Pub Date : 2019-03-21DOI: 10.1108/AIA-05-2018-0018
K. Searle, L. Ellis, M. Kourti, Andrea MacLeod, Caroline Lear, C. Duckworth, David J. Irvine, H. Jones, M. King, Jessica Ling, J. Simpson
Purpose The purpose of this paper is to address the benefits of a participatory approach to autism research, demonstrating the positive effects of giving autistic project assistants (PAs) the opportunity to design and undertake a project researching the experiences of autistic university students. Design/methodology/approach A participatory approach was implemented, engaging autistic university students as research assistants. All the research team except project co-ordinators were autistic. Undergraduate autistic students developed and conducted a set of semi-structured interviews, with two autistic alumni responsible for data analysis and both scheduling and moderating focus groups. Participation in dissemination of the findings was open to all. Findings The results included in this paper reflect a portion of the overall findings, specifically regarding the participatory approach. The findings of the study indicate the perceptions of respondents being interviewed by autistic researchers in relation to their shared understanding, facilitating positive feelings and a sense of rapport in the interview process. The PAs were able to improve their research skills through the project, which contributed constructively to their CV and allowed them to feel more positive about being autistic, and specifically about being an autistic researcher. Originality/value This paper is one of the first to discuss the challenges and benefits of including autistic participant researchers at all stages of the research project, including research design, data collection, analysis and dissemination, being co-written by both project co-ordinators and autistic project researchers.
{"title":"Participatory autism research with students at a UK university: evidence from a small-scale empirical project","authors":"K. Searle, L. Ellis, M. Kourti, Andrea MacLeod, Caroline Lear, C. Duckworth, David J. Irvine, H. Jones, M. King, Jessica Ling, J. Simpson","doi":"10.1108/AIA-05-2018-0018","DOIUrl":"https://doi.org/10.1108/AIA-05-2018-0018","url":null,"abstract":"\u0000Purpose\u0000The purpose of this paper is to address the benefits of a participatory approach to autism research, demonstrating the positive effects of giving autistic project assistants (PAs) the opportunity to design and undertake a project researching the experiences of autistic university students.\u0000\u0000\u0000Design/methodology/approach\u0000A participatory approach was implemented, engaging autistic university students as research assistants. All the research team except project co-ordinators were autistic. Undergraduate autistic students developed and conducted a set of semi-structured interviews, with two autistic alumni responsible for data analysis and both scheduling and moderating focus groups. Participation in dissemination of the findings was open to all.\u0000\u0000\u0000Findings\u0000The results included in this paper reflect a portion of the overall findings, specifically regarding the participatory approach. The findings of the study indicate the perceptions of respondents being interviewed by autistic researchers in relation to their shared understanding, facilitating positive feelings and a sense of rapport in the interview process. The PAs were able to improve their research skills through the project, which contributed constructively to their CV and allowed them to feel more positive about being autistic, and specifically about being an autistic researcher.\u0000\u0000\u0000Originality/value\u0000This paper is one of the first to discuss the challenges and benefits of including autistic participant researchers at all stages of the research project, including research design, data collection, analysis and dissemination, being co-written by both project co-ordinators and autistic project researchers.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-05-2018-0018","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49194836","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-21DOI: 10.1108/AIA-09-2018-0034
N. Martin, D. Milton, J. Krupa, S. Brett, Kim Bulman, Daniel D. Callow, Fiona Copeland, Laura Cunningham, Wendy Ellis, Tina Harvey, Monika Moranska, Rebecca Roach, Seanne Wilmot
Purpose An alliance of schools and researchers formed a collaborative community of practice in order to understand and improve the sensory school environment for pupils on the autistic spectrum, and incorporate the findings into school improvement planning. The paper aims to discuss this issue. Design/methodology/approach Representatives of special and mainstream schools in South London and a team of researchers formed the project team, including an autistic researcher. The researchers and a named staff member from each of the schools met regularly over the course of 18 months in order to work on an iterative process to improve the sensory experience pupils had of the school environment. Each school completed sensory audits and observations, and was visited by members of the research team. Parents were involved via meetings with the research team and two conferences were organised to share findings. Findings Useful outcomes included: developing and sharing of good practice between schools; opportunities for parents of autistic pupils to discuss their concerns, particularly with someone with insider perspective; and exploration of creative ways to achieve pupil involvement and the idea that good autism practice has the potential to benefit all pupils. A resource pack was produced for the schools to access. Plans are in place to revisit the initiative in 12 months’ time in order to ascertain whether there have been long-term benefits. Originality/value Projects building communities of practice involving autistic people as core team members are rare, yet feedback from those involved in the project showed this to be a key aspect of shared learning.
