Advances in Autism : 2019 - Issue 1 : Women, girls, and autism : part I

samedi 23 mars 2019

1. Allely CS. Understanding and recognising the female phenotype of autism spectrum disorder and the “camouflage” hypothesis : a systematic PRISMA review. Advances in Autism ;2018 (2019/03/12) ;5(1):14-37.

Purpose Females 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/approach This paper will explore the literature on camouflaging or masking behaviour in females with ASD. A systematic PRISMA review was conducted. Findings The 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/implications There 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 (Lai et al., 2015 ; Bargiela et al., 2016), which can have a number of negative consequence (Adamou et al., 2018 ; National Collaborating Centre for Mental Health (UK), 2012). Practical implications There is a need for the development of a camouflaging measure. Originality/value There 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.

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2. Chaplin E, McCarthy J. Commentary on “diagnosis and treatment of ASD in women in secure and forensic hospital”. Advances in Autism ;2018 (2019/03/12) ;5(1):77-79.

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.

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3. Chester V. Autistic women and girls : under-recognised, under-researched and under-served. Advances in Autism ;2019 (2019/03/12) ;5(1):1-1.

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4. Kock E, Strydom A, O’Brady D, Tantam D. Autistic women’s experience of intimate relationships : the impact of an adult diagnosis. Advances in Autism ;2019 (2019/03/12) ;5(1):38-49.

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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5. Markham S. Diagnosis and treatment of ASD in women in secure and forensic hospitals. Advances in Autism ;2018 (2019/03/12) ;5(1):64-76.

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 diagnostic assessment and how this and subsequent care and treatment may affect the adult female patient in secure and forensic hospitals.

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6. Tharian PR, Henderson S, Wathanasin N, Hayden N, Chester V, Tromans S. Characters with autism spectrum disorder in fiction : where are the women and girls ?. Advances in Autism ;2019 (2019/03/12) ;5(1):50-63.

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.

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7. Zener D. Journey to diagnosis for women with autism. Advances in Autism ;2019 (2019/03/12) ;5(1):2-13.

Purpose The 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/approach The 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. Findings Females 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 implications Mental 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/value This 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.

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