Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany / R. VAN KESSEL in Molecular Autism, 10 (2019)  

Public ISBD [article]  inMolecular Autism > 10 (2019) . - 43 p. Titre : Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany Type de document : Texte imprimé et/ou numérique Auteurs : R. VAN KESSEL, Auteur ; A. ROMAN-URRESTARAZU, Auteur ; A. RUIGROK, Auteur ; R. HOLT, Auteur ; M. COMMERS, Auteur ; R. A. HOEKSTRA, Auteur ; K. CZABANOWSKA, Auteur ; Carol BRAYNE, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : 43 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Introduction: In recent years, the universal right to education has been emphasised by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies relevant to special education needs and parental involvement of children with autism at an international level and in the Netherlands, Germany and Belgium. Methods: A policy path analysis was performed using a scoping review as an underlying methodological framework. This allowed for a rapid gathering of available data from which a timeline of adopted policies was derived. Results and discussion: Internationally, the universal right to education has been reinforced repeatedly and the values of the Universal Declaration of Human Rights have been reiterated with every reinforcement. Also, the additional support that a child with special education needs requires is acknowledged and measures are taken to facilitate access to any education for all children. There are slight cross-country differences between the countries under study, attributable to differences in national regulation of education. However, all countries have progressed to a state where the right to education for all children is integrated on a policy level and measures are taken to enable children with special needs to participate in education. Recently, an attempt to implement a form of inclusive education was made as a form of special needs provision. Nevertheless, nowhere has this been implemented successfully yet. Conclusion: The Universal Declaration of Human Rights was a critical juncture in international policy and created an environment where the universal right to education has been implemented for all children in the countries under study. En ligne : http://dx.doi.org/10.1186/s13229-019-0297-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 [article] Autism and family involvement in the right to education in the EU: policy mapping in the Netherlands, Belgium and Germany [Texte imprimé et/ou numérique] / R. VAN KESSEL, Auteur ; A. ROMAN-URRESTARAZU, Auteur ; A. RUIGROK, Auteur ; R. HOLT, Auteur ; M. COMMERS, Auteur ; R. A. HOEKSTRA, Auteur ; K. CZABANOWSKA, Auteur ; Carol BRAYNE, Auteur ; Simon BARON-COHEN, Auteur . - 43 p. Langues : Anglais (eng) in Molecular Autism > 10 (2019) . - 43 p. Index. décimale : PER Périodiques Résumé : Introduction: In recent years, the universal right to education has been emphasised by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies relevant to special education needs and parental involvement of children with autism at an international level and in the Netherlands, Germany and Belgium. Methods: A policy path analysis was performed using a scoping review as an underlying methodological framework. This allowed for a rapid gathering of available data from which a timeline of adopted policies was derived. Results and discussion: Internationally, the universal right to education has been reinforced repeatedly and the values of the Universal Declaration of Human Rights have been reiterated with every reinforcement. Also, the additional support that a child with special education needs requires is acknowledged and measures are taken to facilitate access to any education for all children. There are slight cross-country differences between the countries under study, attributable to differences in national regulation of education. However, all countries have progressed to a state where the right to education for all children is integrated on a policy level and measures are taken to enable children with special needs to participate in education. Recently, an attempt to implement a form of inclusive education was made as a form of special needs provision. Nevertheless, nowhere has this been implemented successfully yet. Conclusion: The Universal Declaration of Human Rights was a critical juncture in international policy and created an environment where the universal right to education has been implemented for all children in the countries under study. En ligne : http://dx.doi.org/10.1186/s13229-019-0297-x Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414

Autism and the right to education in the EU: policy mapping and scoping review of Nordic countries Denmark, Finland, and Sweden / R. VAN KESSEL in Molecular Autism, 10 (2019)  

