Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study / Eva BILLSTEDT in Autism, 15-1 (January 2011)  

Public ISBD [article]  inAutism > 15-1 (January 2011) . - p.7-20 Titre : Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study Type de document : texte imprimé Auteurs : Eva BILLSTEDT, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur Année de publication : 2011 Article en page(s) : p.7-20 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for study at the time of follow-up (13—22 years after original diagnosis). A newly constructed scale for rating ‘autism-friendly environment’/quality of life was used alongside a structured parent/carer interview assessing current occupation, educational history, services provided, accommodation type, and recreational activities. The majority of the group with autism remained dependent on parents/caregivers for support in education, accommodation and occupational situations. In spite of this, the estimation of the study group’s general quality of life was encouragingly positive. Nevertheless, there was an obvious need for improvements in the areas of occupation and recreational activities. Future studies need to look in more depth at the concept of an autism-friendly environment and develop more detailed quality of life assessment tools relevant for people in the autism spectrum. En ligne : http://dx.doi.org/10.1177/1362361309346066 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=117 [article] Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study [texte imprimé] / Eva BILLSTEDT, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur . - 2011 . - p.7-20. Langues : Anglais (eng) in Autism > 15-1 (January 2011) . - p.7-20 Index. décimale : PER Périodiques Résumé : The present study is a long-term prospective follow-up study of a population-based cohort of 120 individuals diagnosed with autism in childhood, followed into late adolescence/early adulthood. Specific aims of the study were to attempt to measure and study social aspects/quality of life in those 108 individuals with autism alive and available for study at the time of follow-up (13—22 years after original diagnosis). A newly constructed scale for rating ‘autism-friendly environment’/quality of life was used alongside a structured parent/carer interview assessing current occupation, educational history, services provided, accommodation type, and recreational activities. The majority of the group with autism remained dependent on parents/caregivers for support in education, accommodation and occupational situations. In spite of this, the estimation of the study group’s general quality of life was encouragingly positive. Nevertheless, there was an obvious need for improvements in the areas of occupation and recreational activities. Future studies need to look in more depth at the concept of an autism-friendly environment and develop more detailed quality of life assessment tools relevant for people in the autism spectrum. En ligne : http://dx.doi.org/10.1177/1362361309346066 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=117

Aspects of Sexuality in Adolescents and Adults Diagnosed with Autism Spectrum Disorders in Childhood / Lucrecia Cabral FERNANDES in Journal of Autism and Developmental Disorders, 46-9 (September 2016)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 46-9 (September 2016) . - p.3155-3165 Titre : Aspects of Sexuality in Adolescents and Adults Diagnosed with Autism Spectrum Disorders in Childhood Type de document : texte imprimé Auteurs : Lucrecia Cabral FERNANDES, Auteur ; I. Carina GILLBERG, Auteur ; Mats CEDERLUND, Auteur ; Bibbi HAGBERG, Auteur ; Christopher GILLBERG, Auteur ; Eva BILLSTEDT, Auteur Article en page(s) : p.3155-3165 Langues : Anglais (eng) Mots-clés : Autism spectrum disorders  Asperger syndrome  Autistic disorder  Sexuality  Paraphilia Index. décimale : PER Périodiques Résumé : The literature concerning sexuality in autism spectrum disorders (ASDs) is limited regarding inappropriate sexual behaviours and paraphilias and its relation to age, verbal ability, symptom severity, intellectual ability, or adaptive functioning. A cohort of 184 adolescents and young adults (ages 15–39 years) with ASD diagnosed in childhood, including both low and high functioning individuals, was examined. The large majority were found to have a sexual interest and showed interest towards the opposite sex. Inappropriate sexual behaviours and paraphilias were reported for about a fourth of the individuals. No relationships were found between inappropriate sexual behaviours and any of the background variables listed above. However, associations were found between paraphilias and ASD symptom severity, intellectual ability, and adaptive functioning. En ligne : http://dx.doi.org/10.1007/s10803-016-2855-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=292 [article] Aspects of Sexuality in Adolescents and Adults Diagnosed with Autism Spectrum Disorders in Childhood [texte imprimé] / Lucrecia Cabral FERNANDES, Auteur ; I. Carina GILLBERG, Auteur ; Mats CEDERLUND, Auteur ; Bibbi HAGBERG, Auteur ; Christopher GILLBERG, Auteur ; Eva BILLSTEDT, Auteur . - p.3155-3165. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 46-9 (September 2016) . - p.3155-3165 Mots-clés : Autism spectrum disorders  Asperger syndrome  Autistic disorder  Sexuality  Paraphilia Index. décimale : PER Périodiques Résumé : The literature concerning sexuality in autism spectrum disorders (ASDs) is limited regarding inappropriate sexual behaviours and paraphilias and its relation to age, verbal ability, symptom severity, intellectual ability, or adaptive functioning. A cohort of 184 adolescents and young adults (ages 15–39 years) with ASD diagnosed in childhood, including both low and high functioning individuals, was examined. The large majority were found to have a sexual interest and showed interest towards the opposite sex. Inappropriate sexual behaviours and paraphilias were reported for about a fourth of the individuals. No relationships were found between inappropriate sexual behaviours and any of the background variables listed above. However, associations were found between paraphilias and ASD symptom severity, intellectual ability, and adaptive functioning. En ligne : http://dx.doi.org/10.1007/s10803-016-2855-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=292

