties or behaviours that challenge (MHD/BC). We interviewed 33 parents of 31 teenagers aged between 15 and 19 years. Most parents said their child experienced new or more severe MHD/BC during their teenage years. This was upsetting to witness and caused them a lot of worry. Many described not knowing how best to respond. Others said that their efforts to support their child were unsuccessful. The difficulties parents experienced had an impact on their day-to-day lives and many said their own physical and emotional health had worsened as a result. Very few parents had received help from mental health or social services. The findings highlight the importance of supporting parents of autistic teenagers, including intervening to support autistic teenagers. En ligne : https://dx.doi.org/10.1177/13623613251351040 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570 [article] â€˜Adolescence kicked in . . . and you need help again’: A qualitative study of the experiences of parents of autistic teenagers with mental health difficulties or behaviours that challenge [texte imprimé] / Suzanne MUKHERJEE, Auteur ; Bryony BERESFORD, Auteur . - p.2691-2702. Langues : Anglais (eng) in Autism > 29-11 (November 2025) . - p.2691-2702 Mots-clés : adolescents  family functioning and support  lived experience  mental health  parents  qualitative research Index. décimale : PER Périodiques Résumé : Relatively little is known about the experiences of parents of autistic teenagers, with the existing research on this life stage principally about transition. This study sought to address this gap. It focused specifically on parents of autistic teenagers with mental health difficulties and/or behaviours that challenge (MHD/BC). The study design was qualitative and used in-depth interviews to collect data. Thirty-three parents of 31 teenagers (15–19 years) living in the United Kingdom were purposively sampled and recruited from an existing research cohort. A thematic analysis was undertaken, adopting the framework method. Parents typically reported the emergence of new MHD/BC, or existing difficulties becoming more severe, during the teenage years. At the same time, they described feeling de-skilled and uncertain about how best to support their child. Many parents also referred to deteriorations in their own physical and emotional health. Very few had accessed beneficial professional support during this period. Findings add weight to the case for increasing support to parents of autistic teenagers, and the need to work preventatively to reduce the risks of MHD/BC emerging or increasing in severity during the teenage years.Lay abstract Being a teenager can be challenging for any young person, and it is during this stage of life that most mental health difficulties (MHDs) emerge. The teenage years can be even more demanding for autistic young people who are known to experience more emotional distress and MHDs than their neurotypical peers. Parents are an important source of support for most children and young people, including those who are autistic. It therefore surprising that there is very little research on the experiences of parents of autistic teenagers. Most of the research that has been carried out is specifically about leaving school or moving from children’s to adult services. The purpose of this research was to understand the experiences of parents of an autistic teenager with mental health difficulties or behaviours that challenge (MHD/BC). We interviewed 33 parents of 31 teenagers aged between 15 and 19 years. Most parents said their child experienced new or more severe MHD/BC during their teenage years. This was upsetting to witness and caused them a lot of worry. Many described not knowing how best to respond. Others said that their efforts to support their child were unsuccessful. The difficulties parents experienced had an impact on their day-to-day lives and many said their own physical and emotional health had worsened as a result. Very few parents had received help from mental health or social services. The findings highlight the importance of supporting parents of autistic teenagers, including intervening to support autistic teenagers. En ligne : https://dx.doi.org/10.1177/13623613251351040 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=570