{"title":"The sensory school: working with teachers, parents and pupils to create good sensory conditions","authors":"N. Martin, D. Milton, J. Krupa, S. Brett, Kim Bulman, Daniel D. Callow, Fiona Copeland, Laura Cunningham, Wendy Ellis, Tina Harvey, Monika Moranska, Rebecca Roach, Seanne Wilmot","doi":"10.1108/AIA-09-2018-0034","DOIUrl":"https://doi.org/10.1108/AIA-09-2018-0034","url":null,"abstract":"\u0000Purpose\u0000An alliance of schools and researchers formed a collaborative community of practice in order to understand and improve the sensory school environment for pupils on the autistic spectrum, and incorporate the findings into school improvement planning. The paper aims to discuss this issue.\u0000\u0000\u0000Design/methodology/approach\u0000Representatives of special and mainstream schools in South London and a team of researchers formed the project team, including an autistic researcher. The researchers and a named staff member from each of the schools met regularly over the course of 18 months in order to work on an iterative process to improve the sensory experience pupils had of the school environment. Each school completed sensory audits and observations, and was visited by members of the research team. Parents were involved via meetings with the research team and two conferences were organised to share findings.\u0000\u0000\u0000Findings\u0000Useful outcomes included: developing and sharing of good practice between schools; opportunities for parents of autistic pupils to discuss their concerns, particularly with someone with insider perspective; and exploration of creative ways to achieve pupil involvement and the idea that good autism practice has the potential to benefit all pupils. A resource pack was produced for the schools to access. Plans are in place to revisit the initiative in 12 months’ time in order to ascertain whether there have been long-term benefits.\u0000\u0000\u0000Originality/value\u0000Projects building communities of practice involving autistic people as core team members are rare, yet feedback from those involved in the project showed this to be a key aspect of shared learning.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-09-2018-0034","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44807462","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-21DOI: 10.1108/AIA-06-2018-0021
M. Hersh, S. Elley
Purpose The purpose of this paper is to present new empirical data on the experiences of 120 teachers and professionals working with autistic children and young people across different settings in Poland where autism research on inclusive education is scarce. It explores the relationship of inclusive education to the social and neurodiversity models of disability. It makes evidence-based recommendations for good practice and modelling and evaluating future education and inclusion practices. Design/methodology/approach It uses a survey approach involving a combination of qualitative and quantitative data collection and embeds practical findings in theory, including the relationship of inclusive education to the social and neurodiversity models of disability. Findings The findings include the barriers teachers and related professionals experience in facilitating inclusive teaching and learning and how the following would be useful to autistic students: opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers. Research limitations/implications A survey-based approach has limitations. Practical implications Opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers. Social implications This study can be useful in the development of social skills and communication, social and educational inclusion. Originality/value Polish teachers’ attitudes, experiences and support needs, including some previously overlooked issues, are related to the broader international context beyond Poland. Analysis of the findings is used to derive evidence-based recommendations for good practice and modelling, and evaluating future education and inclusion practices.
{"title":"Barriers and enablers of inclusion for young autistic learners: lessons from the Polish experiences of teachers and related professionals","authors":"M. Hersh, S. Elley","doi":"10.1108/AIA-06-2018-0021","DOIUrl":"https://doi.org/10.1108/AIA-06-2018-0021","url":null,"abstract":"\u0000Purpose\u0000The purpose of this paper is to present new empirical data on the experiences of 120 teachers and professionals working with autistic children and young people across different settings in Poland where autism research on inclusive education is scarce. It explores the relationship of inclusive education to the social and neurodiversity models of disability. It makes evidence-based recommendations for good practice and modelling and evaluating future education and inclusion practices.\u0000\u0000\u0000Design/methodology/approach\u0000It uses a survey approach involving a combination of qualitative and quantitative data collection and embeds practical findings in theory, including the relationship of inclusive education to the social and neurodiversity models of disability.\u0000\u0000\u0000Findings\u0000The findings include the barriers teachers and related professionals experience in facilitating inclusive teaching and learning and how the following would be useful to autistic students: opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers.\u0000\u0000\u0000Research limitations/implications\u0000A survey-based approach has limitations.\u0000\u0000\u0000Practical implications\u0000Opportunities to exercise responsibilities and take leadership roles; social as well as educational inclusion; provision of a safe environment; regular funded autism training in work time; and appropriate use of additional classroom teachers.\u0000\u0000\u0000Social implications\u0000This study can be useful in the development of social skills and communication, social and educational inclusion.\u0000\u0000\u0000Originality/value\u0000Polish teachers’ attitudes, experiences and support needs, including some previously overlooked issues, are related to the broader international context beyond Poland. Analysis of the findings is used to derive evidence-based recommendations for good practice and modelling, and evaluating future education and inclusion practices.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-06-2018-0021","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49655817","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-12DOI: 10.1108/AIA-10-2018-0040
E. Chaplin, J. McCarthy
Purpose The purpose of this paper is to provide a commentary on “diagnosis and treatment of asd in women in secure and forensic hospital”. Design/methodology/approach The approach is a commentary on a personal experience of services. Findings Women with ASD are often not diagnosed until adult years which may impact on their long-term outcomes. Secure services may not always have care teams who are appropriately trained to support a woman with ASD. Originality/value A commentary on an original viewpoint piece published in this special edition on women with autism spectrum disorder.