Public ISBD [article]  inMolecular Autism > 10 (2019) . - 44 p. Titre : Autism and the right to education in the EU: policy mapping and scoping review of Nordic countries Denmark, Finland, and Sweden Type de document : Texte imprimé et/ou numérique Auteurs : R. VAN KESSEL, Auteur ; S. WALSH, Auteur ; A. N. V. RUIGROK, Auteur ; R. HOLT, Auteur ; A. YLIHERVA, Auteur ; E. KARNA, Auteur ; I. MOILANEN, Auteur ; E. HJORNE, Auteur ; S. T. JOHANSSON, Auteur ; Diana SCHENDEL, Auteur ; L. PEDERSEN, Auteur ; M. JORGENSEN, Auteur ; Carol BRAYNE, Auteur ; Simon BARON-COHEN, Auteur ; A. ROMAN-URRESTARAZU, Auteur Article en page(s) : 44 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Introduction: The universal right to education for people with disabilities has been highlighted by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies addressing the right to education and special education needs of autistic children in Denmark, Sweden, and Finland. Methods: A policy path analysis was carried out using a scoping review as an underlying framework for data gathering. Policy mapping was performed independently by both lead authors to increase reliability. Results and discussion: The values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities have been closely translated into the respective education systems of the countries under study, offering special education needs services and support in mainstream education with the aim of including as many children into mainstream education as possible. Even though the education systems are comparable, the approaches between the countries under study are slightly different. Denmark and Sweden have passed several policies specifically geared towards special education needs, while Finland incorporates this more in general education policy. Conclusion: All countries under study have incorporated the values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities in their respective education systems while emphasising the need to include as many children in the mainstream system as possible. En ligne : http://dx.doi.org/10.1186/s13229-019-0290-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414 [article] Autism and the right to education in the EU: policy mapping and scoping review of Nordic countries Denmark, Finland, and Sweden [Texte imprimé et/ou numérique] / R. VAN KESSEL, Auteur ; S. WALSH, Auteur ; A. N. V. RUIGROK, Auteur ; R. HOLT, Auteur ; A. YLIHERVA, Auteur ; E. KARNA, Auteur ; I. MOILANEN, Auteur ; E. HJORNE, Auteur ; S. T. JOHANSSON, Auteur ; Diana SCHENDEL, Auteur ; L. PEDERSEN, Auteur ; M. JORGENSEN, Auteur ; Carol BRAYNE, Auteur ; Simon BARON-COHEN, Auteur ; A. ROMAN-URRESTARAZU, Auteur . - 44 p. Langues : Anglais (eng) in Molecular Autism > 10 (2019) . - 44 p. Index. décimale : PER Périodiques Résumé : Introduction: The universal right to education for people with disabilities has been highlighted by the Universal Declaration on Human Rights and the Convention on the Rights of Persons with Disabilities. In this paper, we mapped policies addressing the right to education and special education needs of autistic children in Denmark, Sweden, and Finland. Methods: A policy path analysis was carried out using a scoping review as an underlying framework for data gathering. Policy mapping was performed independently by both lead authors to increase reliability. Results and discussion: The values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities have been closely translated into the respective education systems of the countries under study, offering special education needs services and support in mainstream education with the aim of including as many children into mainstream education as possible. Even though the education systems are comparable, the approaches between the countries under study are slightly different. Denmark and Sweden have passed several policies specifically geared towards special education needs, while Finland incorporates this more in general education policy. Conclusion: All countries under study have incorporated the values of the Universal Declaration of Human Rights and the Convention on the Rights of Persons with Disabilities in their respective education systems while emphasising the need to include as many children in the mainstream system as possible. En ligne : http://dx.doi.org/10.1186/s13229-019-0290-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=414