An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties / Emese MAYHEW in Journal of Autism and Developmental Disorders, 51-4 (April 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-4 (April 2021) . - p.1093-1106 Titre : An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties Type de document : texte imprimé Auteurs : Emese MAYHEW, Auteur ; Lucy STUTTARD, Auteur ; Bryony BERESFORD, Auteur Article en page(s) : p.1093-1106 Langues : Anglais (eng) Mots-clés : Autistic adults  Confirmatory factor analysis  General health questionnaire  Psychometric properties  Rasch analysis Index. décimale : PER Périodiques Résumé : Valid and reliable tools to measure mental health are a key requirement to developing a robust evidence base on mental health difficulties and autism. There are several reasons why mental health measures developed for the neurotypical population may not be valid and reliable when used with autistic adults. Using data collected from a national evaluation of community-based, specialist autism provision in England, this study assessed the psychometric properties of the General Health Questionnaire (GHQ-12) in a population of autistic adults without learning difficulties. We examined the measure's acceptability, reliability and internal construct validity. The GHQ-12 was found to have good psychometric properties in this population. This provides first evidence that this measure can be used with autistic adults without LD. En ligne : http://dx.doi.org/10.1007/s10803-020-04604-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=445 [article] An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties [texte imprimé] / Emese MAYHEW, Auteur ; Lucy STUTTARD, Auteur ; Bryony BERESFORD, Auteur . - p.1093-1106. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-4 (April 2021) . - p.1093-1106 Mots-clés : Autistic adults  Confirmatory factor analysis  General health questionnaire  Psychometric properties  Rasch analysis Index. décimale : PER Périodiques Résumé : Valid and reliable tools to measure mental health are a key requirement to developing a robust evidence base on mental health difficulties and autism. There are several reasons why mental health measures developed for the neurotypical population may not be valid and reliable when used with autistic adults. Using data collected from a national evaluation of community-based, specialist autism provision in England, this study assessed the psychometric properties of the General Health Questionnaire (GHQ-12) in a population of autistic adults without learning difficulties. We examined the measure's acceptability, reliability and internal construct validity. The GHQ-12 was found to have good psychometric properties in this population. This provides first evidence that this measure can be used with autistic adults without LD. En ligne : http://dx.doi.org/10.1007/s10803-020-04604-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=445

An evaluation of the Cygnet parenting support programme for parents of children with autism spectrum conditions / Lucy STUTTARD in Research in Autism Spectrum Disorders, 23 (March 2016)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 23 (March 2016) . - p.166-178 Titre : An evaluation of the Cygnet parenting support programme for parents of children with autism spectrum conditions Type de document : texte imprimé Auteurs : Lucy STUTTARD, Auteur ; Bryony BERESFORD, Auteur ; Susan CLARKE, Auteur ; Jennifer BEECHAM, Auteur ; Andy MORRIS, Auteur Article en page(s) : p.166-178 Langues : Anglais (eng) Mots-clés : Autistic spectrum  Parent training  Child behaviour  Non-randomised controlled trial Index. décimale : PER Périodiques Résumé : Abstract Parents of children on the autistic spectrum often struggle to understand the condition and, related to this, manage their child’s behaviour. Cygnet is a parenting intervention which aims to help parents address these difficulties, consequently improving parenting confidence. It is widely used in the United Kingdom (UK). Despite this, there have been few evaluations. This paper reports a small-scale pragmatic evaluation of Cygnet as it was routinely delivered in two English cities. A non-randomised controlled study of outcomes for parents (and their children) was conducted. Data regarding intervention fidelity and delivery costs were also collected. Parents either attending, or waiting to attend, Cygnet were recruited (intervention group: IG, n = 35; comparator group: CG, n = 32). Parents completed standardised measures of child behaviour and parenting sense of competence pre- and post-intervention, and at three-month follow-up (matched time points for CG). Longer-term outcomes were measured for the IG. IG parents also set specific child behaviour goals. Typically, the programme was delivered as specified by the manual. Attending Cygnet was associated with significant improvements in parenting satisfaction and the specific child behaviour goals. Findings regarding other outcomes were equivocal and further evaluation is required. We conclude that Cygnet is a promising intervention for parents of children with autism in terms of, at least, some outcomes. En ligne : http://dx.doi.org/10.1016/j.rasd.2015.12.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=283 [article] An evaluation of the Cygnet parenting support programme for parents of children with autism spectrum conditions [texte imprimé] / Lucy STUTTARD, Auteur ; Bryony BERESFORD, Auteur ; Susan CLARKE, Auteur ; Jennifer BEECHAM, Auteur ; Andy MORRIS, Auteur . - p.166-178. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 23 (March 2016) . - p.166-178 Mots-clés : Autistic spectrum  Parent training  Child behaviour  Non-randomised controlled trial Index. décimale : PER Périodiques Résumé : Abstract Parents of children on the autistic spectrum often struggle to understand the condition and, related to this, manage their child’s behaviour. Cygnet is a parenting intervention which aims to help parents address these difficulties, consequently improving parenting confidence. It is widely used in the United Kingdom (UK). Despite this, there have been few evaluations. This paper reports a small-scale pragmatic evaluation of Cygnet as it was routinely delivered in two English cities. A non-randomised controlled study of outcomes for parents (and their children) was conducted. Data regarding intervention fidelity and delivery costs were also collected. Parents either attending, or waiting to attend, Cygnet were recruited (intervention group: IG, n = 35; comparator group: CG, n = 32). Parents completed standardised measures of child behaviour and parenting sense of competence pre- and post-intervention, and at three-month follow-up (matched time points for CG). Longer-term outcomes were measured for the IG. IG parents also set specific child behaviour goals. Typically, the programme was delivered as specified by the manual. Attending Cygnet was associated with significant improvements in parenting satisfaction and the specific child behaviour goals. Findings regarding other outcomes were equivocal and further evaluation is required. We conclude that Cygnet is a promising intervention for parents of children with autism in terms of, at least, some outcomes. En ligne : http://dx.doi.org/10.1016/j.rasd.2015.12.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=283

