Cognitive and language skills in adults with autism: a 40-year follow-up / Patricia HOWLIN in Journal of Child Psychology and Psychiatry, 55-1 (January 2014)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 55-1 (January 2014) . - p.49-58 Titre : Cognitive and language skills in adults with autism: a 40-year follow-up Type de document : Texte imprimé et/ou numérique Auteurs : Patricia HOWLIN, Auteur ; Sarah SAVAGE, Auteur ; Philippa MOSS, Auteur ; Althea TEMPIER, Auteur ; Michael RUTTER, Auteur Article en page(s) : p.49-58 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  adulthood Index. décimale : PER Périodiques Résumé : Background It is well established that very few individuals with autism spectrum disorders (ASD) and an IQ below 70 are able to live independently as adults. However, even amongst children with an IQ in the normal range, outcome is very variable. Childhood factors that predict later stability, improvement or decline in cognitive functioning remain uncertain and, in particular, very little is known about trajectories in later adulthood. Method Changes in cognitive and language ability from childhood to adulthood were assessed in 60 individuals with autism, all of whom had an IQ in the average range as children. Mean age in childhood = 6 years (range 2–13 years); mean age in adulthood = 44 years (range 29–64 years). Trajectories of change and factors related to current cognitive abilities were explored. Results For the majority of participants (N = 45, 75%), who were testable both as children and adults, IQ remained very stable and language also improved over time. However, 15 individuals could not be assessed on standard tests as adults and their developmental level could be estimated only on the Vineland Adaptive Behavior Scales. Almost all these adults (apart from one who had suffered a major stroke) showed severe aggressive or self-injurious behaviours; none had ever developed language above a 3-year level, and seven had developed epilepsy. Conclusions For most individuals with autism who had an IQ in the average range (i.e. ?70) as children, childhood IQ proved a reliable predictor of cognitive functioning well into mid- to- later adulthood. However, a significant minority was no longer testable on standard tests as adults. Their current very low levels of functional ability were generally associated with severe behavioural disturbance and persisting and severe language impairment; 50% of these individuals had also developed epilepsy, pointing to the role of organic brain dysfunction. Implications for early intervention are discussed. En ligne : http://dx.doi.org/10.1111/jcpp.12115 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=220 [article] Cognitive and language skills in adults with autism: a 40-year follow-up [Texte imprimé et/ou numérique] / Patricia HOWLIN, Auteur ; Sarah SAVAGE, Auteur ; Philippa MOSS, Auteur ; Althea TEMPIER, Auteur ; Michael RUTTER, Auteur . - p.49-58. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 55-1 (January 2014) . - p.49-58 Mots-clés : Autism spectrum disorders  adulthood Index. décimale : PER Périodiques Résumé : Background It is well established that very few individuals with autism spectrum disorders (ASD) and an IQ below 70 are able to live independently as adults. However, even amongst children with an IQ in the normal range, outcome is very variable. Childhood factors that predict later stability, improvement or decline in cognitive functioning remain uncertain and, in particular, very little is known about trajectories in later adulthood. Method Changes in cognitive and language ability from childhood to adulthood were assessed in 60 individuals with autism, all of whom had an IQ in the average range as children. Mean age in childhood = 6 years (range 2–13 years); mean age in adulthood = 44 years (range 29–64 years). Trajectories of change and factors related to current cognitive abilities were explored. Results For the majority of participants (N = 45, 75%), who were testable both as children and adults, IQ remained very stable and language also improved over time. However, 15 individuals could not be assessed on standard tests as adults and their developmental level could be estimated only on the Vineland Adaptive Behavior Scales. Almost all these adults (apart from one who had suffered a major stroke) showed severe aggressive or self-injurious behaviours; none had ever developed language above a 3-year level, and seven had developed epilepsy. Conclusions For most individuals with autism who had an IQ in the average range (i.e. ?70) as children, childhood IQ proved a reliable predictor of cognitive functioning well into mid- to- later adulthood. However, a significant minority was no longer testable on standard tests as adults. Their current very low levels of functional ability were generally associated with severe behavioural disturbance and persisting and severe language impairment; 50% of these individuals had also developed epilepsy, pointing to the role of organic brain dysfunction. Implications for early intervention are discussed. En ligne : http://dx.doi.org/10.1111/jcpp.12115 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=220