Autistic People?s Perinatal Experiences II: A Survey of Childbirth and Postnatal Experiences / S. HAMPTON in Journal of Autism and Developmental Disorders, 53-7 (July 2023)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 53-7 (July 2023) . - p.2749-2763 Titre : Autistic People?s Perinatal Experiences II: A Survey of Childbirth and Postnatal Experiences Type de document : Texte imprimé et/ou numérique Auteurs : S. HAMPTON, Auteur ; C. ALLISON, Auteur ; Simon BARON-COHEN, Auteur ; R. HOLT, Auteur Article en page(s) : p.2749-2763 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Qualitative accounts indicate there are sensory and communication related barriers to adequate childbirth and postnatal healthcare for autistic people. However, little quantitative work has explored the topic. This online survey study explored childbirth and postnatal experiences among 384 autistic and 492 non-autistic people. Compared with non-autistic people, autistic people were more likely to find the sensory aspects of birth overwhelming, and experienced lower satisfaction with birth-related and postnatal healthcare. Autistic people were more likely to experience postnatal depression and anxiety. The findings highlight that sensory and communication adjustments should be made to birth and postnatal healthcare for autistic people. The findings indicate the need for greater autism understanding among professionals and greater postnatal mental health support for autistic people. En ligne : https://doi.org/10.1007/s10803-022-05484-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=508 [article] Autistic People?s Perinatal Experiences II: A Survey of Childbirth and Postnatal Experiences [Texte imprimé et/ou numérique] / S. HAMPTON, Auteur ; C. ALLISON, Auteur ; Simon BARON-COHEN, Auteur ; R. HOLT, Auteur . - p.2749-2763. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 53-7 (July 2023) . - p.2749-2763 Index. décimale : PER Périodiques Résumé : Qualitative accounts indicate there are sensory and communication related barriers to adequate childbirth and postnatal healthcare for autistic people. However, little quantitative work has explored the topic. This online survey study explored childbirth and postnatal experiences among 384 autistic and 492 non-autistic people. Compared with non-autistic people, autistic people were more likely to find the sensory aspects of birth overwhelming, and experienced lower satisfaction with birth-related and postnatal healthcare. Autistic people were more likely to experience postnatal depression and anxiety. The findings highlight that sensory and communication adjustments should be made to birth and postnatal healthcare for autistic people. The findings indicate the need for greater autism understanding among professionals and greater postnatal mental health support for autistic people. En ligne : https://doi.org/10.1007/s10803-022-05484-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=508

Autistic traits in adults who have attempted suicide / G. RICHARDS in Molecular Autism, 10 (2019)  