Asperger Syndrome and Autism: A Comparative Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis / Mats CEDERLUND in Journal of Autism and Developmental Disorders, 38-1 (January 2008)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 38-1 (January 2008) . - p.72-85 Titre : Asperger Syndrome and Autism: A Comparative Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis Type de document : texte imprimé Auteurs : Mats CEDERLUND, Auteur ; Eva BILLSTEDT, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur ; Bibbi HAGBERG, Auteur Année de publication : 2008 Article en page(s) : p.72-85 Langues : Anglais (eng) Mots-clés : Asperger-syndrome Autism Follow-up Intellectual-ability Outcome DISCO Index. décimale : PER Périodiques Résumé : Prospective follow-up study of 70 males with Asperger syndrome (AS), and 70 males with autism more than 5 years after original diagnosis. Instruments used at follow-up included overall clinical assessment, the Diagnostic Interview for Social and Communication Disorders, Wechsler Intelligence Scales, Vineland Adaptive Behavior Scales, and Global Assessment of Functioning Scale. Specific outcome criteria were used. Outcome in AS was good in 27% of cases. However, 26% had a very restricted life, with no occupation/activity and no friends. Outcome in the autism group was significantly worse. Males with AS had worse outcomes than expected given normal to high IQ. However, outcome was considerably better than for the comparison group of individuals with autism. En ligne : http://dx.doi.org/10.1007/s10803-007-0364-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=315 [article] Asperger Syndrome and Autism: A Comparative Longitudinal Follow-Up Study More than 5 Years after Original Diagnosis [texte imprimé] / Mats CEDERLUND, Auteur ; Eva BILLSTEDT, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur ; Bibbi HAGBERG, Auteur . - 2008 . - p.72-85. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 38-1 (January 2008) . - p.72-85 Mots-clés : Asperger-syndrome Autism Follow-up Intellectual-ability Outcome DISCO Index. décimale : PER Périodiques Résumé : Prospective follow-up study of 70 males with Asperger syndrome (AS), and 70 males with autism more than 5 years after original diagnosis. Instruments used at follow-up included overall clinical assessment, the Diagnostic Interview for Social and Communication Disorders, Wechsler Intelligence Scales, Vineland Adaptive Behavior Scales, and Global Assessment of Functioning Scale. Specific outcome criteria were used. Outcome in AS was good in 27% of cases. However, 26% had a very restricted life, with no occupation/activity and no friends. Outcome in the autism group was significantly worse. Males with AS had worse outcomes than expected given normal to high IQ. However, outcome was considerably better than for the comparison group of individuals with autism. En ligne : http://dx.doi.org/10.1007/s10803-007-0364-6 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=315

Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity / Adam HELLES in Autism, 21-4 (May 2017)  