Growing older with autism – The experiences of adult siblings of individuals with autism / Philippa MOSS in Research in Autism Spectrum Disorders, 63 (July 2019)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 63 (July 2019) . - p.42-51 Titre : Growing older with autism – The experiences of adult siblings of individuals with autism Type de document : Texte imprimé et/ou numérique Auteurs : Philippa MOSS, Auteur ; Vasiliki EIRINAKI, Auteur ; Sarah SAVAGE, Auteur ; Patricia HOWLIN, Auteur Article en page(s) : p.42-51 Langues : Anglais (eng) Mots-clés : Autism siblings  Sibling experience  Impact on siblings Index. décimale : PER Périodiques Résumé : Background Most studies of siblings of individuals with autism have involved children or adolescents. In the present study we explored the experiences of adults with a brother or sister with autism. Method As part of a larger scale, adult sibling study, 56 individuals (37 females, 19 males; mean age 40 years) were asked about their experiences of growing up with a sibling with autism and about their worries for the future. Results Most participants (77%) described positive benefits, often related to the impact on their own life or personality (e.g. making them more tolerant or caring) and to the positive characteristics of their sibling with autism. Only 14% could describe no positive aspects. The principal problems described were related to coping with behavioural difficulties (39%) and disruption to family relationships (32%) or social life (23%). There was no association between the level of negative descriptions and individual sibling characteristics, participants' social functioning or mental health. The main concerns for the future, expressed by the majority of participants, focussed on problems of finding appropriate care (77%) and the potential emotional impact on the autism siblings of loss of parents. Conclusions Most participants described a mix of positive and negative experiences but current concerns focussed predominantly on future longterm care. Many adult siblings will become increasingly responsible for ensuring the welfare of the individual with autism. Medical and other services need to recognise the importance of this role, and the need actively to involve siblings in care planning and decision-making. En ligne : https://doi.org/10.1016/j.rasd.2018.10.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=394 [article] Growing older with autism – The experiences of adult siblings of individuals with autism [Texte imprimé et/ou numérique] / Philippa MOSS, Auteur ; Vasiliki EIRINAKI, Auteur ; Sarah SAVAGE, Auteur ; Patricia HOWLIN, Auteur . - p.42-51. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 63 (July 2019) . - p.42-51 Mots-clés : Autism siblings  Sibling experience  Impact on siblings Index. décimale : PER Périodiques Résumé : Background Most studies of siblings of individuals with autism have involved children or adolescents. In the present study we explored the experiences of adults with a brother or sister with autism. Method As part of a larger scale, adult sibling study, 56 individuals (37 females, 19 males; mean age 40 years) were asked about their experiences of growing up with a sibling with autism and about their worries for the future. Results Most participants (77%) described positive benefits, often related to the impact on their own life or personality (e.g. making them more tolerant or caring) and to the positive characteristics of their sibling with autism. Only 14% could describe no positive aspects. The principal problems described were related to coping with behavioural difficulties (39%) and disruption to family relationships (32%) or social life (23%). There was no association between the level of negative descriptions and individual sibling characteristics, participants' social functioning or mental health. The main concerns for the future, expressed by the majority of participants, focussed on problems of finding appropriate care (77%) and the potential emotional impact on the autism siblings of loss of parents. Conclusions Most participants described a mix of positive and negative experiences but current concerns focussed predominantly on future longterm care. Many adult siblings will become increasingly responsible for ensuring the welfare of the individual with autism. Medical and other services need to recognise the importance of this role, and the need actively to involve siblings in care planning and decision-making. En ligne : https://doi.org/10.1016/j.rasd.2018.10.005 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=394

Outcomes in Adult Life Among Siblings of Individuals with Autism / Patricia HOWLIN in Journal of Autism and Developmental Disorders, 45-3 (March 2015)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 45-3 (March 2015) . - p.707-718 Titre : Outcomes in Adult Life Among Siblings of Individuals with Autism Type de document : Texte imprimé et/ou numérique Auteurs : Patricia HOWLIN, Auteur ; Philippa MOSS, Auteur ; Sarah SAVAGE, Auteur ; Patrick BOLTON, Auteur ; Michael RUTTER, Auteur Article en page(s) : p.707-718 Langues : Anglais (eng) Mots-clés : Autism  Siblings  Adults  Outcomes Index. décimale : PER Périodiques Résumé : Little is known about adult siblings of individuals with autism. We report on cognitive, social and mental health outcomes in 87 adult siblings (mean age 39 years). When younger all had been assessed either as being “unaffected” by autism (n = 69) or as meeting criteria for the “Broader Autism Phenotype” (BAP, n = 18). As adults, all scored within the average range on tests of intelligence, numeracy and literacy. “Unaffected” siblings were functioning well in terms of jobs, independence and social relationships. Levels of social relationships and employment were significantly lower in the BAP group; autism traits and mental health problems were significantly higher. The data suggest that the “broader autism phenotype” is a meaningful concept but more sensitive diagnostic measures are required. En ligne : http://dx.doi.org/10.1007/s10803-014-2224-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=258 [article] Outcomes in Adult Life Among Siblings of Individuals with Autism [Texte imprimé et/ou numérique] / Patricia HOWLIN, Auteur ; Philippa MOSS, Auteur ; Sarah SAVAGE, Auteur ; Patrick BOLTON, Auteur ; Michael RUTTER, Auteur . - p.707-718. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 45-3 (March 2015) . - p.707-718 Mots-clés : Autism  Siblings  Adults  Outcomes Index. décimale : PER Périodiques Résumé : Little is known about adult siblings of individuals with autism. We report on cognitive, social and mental health outcomes in 87 adult siblings (mean age 39 years). When younger all had been assessed either as being “unaffected” by autism (n = 69) or as meeting criteria for the “Broader Autism Phenotype” (BAP, n = 18). As adults, all scored within the average range on tests of intelligence, numeracy and literacy. “Unaffected” siblings were functioning well in terms of jobs, independence and social relationships. Levels of social relationships and employment were significantly lower in the BAP group; autism traits and mental health problems were significantly higher. The data suggest that the “broader autism phenotype” is a meaningful concept but more sensitive diagnostic measures are required. En ligne : http://dx.doi.org/10.1007/s10803-014-2224-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=258

Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study / Philippa MOSS in Autism, 19-7 (October 2015)  

Public ISBD [article]  inAutism > 19-7 (October 2015) . - p.832-841 Titre : Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study Type de document : Texte imprimé et/ou numérique Auteurs : Philippa MOSS, Auteur ; Patricia HOWLIN, Auteur ; Sarah SAVAGE, Auteur ; Patrick BOLTON, Auteur ; Michael RUTTER, Auteur Année de publication : 2015 Article en page(s) : p.832-841 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  mental health  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Data on psychiatric problems in adults with autism are inconsistent, with estimated rates ranging from around 25% to over 75%. We assessed difficulties related to mental health in 58 adults with autism (10 females, 48 males; mean age 44?years) whom we have followed over four decades. All were of average non-verbal intelligence quotient when diagnosed as children. Overall ratings of mental health problems were based on data from the Family History Schedule (Bolton et al., 1994). Informant reports indicated that many of the cohort (44%) had experienced no mental health problems in adulthood; 28% had experienced mild to moderate difficulties, 23% had severe and 5% very severe problems. Depression was the most commonly reported problem. Among those adults (n?=?22) able to report on their own mental state, again many (45%) reported no mental health problems, although 27% reported very severe mental health problems related to anxiety, depression and/or obsessive–compulsive symptoms. Informant ratings of poor mental health were not associated with gender, severity of autism in childhood, or child or adult intelligence quotient, but there were small correlations with overall social functioning (rho?=?0.34) and current autism severity (rho?=?0.37). The findings highlight the difficulties of assessing mental health problems in adults with autism and the need for appropriately validated measures. En ligne : http://dx.doi.org/10.1177/1362361315585916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269 [article] Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study [Texte imprimé et/ou numérique] / Philippa MOSS, Auteur ; Patricia HOWLIN, Auteur ; Sarah SAVAGE, Auteur ; Patrick BOLTON, Auteur ; Michael RUTTER, Auteur . - 2015 . - p.832-841. Langues : Anglais (eng) in Autism > 19-7 (October 2015) . - p.832-841 Mots-clés : adults  autism spectrum disorders  mental health  psychiatric comorbidity Index. décimale : PER Périodiques Résumé : Data on psychiatric problems in adults with autism are inconsistent, with estimated rates ranging from around 25% to over 75%. We assessed difficulties related to mental health in 58 adults with autism (10 females, 48 males; mean age 44?years) whom we have followed over four decades. All were of average non-verbal intelligence quotient when diagnosed as children. Overall ratings of mental health problems were based on data from the Family History Schedule (Bolton et al., 1994). Informant reports indicated that many of the cohort (44%) had experienced no mental health problems in adulthood; 28% had experienced mild to moderate difficulties, 23% had severe and 5% very severe problems. Depression was the most commonly reported problem. Among those adults (n?=?22) able to report on their own mental state, again many (45%) reported no mental health problems, although 27% reported very severe mental health problems related to anxiety, depression and/or obsessive–compulsive symptoms. Informant ratings of poor mental health were not associated with gender, severity of autism in childhood, or child or adult intelligence quotient, but there were small correlations with overall social functioning (rho?=?0.34) and current autism severity (rho?=?0.37). The findings highlight the difficulties of assessing mental health problems in adults with autism and the need for appropriately validated measures. En ligne : http://dx.doi.org/10.1177/1362361315585916 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=269

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