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      The PAAFID project: exploring the perspectives of autism in adult females among intellectual disability healthcare professionals

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          Abstract

          Purpose

          The purpose of this paper is to explore the perspectives of healthcare professionals on autism in adult females with intellectual disability (ID), including regarding the gender ratio of autism, the clinical manifestation of autism in females, and the recognition, screening and diagnosis of autism.

          Design/methodology/approach

          The questionnaire was developed following a review of the relevant literature and distributed to professionals within three healthcare trusts as well as members of two clinical research groups. The questionnaire was completed by 80 ID healthcare professionals. Data were aggregated and analysed using Microsoft Excel.

          Findings

          ID healthcare professionals had a lack of recognition of the smaller gender ratio of autism in patients with ID as compared to those without ID. Most respondents reported believing that autism manifests differently in females; with women demonstrating a greater ability to mask their symptoms. A considerable proportion of participants reported feeling less confident in recognising, screening and diagnosing autism in female patients, with many endorsing a wish for additional training in this area.

          Practical implications

          These findings suggest that ID healthcare professionals are keen to improve their skills in providing services for women with autism. Training programmes at all levels should incorporate the specific needs of women with ASD, and individual professionals and services should actively seek to address these training needs in order to promote best practice and better outcomes for women with autism.

          Originality/value

          This is the first published questionnaire exploring the perspectives of healthcare professionals regarding autism in adult females with ID.

          Related collections

          Most cited references 22

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          Sex differences in the brain: implications for explaining autism.

          Empathizing is the capacity to predict and to respond to the behavior of agents (usually people) by inferring their mental states and responding to these with an appropriate emotion. Systemizing is the capacity to predict and to respond to the behavior of nonagentive deterministic systems by analyzing input-operation-output relations and inferring the rules that govern such systems. At a population level, females are stronger empathizers and males are stronger systemizers. The "extreme male brain" theory posits that autism represents an extreme of the male pattern (impaired empathizing and enhanced systemizing). Here we suggest that specific aspects of autistic neuroanatomy may also be extremes of typical male neuroanatomy.
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            The epidemiology of autism spectrum disorders.

            Autism spectrum disorders (ASDs) are complex, lifelong, neurodevelopmental conditions of largely unknown cause. They are much more common than previously believed, second in frequency only to mental retardation among the serious developmental disorders. Although a heritable component has been demonstrated in ASD etiology, putative risk genes have yet to be identified. Environmental risk factors may also play a role, perhaps via complex gene-environment interactions, but no specific exposures with significant population effects are known. A number of endogenous biomarkers associated with autism risk have been investigated, and these may help identify significant biologic pathways that, in turn, will aid in the discovery of specific genes and exposures. Future epidemiologic research should focus on expanding population-based descriptive data on ASDs, exploring candidate risk factors in large well-designed studies incorporating both genetic and environmental exposure data and addressing possible etiologic heterogeneity in studies that can stratify case groups and consider alternate endophenotypes.
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              Is There a "Language of the Eyes"? Evidence from Normal Adults, and Adults with Autism or Asperger Syndrome

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                Author and article information

                Contributors
                Journal
                AIA
                10.1108/AIA
                Advances in Autism
                AIA
                Emerald Publishing
                2056-3868
                03 July 2019
                : 5
                Issue : 3 Issue title : Women, girls, and autism spectrum disorders: part II Issue title : Women, girls, and autism: part I
                : 157-170
                Affiliations
                Department of Psychiatry, Leicestershire Partnership NHS Trust, Leicester, UK
                Department of Health Sciences, Mental Health, Ageing, Public Health and Primary Care (MAPP) Group, University of Leicester , Leicester, UK
                Department of Psychiatry, Partnerships in Care Learning Disability Services, Norfolk, UK
                Department of Medical, University of East Anglia , Norwich, UK
                University Hospitals of Leicester NHS Trust , Leicester, UK
                Department of Intellectual Disability, Hertfordshire Partnership University NHS Foundation Trust , Radlett, UK
                Department of Intellectual Disability, Leicestershire Partnership NHS Trust, Leicester, UK
                Author notes
                Samuel Tromans is the corresponding author and can be contacted at: samueljtromans@doctors.org.uk
                Article
                622493 AIA-09-2018-0033.pdf AIA-09-2018-0033
                10.1108/AIA-09-2018-0033
                © Emerald Publishing Limited
                Page count
                Figures: 0, Tables: 4, Equations: 0, References: 48, Pages: 14, Words: 5538
                Product
                Categories
                research-article, Research paper
                Custom metadata
                yes
                yes
                JOURNAL
                included

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