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      Journey to diagnosis for women with autism

      review-article
      Dori Zener
      Advances in Autism
      Emerald Publishing
      Women, Autism spectrum disorder, Female, Non-binary, Diagnosis, Self-diagnosis, Mental health, Suicide

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          Abstract

          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.

          Related collections

          Most cited references25

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          • Abstract: found
          • Article: found
          Is Open Access

          “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions

          Camouflaging of autistic characteristics in social situations is hypothesised as a common social coping strategy for adults with autism spectrum conditions (ASC). Camouflaging may impact diagnosis, quality of life, and long-term outcomes, but little is known about it. This qualitative study examined camouflaging experiences in 92 adults with ASC, with questions focusing on the nature, motivations, and consequences of camouflaging. Thematic analysis was used to identify key elements of camouflaging, which informed development of a three-stage model of the camouflaging process. First, motivations for camouflaging included fitting in and increasing connections with others. Second, camouflaging itself comprised a combination of masking and compensation techniques. Third, short- and long-term consequences of camouflaging included exhaustion, challenging stereotypes, and threats to self-perception. Electronic supplementary material The online version of this article (doi:10.1007/s10803-017-3166-5) contains supplementary material, which is available to authorized users.
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            • Article: not found

            Shared heritability of attention-deficit/hyperactivity disorder and autism spectrum disorder

            Attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD) are both highly heritable neurodevelopmental disorders. Evidence indicates both disorders co-occur with a high frequency, in 20–50% of children with ADHD meeting criteria for ASD and in 30-80% of ASD children meeting criteria for ADHD. This review will provide an overview on all available studies [family based, twin, candidate gene, linkage, and genome wide association (GWA) studies] shedding light on the role of shared genetic underpinnings of ADHD and ASD. It is concluded that family and twin studies do provide support for the hypothesis that ADHD and ASD originate from partly similar familial/genetic factors. Only a few candidate gene studies, linkage studies and GWA studies have specifically addressed this co-occurrence, pinpointing to some promising pleiotropic genes, loci and single nucleotide polymorphisms (SNPs), but the research field is in urgent need for better designed and powered studies to tackle this complex issue. We propose that future studies examining shared familial etiological factors for ADHD and ASD use a family-based design in which the same phenotypic (ADHD and ASD), candidate endophenotypic, and environmental measurements are obtained from all family members. Multivariate multi-level models are probably best suited for the statistical analysis.
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              • Article: not found

              Sleep problems in autism spectrum disorders: prevalence, nature, & possible biopsychosocial aetiologies.

              As considerably more people are diagnosed with an autism spectrum disorder (ASD), interest in the associated behaviours, including sleep problems has increased. This has resulted in a subsequent increase in the research related to the sleep problems occurring in people with an ASD. This article summarizes and evaluates the current literature related to a) the higher prevalence of a sleep problem compared to typically developing children, b) the specific types of sleep problems for people with an ASD, and c) the possible aetiology of sleep problems in the ASDs within a biopsychosocial framework. It is concluded that recent studies confirm that the majority of this population are likely to experience sleep difficulties, with settling issues in children with an ASD the most commonly reported. However, exploration of the types of sleep difficulties and associated aetiological factors in the ASDs is still in its infancy.
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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                12 March 2019
                : 5
                Issue : 1 Issue title : Women, girls, and autism spectrum disorders: part I Issue title : Women, girls, and autism: part I
                : 2-13
                Affiliations
                [1]Toronto, Canada
                Author notes
                Dori Zener can be contacted at: dori@dorizener.com
                Article
                622497 AIA-10-2018-0041.pdf AIA-10-2018-0041
                10.1108/AIA-10-2018-0041
                93e9c228-0ae8-42e4-bddd-07d0680ea528
                © Emerald Publishing Limited
                History
                : 14 October 2018
                : 03 December 2018
                : 20 December 2018
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 52, Pages: 12, Words: 0
                Categories
                review-article, General review
                cat-HSC, Health & social care
                Custom metadata
                no
                yes
                JOURNAL
                included

                Health & Social care
                Autism spectrum disorder,Female,Non-binary,Diagnosis,Self-diagnosis,Mental health,Suicide,Women

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