Public ISBD [article]  inAutism > 21-4 (May 2017) . - p.458-469 Titre : Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity Type de document : texte imprimé Auteurs : Adam HELLES, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur ; Eva BILLSTEDT, Auteur Article en page(s) : p.458-469 Langues : Anglais (eng) Mots-clés : adults  autism spectrum disorders  development  diagnosis  psychiatric comorbidity  quality of life Index. décimale : PER Périodiques Résumé : This study examined objective quality of life (work, academic success, living situation, relationships, support system) and subjective quality of life (Sense of Coherence and Short-Form Health Survey-36) in an adult sample of males (n = 50, mean age: 30 years) with Asperger syndrome diagnosed in childhood and followed prospectively over two decades. The association between long-term diagnostic stability of an autism spectrum disorder and/or comorbid psychiatric disorders with quality of life was also examined. The results showed great variability as regards quality of life. The subsample that no longer fulfilled an autism spectrum disorder had full-time jobs or studies (10/11), independent living (100%), and reported having two or more friends (100%). In the stable autism spectrum disorder group, 41% had full-time job or studies, 51% lived independently, and 33% reported two or more friends, and a significant minority had specialized employments, lived with support from the government, or had no friends. Academic success was positively correlated with IQ. A majority of the total group scored average Sense of Coherence scores, and the mean for Short-Form Health Survey-36 was above average regarding psychical health and below average regarding mental health. Stability of autism spectrum disorder diagnosis was associated with objective but not subjective quality of life, while psychiatric comorbidity was associated with subjective but not objective quality of life. En ligne : http://dx.doi.org/10.1177/1362361316650090 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305 [article] Asperger syndrome in males over two decades: Quality of life in relation to diagnostic stability and psychiatric comorbidity [texte imprimé] / Adam HELLES, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur ; Eva BILLSTEDT, Auteur . - p.458-469. Langues : Anglais (eng) in Autism > 21-4 (May 2017) . - p.458-469 Mots-clés : adults  autism spectrum disorders  development  diagnosis  psychiatric comorbidity  quality of life Index. décimale : PER Périodiques Résumé : This study examined objective quality of life (work, academic success, living situation, relationships, support system) and subjective quality of life (Sense of Coherence and Short-Form Health Survey-36) in an adult sample of males (n = 50, mean age: 30 years) with Asperger syndrome diagnosed in childhood and followed prospectively over two decades. The association between long-term diagnostic stability of an autism spectrum disorder and/or comorbid psychiatric disorders with quality of life was also examined. The results showed great variability as regards quality of life. The subsample that no longer fulfilled an autism spectrum disorder had full-time jobs or studies (10/11), independent living (100%), and reported having two or more friends (100%). In the stable autism spectrum disorder group, 41% had full-time job or studies, 51% lived independently, and 33% reported two or more friends, and a significant minority had specialized employments, lived with support from the government, or had no friends. Academic success was positively correlated with IQ. A majority of the total group scored average Sense of Coherence scores, and the mean for Short-Form Health Survey-36 was above average regarding psychical health and below average regarding mental health. Stability of autism spectrum disorder diagnosis was associated with objective but not subjective quality of life, while psychiatric comorbidity was associated with subjective but not objective quality of life. En ligne : http://dx.doi.org/10.1177/1362361316650090 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=305

Asperger syndrome in males over two decades: stability and predictors of diagnosis / Adam HELLES in Journal of Child Psychology and Psychiatry, 56-6 (June 2015)  