{"title":"Commentary on “diagnosis and treatment of ASD in women in secure and forensic hospital”","authors":"E. Chaplin, J. McCarthy","doi":"10.1108/AIA-10-2018-0040","DOIUrl":"https://doi.org/10.1108/AIA-10-2018-0040","url":null,"abstract":"\u0000Purpose\u0000The purpose of this paper is to provide a commentary on “diagnosis and treatment of asd in women in secure and forensic hospital”.\u0000\u0000\u0000Design/methodology/approach\u0000The approach is a commentary on a personal experience of services.\u0000\u0000\u0000Findings\u0000Women with ASD are often not diagnosed until adult years which may impact on their long-term outcomes. Secure services may not always have care teams who are appropriately trained to support a woman with ASD.\u0000\u0000\u0000Originality/value\u0000A commentary on an original viewpoint piece published in this special edition on women with autism spectrum disorder.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-10-2018-0040","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43211470","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-12DOI: 10.1108/AIA-09-2018-0037
Priyanka Tharian, S. Henderson, Nataya Wathanasin, N. Hayden, V. Chester, S. Tromans
Purpose Fiction has the potential to dispel myths and helps improve public understanding and knowledge of the experiences of under-represented groups. Representing the diversity of the population allows individuals to feel included, connected with and understood by society. Whether women and girls with autism spectrum disorder (ASD) are adequately and accurately represented in fictional media is currently unknown. The paper aims to discuss this issue. Design/methodology/approach Internet and library searches were conducted to identify female characters with ASD in works of fiction. Examples of such works were selected for further discussion based on their accessibility, perceived historical and cultural significance and additional characteristics that made the work particularly meaningful. Findings The search highlighted a number of female characters with ASD across a range of media, including books, television, film, theatre and video games. Many were written by authors who had a diagnosis of the condition themselves, or other personal experience. Pieces largely portrayed characters with traits that are highly recognised within the academic literature. However, some also appeared to endorse outdated myths and stereotypes. Existing works appear to preferentially portray high functioning autistic women, with limited representation of those whom also have intellectual disability. Originality/value This is the first exploration of the depiction of ASD in females within fiction. There is a need for more works of fiction responsibly depicting females with ASD, as this can help reduce stigma, develop public awareness and recognition and increase representation.