Public ISBD [article]  inMolecular Autism > 10 (2019) . - 26p. Titre : Autistic traits in adults who have attempted suicide Type de document : Texte imprimé et/ou numérique Auteurs : G. RICHARDS, Auteur ; R. KENNY, Auteur ; S. GRIFFITHS, Auteur ; Carrie ALLISON, Auteur ; D. MOSSE, Auteur ; R. HOLT, Auteur ; R. C. O'CONNOR, Auteur ; Sarah A. CASSIDY, Auteur ; Simon BARON-COHEN, Auteur Article en page(s) : 26p. Langues : Anglais (eng) Mots-clés : Asc  Asd  Asperger syndrome  Autism  Autism spectrum  Autistic traits  Depression  Mental health  Suicidality  Suicide Index. décimale : PER Périodiques Résumé : Background: An emerging literature suggests that autistic adults are at increased risk of experiencing suicidal thoughts, making suicidal plans and attempts, and dying by suicide. However, few studies have investigated whether autistic traits are related to suicidal behaviour. The current study examined autistic traits in a sample of adults who reported at least one suicide attempt. Methods: An online questionnaire was advertised between June and September 2017 on suicide prevention websites, research databases, and social media. Participants reported whether they had ever attempted suicide (yes/no), and if so, how many times they had attempted (once/more than once). They also reported diagnosed and suspected mental health or neurodevelopmental conditions, and completed the Autism Spectrum Quotient (AQ). Two hundred forty-five adults accessed the survey; 132 reported having attempted suicide and also completed the AQ. It was hypothesised that AQ total scores and subscale scores would be higher in adults who had attempted suicide more than once compared to adults who had attempted once. These hypotheses were tested using an independent samples t test, Mann-Whitney U tests, and binary logistic regression. Results: Most participants were female (83.3%, male = 12.9%, other = 3.8%), and ages ranged from 18 to 65 (median = 36.00; IQR = 19.00). Total AQ scores, as well as communication and imagination subscale scores were significantly higher in adults who had attempted suicide more than once compared to adults who had attempted suicide once. Even after removing participants with diagnosed or suspected autism (n = 34), 40.6% had an AQ score indicative of clinical concern (>/= 26). Conclusions: The findings suggest that high levels of autistic traits may frequently be present in adults who have attempted suicide, and that AQ scores are higher in those with a history of more than one suicide attempt. It may be possible to better identify suicide risk by screening autistic adults with mental health conditions for suicidal thoughts and behaviours, and by screening people with suicidal thoughts and/or behaviours for autism. En ligne : http://dx.doi.org/10.1186/s13229-019-0274-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=402 [article] Autistic traits in adults who have attempted suicide [Texte imprimé et/ou numérique] / G. RICHARDS, Auteur ; R. KENNY, Auteur ; S. GRIFFITHS, Auteur ; Carrie ALLISON, Auteur ; D. MOSSE, Auteur ; R. HOLT, Auteur ; R. C. O'CONNOR, Auteur ; Sarah A. CASSIDY, Auteur ; Simon BARON-COHEN, Auteur . - 26p. Langues : Anglais (eng) in Molecular Autism > 10 (2019) . - 26p. Mots-clés : Asc  Asd  Asperger syndrome  Autism  Autism spectrum  Autistic traits  Depression  Mental health  Suicidality  Suicide Index. décimale : PER Périodiques Résumé : Background: An emerging literature suggests that autistic adults are at increased risk of experiencing suicidal thoughts, making suicidal plans and attempts, and dying by suicide. However, few studies have investigated whether autistic traits are related to suicidal behaviour. The current study examined autistic traits in a sample of adults who reported at least one suicide attempt. Methods: An online questionnaire was advertised between June and September 2017 on suicide prevention websites, research databases, and social media. Participants reported whether they had ever attempted suicide (yes/no), and if so, how many times they had attempted (once/more than once). They also reported diagnosed and suspected mental health or neurodevelopmental conditions, and completed the Autism Spectrum Quotient (AQ). Two hundred forty-five adults accessed the survey; 132 reported having attempted suicide and also completed the AQ. It was hypothesised that AQ total scores and subscale scores would be higher in adults who had attempted suicide more than once compared to adults who had attempted once. These hypotheses were tested using an independent samples t test, Mann-Whitney U tests, and binary logistic regression. Results: Most participants were female (83.3%, male = 12.9%, other = 3.8%), and ages ranged from 18 to 65 (median = 36.00; IQR = 19.00). Total AQ scores, as well as communication and imagination subscale scores were significantly higher in adults who had attempted suicide more than once compared to adults who had attempted suicide once. Even after removing participants with diagnosed or suspected autism (n = 34), 40.6% had an AQ score indicative of clinical concern (>/= 26). Conclusions: The findings suggest that high levels of autistic traits may frequently be present in adults who have attempted suicide, and that AQ scores are higher in those with a history of more than one suicide attempt. It may be possible to better identify suicide risk by screening autistic adults with mental health conditions for suicidal thoughts and behaviours, and by screening people with suicidal thoughts and/or behaviours for autism. En ligne : http://dx.doi.org/10.1186/s13229-019-0274-4 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=402

A family with autism and rare copy number variants disrupting the Duchenne/Becker muscular dystrophy gene DMD and TRPM3 / Alistair T. PAGNAMENTA in Journal of Neurodevelopmental Disorders, 3-2 (June 2011)  