Factors influencing the mental health of autistic children and teenagers: Parents' observations and experiences / Suzanne MUKHERJEE in Autism, 27-8 (November 2023)  

Public ISBD [article]  inAutism > 27-8 (November 2023) . - p.2324-2336 Titre : Factors influencing the mental health of autistic children and teenagers: Parents' observations and experiences Type de document : texte imprimé Auteurs : Suzanne MUKHERJEE, Auteur ; Bryony BERESFORD, Auteur Article en page(s) : p.2324-2336 Mots-clés : adolescence  autism  children  mental health  parents  qualitative research  teenagers Index. décimale : PER Périodiques Résumé : The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child?s mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child?s mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers.Lay abstractAutistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child?s mental health - positively and negatively - and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child?s difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved. En ligne : http://dx.doi.org/10.1177/13623613231158959 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513 [article] Factors influencing the mental health of autistic children and teenagers: Parents' observations and experiences [texte imprimé] / Suzanne MUKHERJEE, Auteur ; Bryony BERESFORD, Auteur . - p.2324-2336. in Autism > 27-8 (November 2023) . - p.2324-2336 Mots-clés : adolescence  autism  children  mental health  parents  qualitative research  teenagers Index. décimale : PER Périodiques Résumé : The high prevalence of mental health and behaviour problems among autistic children and adults is an issue of concern to the autism community. Many studies have been undertaken to identify the factors that protect against/or increase the risk of such difficulties. However, this research is dominated by quantitative observational studies. In this study, we sought to investigate the same issue using a qualitative research approach, positioning parents as experts and eliciting their theories as to what influenced their child?s mental health from diagnosis to the late teenage years. In-depth interviews were undertaken with 33 parents (30 mothers, 3 fathers) of 31 autistic teenagers (21 males, 10 females) aged between 15 and 19 years (median 17 years) purposively sampled from an existing cohort (QUEST). Parents believed a wide range of child-centred, developmental and socio-environmental factors had played a role in their child?s mental health, alongside life events involving loss and separation. A number of these factors have received little or no research attention to date (e.g. aspects of the school environment). The findings have important implications, highlighting factors that should be given priority in future research, as well as interventions needed to support the mental health of autistic teenagers.Lay abstractAutistic people are more likely to experience mental health difficulties compared to neurotypical people. It is very important that we understand what increases the risk for mental health difficulties, and what helps to protect against them. So far, research on this for children and young people has only investigated a small number of factors and these have been chosen by researchers and clinicians. This study took a different approach in which parents' expertise in their children was recognised. Parents were asked to tell the story of their autistic teenagers' mental health from diagnosis in early childhood through to the present, and to explain the 'theories' they developed about what affected their child?s mental health - positively and negatively - and how. Parents believed a wide range of factors played a role. These include: (1) aspects of their child (e.g. their autistic traits, intelligence); (2) aspects of their surroundings (e.g. the efforts parents make to prevent and respond to their child?s difficulties, features of the school they attend, availability of social activities); (3) changes their child experienced growing up (e.g. puberty, awareness of being autistic); and (4) life events involving loss and separation. Many of the factors parents identified as important have received little or no research attention to date. The findings suggest issues that should be considered in future research and reveal ways that support for parents and autistic children and teenagers can be improved. En ligne : http://dx.doi.org/10.1177/13623613231158959 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=513