{"title":"Characters with autism spectrum disorder in fiction: where are the women and girls?","authors":"Priyanka Tharian, S. Henderson, Nataya Wathanasin, N. Hayden, V. Chester, S. Tromans","doi":"10.1108/AIA-09-2018-0037","DOIUrl":"https://doi.org/10.1108/AIA-09-2018-0037","url":null,"abstract":"\u0000Purpose\u0000Fiction has the potential to dispel myths and helps improve public understanding and knowledge of the experiences of under-represented groups. Representing the diversity of the population allows individuals to feel included, connected with and understood by society. Whether women and girls with autism spectrum disorder (ASD) are adequately and accurately represented in fictional media is currently unknown. The paper aims to discuss this issue.\u0000\u0000\u0000Design/methodology/approach\u0000Internet and library searches were conducted to identify female characters with ASD in works of fiction. Examples of such works were selected for further discussion based on their accessibility, perceived historical and cultural significance and additional characteristics that made the work particularly meaningful.\u0000\u0000\u0000Findings\u0000The search highlighted a number of female characters with ASD across a range of media, including books, television, film, theatre and video games. Many were written by authors who had a diagnosis of the condition themselves, or other personal experience. Pieces largely portrayed characters with traits that are highly recognised within the academic literature. However, some also appeared to endorse outdated myths and stereotypes. Existing works appear to preferentially portray high functioning autistic women, with limited representation of those whom also have intellectual disability.\u0000\u0000\u0000Originality/value\u0000This is the first exploration of the depiction of ASD in females within fiction. There is a need for more works of fiction responsibly depicting females with ASD, as this can help reduce stigma, develop public awareness and recognition and increase representation.\u0000","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-09-2018-0037","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44642302","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Autistic women and girls: under-recognised, under-researched and under-served","authors":"V. Chester","doi":"10.1108/AIA-01-2019-049","DOIUrl":"https://doi.org/10.1108/AIA-01-2019-049","url":null,"abstract":"","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-01-2019-049","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45851580","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-12DOI: 10.1108/AIA-09-2018-0027
Sarah Markham
Purpose The purpose of this paper is to explore the experience and possibilities for misdiagnosis of women with ASD in secure and forensic hospitals, via the medium of a lived experience case study. To consider the clinical value of the patient perspective of and insight into their disorder. The case study is supplemented by relevant associations to the MHA Code of Practice, the CQC report, Monitoring the Mental Health Act (MHA) 2016–2017, published on 27 February 2018 and current research findings in the fields of service provision, quality of care and treatment of female patients with a diagnosis of ASD. Design/methodology/approach A review and commentary of the author’s lived experience of a formal diagnostic assessment for ASD as a female patient in a secure and forensic hospital. In reviewing aspects of the author’s clinical assessment, the author has made contextual reference to the MHA Code of Practice, the CQC report, Monitoring the MHA 2016–2017, published on 27 February 2018, and current research findings. The account focuses on aspects of the author’s recent experience assessment and treatment for ASD which the author believes may be of use in informing clinical practice. Findings Open-ended exploration of a lived experience account/case study of a diagnostic assessment of an adult female patient for ASD, demonstrating the possible ambiguity of responses to questionnaire-based assessment tools and other deficiencies inherent to the assessment process and care and treatment of adult female ASD sufferers in secure and forensic hospitals. Research limitations/implications The author uses the lived experience as a patient to review and provide commentary on the clinical assessment for ASD. This review is, therefore, informed by an authentic patient perspective and not clinical perspectives. This paper highlights the need for further research into the diagnostic assessment of females for ASD in a secure and forensic hospitals. Practical implications First, to encourage practitioners to extend their range of thinking to be more inclusive of the patient perspective when performing a diagnostic assessment. Second, to increase practitioner awareness of the deficiencies in the current service provision for adult female patients diagnosed with ASD in secure and forensic hospitals. Social implications To improve patient experience of diagnostic assessment for ASD and the quality of the assessment and patient outcomes in secure and forensic hospitals. Originality/value The paper is original in concept in that it considers the inclusion of patient experience/views in assessment and formulation and links them to wider social policy and practice guidance. The case study is an authentic patient account informed by the author’s experience of secure and forensic psychiatric hospitals. The value of the paper may be determined by the extent to which the paper encourages practitioners to consider the patient perspective and experience of the di