Public ISBD [article]  inJournal of Neurodevelopmental Disorders > 3-2 (June 2011) . - p.124-31 Titre : A family with autism and rare copy number variants disrupting the Duchenne/Becker muscular dystrophy gene DMD and TRPM3 Type de document : Texte imprimé et/ou numérique Auteurs : Alistair T. PAGNAMENTA, Auteur ; R. HOLT, Auteur ; M. YUSUF, Auteur ; D. PINTO, Auteur ; K. WING, Auteur ; Catalina BETANCUR, Auteur ; Stephen SCHERER, Auteur ; E. V. VOLPI, Auteur ; A. P. MONACO, Auteur Article en page(s) : p.124-31 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a genetically complex and clinically heterogeneous neurodevelopmental disorder. A recent study by the Autism Genome Project (AGP) used 1M single-nucleotide polymorphism arrays to show that rare genic copy number variants (CNVs), possibly acting in tandem, play a significant role in the genetic aetiology of this condition. In this study, we describe the phenotypic and genomic characterisation of a multiplex autism family from the AGP study that was found to harbour a duplication of exons 31-44 of the Duchenne/Becker muscular dystrophy gene DMD and also a rare deletion involving exons 1-9 of TRPM3. Further characterisation of these extremely rare CNVs was carried out using quantitative PCR, fluorescent in situ hybridisation, long-range PCR amplification and sequencing of junction fragments. The maternal chrX:32,097,213-32,321,945 tandem duplication and paternal chr9:72,480,413-73,064,196 deletion (NCBI build 36 coordinates) were transmitted to both affected boys, potentially signifying a multi-hit mechanism. The DMD reading frame rule predicts a Becker phenotype, characterised by later onset and milder symptoms. When last evaluated, neither child had developed signs of muscular dystrophy. These data are consistent with a degree of comorbidity between autism and muscular dystrophy and suggest that genomic background as well as the position of the mutation within the DMD gene may impact on the neurological correlates of Duchenne/Becker muscular dystrophy. Finally, communicating unexpected findings such as these back to families raises a number of ethical questions, which are discussed. En ligne : http://dx.doi.org/10.1007/s11689-011-9076-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=343 [article] A family with autism and rare copy number variants disrupting the Duchenne/Becker muscular dystrophy gene DMD and TRPM3 [Texte imprimé et/ou numérique] / Alistair T. PAGNAMENTA, Auteur ; R. HOLT, Auteur ; M. YUSUF, Auteur ; D. PINTO, Auteur ; K. WING, Auteur ; Catalina BETANCUR, Auteur ; Stephen SCHERER, Auteur ; E. V. VOLPI, Auteur ; A. P. MONACO, Auteur . - p.124-31. Langues : Anglais (eng) in Journal of Neurodevelopmental Disorders > 3-2 (June 2011) . - p.124-31 Index. décimale : PER Périodiques Résumé : Autism spectrum disorder is a genetically complex and clinically heterogeneous neurodevelopmental disorder. A recent study by the Autism Genome Project (AGP) used 1M single-nucleotide polymorphism arrays to show that rare genic copy number variants (CNVs), possibly acting in tandem, play a significant role in the genetic aetiology of this condition. In this study, we describe the phenotypic and genomic characterisation of a multiplex autism family from the AGP study that was found to harbour a duplication of exons 31-44 of the Duchenne/Becker muscular dystrophy gene DMD and also a rare deletion involving exons 1-9 of TRPM3. Further characterisation of these extremely rare CNVs was carried out using quantitative PCR, fluorescent in situ hybridisation, long-range PCR amplification and sequencing of junction fragments. The maternal chrX:32,097,213-32,321,945 tandem duplication and paternal chr9:72,480,413-73,064,196 deletion (NCBI build 36 coordinates) were transmitted to both affected boys, potentially signifying a multi-hit mechanism. The DMD reading frame rule predicts a Becker phenotype, characterised by later onset and milder symptoms. When last evaluated, neither child had developed signs of muscular dystrophy. These data are consistent with a degree of comorbidity between autism and muscular dystrophy and suggest that genomic background as well as the position of the mutation within the DMD gene may impact on the neurological correlates of Duchenne/Becker muscular dystrophy. Finally, communicating unexpected findings such as these back to families raises a number of ethical questions, which are discussed. En ligne : http://dx.doi.org/10.1007/s11689-011-9076-5 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=343

Investigating the factors underlying adaptive functioning in autism in the EU-AIMS Longitudinal European Autism Project / J. TILLMANN in Autism Research, 12-4 (April 2019)  

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Maternal steroid levels and the autistic traits of the mother and infant / A. TSOMPANIDIS in Molecular Autism, 12 (2021)  

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The oxytocin receptor gene predicts brain activity during an emotion recognition task in autism / F. UZEFOVSKY in Molecular Autism, 10 (2019)  

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The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults / S. GRIFFITHS in Autism Research, 12-10 (October 2019)  

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