Introducing 'Predictive Parenting': A Feasibility Study of a New Group Parenting Intervention Targeting Emotional and Behavioral Difficulties in Children with Autism Spectrum Disorder / Victoria HALLETT in Journal of Autism and Developmental Disorders, 51-1 (January 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-1 (January 2021) . - p.323-333 Titre : Introducing 'Predictive Parenting': A Feasibility Study of a New Group Parenting Intervention Targeting Emotional and Behavioral Difficulties in Children with Autism Spectrum Disorder Type de document : texte imprimé Auteurs : Victoria HALLETT, Auteur ; Joanne MUELLER, Auteur ; Lauren BREESE, Auteur ; Megan HOLLETT, Auteur ; Bryony BERESFORD, Auteur ; Annie IRVINE, Auteur ; Andrew PICKLES, Auteur ; Vicky SLONIMS, Auteur ; Stephen SCOTT, Auteur ; Tony CHARMAN, Auteur ; Emily SIMONOFF, Auteur Article en page(s) : p.323-333 Langues : Anglais (eng) Mots-clés : Anxiety  Autism spectrum disorder  Behavior  Intervention  Parenting Index. décimale : PER Périodiques Résumé : Parent-mediated interventions can reduce behavioral and emotional problems in children with ASD. This report discusses the development of the first group parent intervention targeting behaviors and anxiety in children with ASD, across the spectrum of cognitive and language ability. 'Predictive Parenting' was developed from the clinical observation (and emerging evidence base) that children with ASD struggle with 'prediction' and anticipating change. It integrates well-established parenting strategies within an ASD-specific framework. The concept was co-created with patient and public involvement panels of parents and adults with ASD. A feasibility study found the programme is acceptable and accessible. Qualitative feedback from participants was largely positive, and critiques were used to inform a larger, pilot randomized controlled trial of the intervention. En ligne : http://dx.doi.org/10.1007/s10803-020-04442-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438 [article] Introducing 'Predictive Parenting': A Feasibility Study of a New Group Parenting Intervention Targeting Emotional and Behavioral Difficulties in Children with Autism Spectrum Disorder [texte imprimé] / Victoria HALLETT, Auteur ; Joanne MUELLER, Auteur ; Lauren BREESE, Auteur ; Megan HOLLETT, Auteur ; Bryony BERESFORD, Auteur ; Annie IRVINE, Auteur ; Andrew PICKLES, Auteur ; Vicky SLONIMS, Auteur ; Stephen SCOTT, Auteur ; Tony CHARMAN, Auteur ; Emily SIMONOFF, Auteur . - p.323-333. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-1 (January 2021) . - p.323-333 Mots-clés : Anxiety  Autism spectrum disorder  Behavior  Intervention  Parenting Index. décimale : PER Périodiques Résumé : Parent-mediated interventions can reduce behavioral and emotional problems in children with ASD. This report discusses the development of the first group parent intervention targeting behaviors and anxiety in children with ASD, across the spectrum of cognitive and language ability. 'Predictive Parenting' was developed from the clinical observation (and emerging evidence base) that children with ASD struggle with 'prediction' and anticipating change. It integrates well-established parenting strategies within an ASD-specific framework. The concept was co-created with patient and public involvement panels of parents and adults with ASD. A feasibility study found the programme is acceptable and accessible. Qualitative feedback from participants was largely positive, and critiques were used to inform a larger, pilot randomized controlled trial of the intervention. En ligne : http://dx.doi.org/10.1007/s10803-020-04442-2 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=438

Parents Suggest Which Indicators of Progress and Outcomes Should be Measured in Young Children with Autism Spectrum Disorder / H. MCCONACHIE in Journal of Autism and Developmental Disorders, 48-4 (April 2018)  

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