{"title":"Diagnosis and treatment of ASD in women in secure and forensic hospitals","authors":"Sarah Markham","doi":"10.1108/AIA-09-2018-0027","DOIUrl":"https://doi.org/10.1108/AIA-09-2018-0027","url":null,"abstract":"\u0000Purpose\u0000The purpose of this paper is to explore the experience and possibilities for misdiagnosis of women with ASD in secure and forensic hospitals, via the medium of a lived experience case study. To consider the clinical value of the patient perspective of and insight into their disorder. The case study is supplemented by relevant associations to the MHA Code of Practice, the CQC report, Monitoring the Mental Health Act (MHA) 2016–2017, published on 27 February 2018 and current research findings in the fields of service provision, quality of care and treatment of female patients with a diagnosis of ASD.\u0000\u0000\u0000Design/methodology/approach\u0000A review and commentary of the author’s lived experience of a formal diagnostic assessment for ASD as a female patient in a secure and forensic hospital. In reviewing aspects of the author’s clinical assessment, the author has made contextual reference to the MHA Code of Practice, the CQC report, Monitoring the MHA 2016–2017, published on 27 February 2018, and current research findings. The account focuses on aspects of the author’s recent experience assessment and treatment for ASD which the author believes may be of use in informing clinical practice.\u0000\u0000\u0000Findings\u0000Open-ended exploration of a lived experience account/case study of a diagnostic assessment of an adult female patient for ASD, demonstrating the possible ambiguity of responses to questionnaire-based assessment tools and other deficiencies inherent to the assessment process and care and treatment of adult female ASD sufferers in secure and forensic hospitals.\u0000\u0000\u0000Research limitations/implications\u0000The author uses the lived experience as a patient to review and provide commentary on the clinical assessment for ASD. This review is, therefore, informed by an authentic patient perspective and not clinical perspectives. This paper highlights the need for further research into the diagnostic assessment of females for ASD in a secure and forensic hospitals.\u0000\u0000\u0000Practical implications\u0000First, to encourage practitioners to extend their range of thinking to be more inclusive of the patient perspective when performing a diagnostic assessment. Second, to increase practitioner awareness of the deficiencies in the current service provision for adult female patients diagnosed with ASD in secure and forensic hospitals.\u0000\u0000\u0000Social implications\u0000To improve patient experience of diagnostic assessment for ASD and the quality of the assessment and patient outcomes in secure and forensic hospitals.\u0000\u0000\u0000Originality/value\u0000The paper is original in concept in that it considers the inclusion of patient experience/views in assessment and formulation and links them to wider social policy and practice guidance. The case study is an authentic patient account informed by the author’s experience of secure and forensic psychiatric hospitals. The value of the paper may be determined by the extent to which the paper encourages practitioners to consider the patient perspective and experience of the di","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-09-2018-0027","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42935841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-12DOI: 10.1108/AIA-09-2018-0036
C. Allely
PurposeFemales with autism spectrum disorder (ASD) may display superficial social skills which may mask their ASD symptomology impacting on the identification of the disorder – known as the “camouflage” hypothesis. Compared to males with ASD, it is increasingly recognised that females with ASD have a stronger ability to imitate behaviour which is socially acceptable, particularly those females who have higher cognitive abilities (i.e. intelligence considered to be within the normal range) (Ehlers and Gillberg, 1993). The paper aims to discuss this issue.Design/methodology/approachThis paper will explore the literature on camouflaging or masking behaviour in females with ASD. A systematic PRISMA review was conducted.FindingsThe capacity to “camouflage” social difficulties in social situations is considered to be one of the main features of the female phenotype of ASD (e.g. Kenyon, 2014). Social imitation or camouflaging enables some level of success and coping, which results in some females never receiving a diagnosis of ASD. They typically may not exhibit any observable functional impairments. However, under the surface of the camouflage, females may experience high levels of subjective stress, anxiety and exhaustion and a need to re-charge or recuperate by withdrawing from any social interaction.Research limitations/implicationsThere is relatively little understanding and knowledge of the female phenotype of ASD. This lack of understanding and knowledge impacts significantly on the ability to identify females with ASD (Laiet al., 2015; Bargielaet al., 2016), which can have a number of negative consequence (Adamouet al., 2018; National Collaborating Centre for Mental Health (UK), 2012).Practical implicationsThere is a need for the development of a camouflaging measure.Originality/valueThere is a real need for further research exploring the positive and negative impact of the phenomenon of “camouflaging”, or “pretending to be normal” in females with ASD.