Public ISBD [article]  inJournal of Child Psychology and Psychiatry > 56-6 (June 2015) . - p.711-718 Titre : Asperger syndrome in males over two decades: stability and predictors of diagnosis Type de document : texte imprimé Auteurs : Adam HELLES, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur ; Eva BILLSTEDT, Auteur Article en page(s) : p.711-718 Langues : Anglais (eng) Mots-clés : Asperger syndrome  diagnostic stability  autism spectrum disorder  pervasive developmental disorder  males  longitudinal study Index. décimale : PER Périodiques Résumé : Objective To examine the diagnostic stability of a childhood diagnosis of Asperger Syndrome (AS) into adulthood in a prospective longitudinal study, and identify the predictors of stability. Methods One hundred males with AS diagnosed in childhood (T0) according to Gillberg's AS criteria, were followed up prospectively into adulthood over an average of 19 years (range 13–26 years). Fifty males (mean age 30 years) participated in this second follow-up (T2) of the cohort. Seventy-six had participated in a previous follow-up (T1) at mean age 22 years (47 participated in both follow-ups). Diagnosis at T2 was assessed using three sets of diagnostic criteria (Gillberg's AS criteria, DSM-IV Pervasive Developmental Disorder (PDD) and DSM-5 Autism Spectrum Disorder (ASD) criteria) and compared to previous assessments. Background predictors of diagnostic stability were analyzed. General functioning at T2 was assessed and compared to T1. Results There was a decline in the stability of AS diagnosis over time, the rate dropping from 82% at T1 to 44% at T2, when using the Gillberg criteria. There was also a significant decrease in the rate of cases fulfilling any PDD diagnosis according to the DSM-IV, from 91% at T1 to 76% at T2 in the 47 cases followed up twice. Severity of autism spectrum symptoms at T1 was the main predictor of diagnostic stability at T2. Twenty percent of those meeting criteria for a PDD diagnosis according to DSM-IV, did not meet DSM-5 ASD criteria although they had marked difficulties in everyday life. Conclusion Asperger Syndrome, when considered as an ASD/PDD diagnosis, was fairly stable into adulthood, but there was a significant increase over time in cases no longer meeting criteria for an ASD diagnosis according to the DSM-IV, or AS according to the Gillberg criteria. Cases with a stable diagnosis showed significantly more core ASD symptoms in adolescence/young adulthood. En ligne : http://dx.doi.org/10.1111/jcpp.12334 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=260 [article] Asperger syndrome in males over two decades: stability and predictors of diagnosis [texte imprimé] / Adam HELLES, Auteur ; I. Carina GILLBERG, Auteur ; Christopher GILLBERG, Auteur ; Eva BILLSTEDT, Auteur . - p.711-718. Langues : Anglais (eng) in Journal of Child Psychology and Psychiatry > 56-6 (June 2015) . - p.711-718 Mots-clés : Asperger syndrome  diagnostic stability  autism spectrum disorder  pervasive developmental disorder  males  longitudinal study Index. décimale : PER Périodiques Résumé : Objective To examine the diagnostic stability of a childhood diagnosis of Asperger Syndrome (AS) into adulthood in a prospective longitudinal study, and identify the predictors of stability. Methods One hundred males with AS diagnosed in childhood (T0) according to Gillberg's AS criteria, were followed up prospectively into adulthood over an average of 19 years (range 13–26 years). Fifty males (mean age 30 years) participated in this second follow-up (T2) of the cohort. Seventy-six had participated in a previous follow-up (T1) at mean age 22 years (47 participated in both follow-ups). Diagnosis at T2 was assessed using three sets of diagnostic criteria (Gillberg's AS criteria, DSM-IV Pervasive Developmental Disorder (PDD) and DSM-5 Autism Spectrum Disorder (ASD) criteria) and compared to previous assessments. Background predictors of diagnostic stability were analyzed. General functioning at T2 was assessed and compared to T1. Results There was a decline in the stability of AS diagnosis over time, the rate dropping from 82% at T1 to 44% at T2, when using the Gillberg criteria. There was also a significant decrease in the rate of cases fulfilling any PDD diagnosis according to the DSM-IV, from 91% at T1 to 76% at T2 in the 47 cases followed up twice. Severity of autism spectrum symptoms at T1 was the main predictor of diagnostic stability at T2. Twenty percent of those meeting criteria for a PDD diagnosis according to DSM-IV, did not meet DSM-5 ASD criteria although they had marked difficulties in everyday life. Conclusion Asperger Syndrome, when considered as an ASD/PDD diagnosis, was fairly stable into adulthood, but there was a significant increase over time in cases no longer meeting criteria for an ASD diagnosis according to the DSM-IV, or AS according to the Gillberg criteria. Cases with a stable diagnosis showed significantly more core ASD symptoms in adolescence/young adulthood. En ligne : http://dx.doi.org/10.1111/jcpp.12334 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=260

Autism in adults: symptom patterns and early childhood predictors. Use of the DISCO in a community sample followed from childhood / Eva BILLSTEDT in Journal of Child Psychology and Psychiatry, 48-11 (November 2007)  

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Autism in the Faroe Islands. An Epidemiological Study / Asa ELLEFSEN in Journal of Autism and Developmental Disorders, 37-3 (March 2007)  

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Autistic Syndrome with Onset at Age 31 Years: Herpes Encephalitis as a Possible Model for Childhood Autism / I. Carina GILLBERG in Developmental Medicine & Child Neurology, 33-10 (October 1991)

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Boys with Asperger Syndrome Grow Up: Psychiatric and Neurodevelopmental Disorders 20 Years After Initial Diagnosis / I. Carina GILLBERG in Journal of Autism and Developmental Disorders, 46-1 (January 2016)  

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Children with minor neurodevelopmental disorders. III: Neurological and neurodevelopmental problems at age 10 / I. Carina GILLBERG in Developmental Medicine & Child Neurology, 27-1 (February 1985)

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Children With Preschool Minor Neurodevelopmental Disorders. Iv: Behaviour And School Achievement At Age 13 / I. Carina GILLBERG in Developmental Medicine & Child Neurology, 31-1 (February 1989)

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Children With Preschool Minor Neurodevelopmental Disorders, V: Neurodevelopmental Profiles At Age 13 / I. Carina GILLBERG in Developmental Medicine & Child Neurology, 31-1 (February 1989)

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Effects of autism spectrum disorders on outcome in teenage-onset anorexia nervosa evaluated by the Morgan-Russell outcome assessment schedule: a controlled community-based study / Søren NIELSEN in Molecular Autism, (March 2015)  

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Erratum : Autism after Adolescence: Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood / Eva BILLSTEDT in Journal of Autism and Developmental Disorders, 37-9 (October 2007)  

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Erratum to: The Prevalence of Autism Spectrum Disorders in Toddlers: A Population Study of 2-Year-Old Swedish Children / Gudrun NYGREN in Journal of Autism and Developmental Disorders, 42-7 (July 2012)  

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