{"title":"Understanding and recognising the female phenotype of autism spectrum disorder and the “camouflage” hypothesis: a systematic PRISMA review","authors":"C. Allely","doi":"10.1108/AIA-09-2018-0036","DOIUrl":"https://doi.org/10.1108/AIA-09-2018-0036","url":null,"abstract":"PurposeFemales with autism spectrum disorder (ASD) may display superficial social skills which may mask their ASD symptomology impacting on the identification of the disorder – known as the “camouflage” hypothesis. Compared to males with ASD, it is increasingly recognised that females with ASD have a stronger ability to imitate behaviour which is socially acceptable, particularly those females who have higher cognitive abilities (i.e. intelligence considered to be within the normal range) (Ehlers and Gillberg, 1993). The paper aims to discuss this issue.Design/methodology/approachThis paper will explore the literature on camouflaging or masking behaviour in females with ASD. A systematic PRISMA review was conducted.FindingsThe capacity to “camouflage” social difficulties in social situations is considered to be one of the main features of the female phenotype of ASD (e.g. Kenyon, 2014). Social imitation or camouflaging enables some level of success and coping, which results in some females never receiving a diagnosis of ASD. They typically may not exhibit any observable functional impairments. However, under the surface of the camouflage, females may experience high levels of subjective stress, anxiety and exhaustion and a need to re-charge or recuperate by withdrawing from any social interaction.Research limitations/implicationsThere is relatively little understanding and knowledge of the female phenotype of ASD. This lack of understanding and knowledge impacts significantly on the ability to identify females with ASD (Laiet al., 2015; Bargielaet al., 2016), which can have a number of negative consequence (Adamouet al., 2018; National Collaborating Centre for Mental Health (UK), 2012).Practical implicationsThere is a need for the development of a camouflaging measure.Originality/valueThere is a real need for further research exploring the positive and negative impact of the phenomenon of “camouflaging”, or “pretending to be normal” in females with ASD.","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-09-2018-0036","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45437088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-03-12DOI: 10.1108/AIA-09-2018-0035
Elizabeth Kock, A. Strydom, Deirdre O'Brady, D. Tantam
Purpose The purpose of this paper is to explore the experience of intimate relationships of women who have been diagnosed with Autism in adulthood. Design/methodology/approach Semi-structured interviews were used to interview eight participants. The data were transcribed and analysed using the interpretative phenomenological analysis method. Findings Four overall themes were identified. These included “Response to the diagnosis and receiving more information about Autism”, “Factors influencing dating behaviour”, “Sex and sexual experiences” and “Experience of intimate relationships as a person with Autism”. Research limitations/implications The results of this study have implications for both research and clinical practice as it highlights the areas in which women newly diagnosed with autism spectrum disorder (ASD) could benefit from support. Practical implications The study hopes to add to the limited existing research on adult women with ASD. Originality/value To date no similar research has investigated the same phenomenon through a similar method.
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Pub Date : 2019-02-28DOI: 10.1108/AIA-10-2018-0041
Dori Zener
PurposeThe purpose of this paper is to review the barriers that girls and women face in receiving an accurate and timely autism diagnosis. The journey to late-in-life diagnosis will be explored with a focus on mental health and well-being. The aim is to improve the awareness of the female autism phenotype to provide access to early identification and appropriate supports and services.Design/methodology/approachThe author’s clinical experience as an individual, couple and family therapist specializing in girls and women with autism informs the paper. Research on co-occurring mental health experience and diagnoses are reviewed and combined with case examples to outline the themes leading to and obscuring autism diagnosis.FindingsFemales with autism are less likely to be diagnosed or are identified much later than their male counterparts. Living with unidentified autism places significant mental strain on adults, particularly females. Achieving a late-in-life diagnosis is very valuable for adults and can improve self-awareness and access to limited support.Practical implicationsMental health professionals will develop a better understanding of the overlap between autism and psychiatric conditions and should consider autism in females who are seeking intervention.Originality/valueThis paper provides a clinical approach to working with autistic girls and women. This knowledge can complement the existing research literature and help build the foundation for a greater understanding of the female autism phenotype.
{"title":"Journey to diagnosis for women with autism","authors":"Dori Zener","doi":"10.1108/AIA-10-2018-0041","DOIUrl":"https://doi.org/10.1108/AIA-10-2018-0041","url":null,"abstract":"PurposeThe purpose of this paper is to review the barriers that girls and women face in receiving an accurate and timely autism diagnosis. The journey to late-in-life diagnosis will be explored with a focus on mental health and well-being. The aim is to improve the awareness of the female autism phenotype to provide access to early identification and appropriate supports and services.Design/methodology/approachThe author’s clinical experience as an individual, couple and family therapist specializing in girls and women with autism informs the paper. Research on co-occurring mental health experience and diagnoses are reviewed and combined with case examples to outline the themes leading to and obscuring autism diagnosis.FindingsFemales with autism are less likely to be diagnosed or are identified much later than their male counterparts. Living with unidentified autism places significant mental strain on adults, particularly females. Achieving a late-in-life diagnosis is very valuable for adults and can improve self-awareness and access to limited support.Practical implicationsMental health professionals will develop a better understanding of the overlap between autism and psychiatric conditions and should consider autism in females who are seeking intervention.Originality/valueThis paper provides a clinical approach to working with autistic girls and women. This knowledge can complement the existing research literature and help build the foundation for a greater understanding of the female autism phenotype.","PeriodicalId":43640,"journal":{"name":"Advances in Autism","volume":" ","pages":""},"PeriodicalIF":1.2,"publicationDate":"2019-02-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1108/AIA-10-2018-0041","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42276243","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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