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The focus of mental health research in emerging fields should be driven by the priorities of people with relevant lived experience. Autism and ADHD are childhood-onset neurodevelopmental conditions that are associated with a range of health inequalities, including increased risk for eating disorders. The evidence base for how best to support neurodivergent individuals who experience disordered eating is still in its infancy, but research suggests that existing clinical approaches are not currently fit for purpose. In this Personal View, through community consultation with autistic people and people with ADHD who have experienced disordered eating, we present a comprehensive ranked list of research topics that people with lived experience prioritise. These priorities could be clustered into two areas: improving outcomes and identifying causal mechanisms. Within the theme of improving disordered eating outcomes, priorities are the improvement of treatment, the need for neurodiversity training in clinical services, and the identification and minimisation of unintended adverse effects of psychological intervention. Within the theme of identifying causal mechanisms, priorities are the identification of risk factors and a better understanding of the effect of autistic or ADHD neurocognitive profiles as potential contributors to eating disorder vulnerability. The final top ten research priorities are contextualised in terms of how they compare to the existing literature on the overlap between autism or ADHD and eating disorders, and concrete suggestions are made for how to implement these research priorities as testable hypotheses. Research informed by these priorities will build necessary understanding of the reasons behind the increased risk for eating disorders in neurodivergent people, and how to best support people who are affected by disordered eating to live positive and fulfilling lives.
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There is a reliable association between autism and Feeding and Eating Disorders. Concerningly, where these two conditions co-occur, clinical outcomes of Feeding and Eating Disorders are significantly worse, and treatment less effective, than when the Feeding and Eating Disorders occur in neurotypical individuals. Problematically, the reason for the association between autism and Feeding and Eating Disorders is poorly understood, which constrains advances in clinical care. This paper outlines several possible mechanisms that may underlie the observed association and suggests ways in which they may be empirically tested. Mechanisms are split into those producing an artefactual association, and those reflecting a genuine link between conditions. Artefactual associations may be due to conceptual overlap in both diagnostic criteria and measurement, Feeding and Eating Disorders causing transient autistic traits, or the association being non-specific in nature. A genuine association between autism and Feeding and Eating Disorders may be due to common causal factors, autism directly or indirectly causing Feeding and Eating Disorders, and Feeding and Eating Disorders being a female manifestation of autism.
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Trastorno Autístico , Trastornos de Alimentación y de la Ingestión de Alimentos , Humanos , Trastornos de Alimentación y de la Ingestión de Alimentos/fisiopatología , Trastornos de Alimentación y de la Ingestión de Alimentos/etiología , Trastorno Autístico/fisiopatología , Conducta Alimentaria/fisiologíaRESUMEN
This study investigated the factor structure and determined the reliability and validity of the Camouflaging Autistic Traits Questionnaire-Japanese version (CAT-Q-J) among 204 autistic and 410 non-autistic people. Since a confirmatory factor analysis revealed no factor validity of the CAT-Q-J for both autistic and non-autistic adults, an exploratory factor analysis was conducted to ensure the psychometric properties matched those of the original scale as much as possible. The results showed the CAT-Q-J comprised three subscales, a four-item compensation subscale, a five-item masking scale, and a five-item assimilation subscale. The overall CAT-Q-J and all three subscales showed sufficient internal consistency and moderate-to-good and stable test-retest reliability in both the autistic and non-autistic samples. Convergent validity was also supported by the correlations found with measures of autistic traits, well-being, anxiety, and depression. Different from the original CAT-Q, compensation/masking for the autistic sample was not correlated with mental health or autistic traits. The reliability and the validity of the overall CAT-Q-J were confirmed; however, caution should be exercised when interpreting its subscales.
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Trastorno Autístico , Psicometría , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven , Pueblos del Este de Asia , Análisis Factorial , Japón , Reproducibilidad de los Resultados , Encuestas y Cuestionarios/normasRESUMEN
Introduction: The precise epidemiological burden of autism is unknown because of the limited capacity to identify and diagnose the disorder in resource-constrained settings, related in part to a lack of appropriate standardised assessment tools and health care experts. We assessed the reliability, validity, and diagnostic accuracy of the Developmental Diagnostic Dimensional Interview (3Di) in a rural setting on the Kenyan coast. Methods: Using a large community survey of neurodevelopmental disorders (NDDs), we administered the 3Di to 2,110 children aged between 6 years and 9 years who screened positive or negative for any NDD and selected 242 who had specific symptoms suggestive of autism based on parental report and the screening tools for review by a child and adolescent psychiatrist. On the basis of recorded video, a multi-disciplinary team applied the Autism Diagnostic Observation Schedule to establish an autism diagnosis. Internal consistency was used to examine the reliability of the Swahili version of the 3Di, tetrachoric correlations to determine criterion validity, structural equation modelling to evaluate factorial structure and receiver operating characteristic analysis to calculate diagnostic accuracy against Diagnostic Statistical Manual of Mental Disorders (DSM) diagnosis. Results: The reliability coefficients for 3Di were excellent for the entire scale {McDonald's omega (ω) = 0.83 [95% confidence interval (CI) 0.79-0.91]}. A higher-order three-factor DSM-IV-TR model showed an adequate fit with the model, improving greatly after retaining high-loading items and correlated items. A higher-order two-factor DSM-5 model also showed an adequate fit. There were weak to satisfactory criterion validity scores [tetrachoric rho = 0.38 (p = 0.049) and 0.59 (p = 0.014)] and good diagnostic accuracy metrics [area under the curve = 0.75 (95% CI: 0.54-0.96) and 0.61 (95% CI: 0.49-0.73] for 3Di against the DSM criteria. The 3Di had a moderate sensitivity [66.7% (95% CI: 0.22-0.96)] and a good specificity [82.5% (95% CI: 0.74-0.89)], when compared with the DSM-5. However, we observed poor sensitivity [38.9% (95% CI: 0.17-0.64)] and good specificity [83.5% (95% CI: 0.74-0.91)] against DSM-IV-TR. Conclusion: The Swahili version of the 3Di provides information on autism traits, which may be helpful for descriptive research of endophenotypes, for instance. However, for accuracy in newly diagnosed autism, it should be complemented by other tools, e.g., observational clinical judgment using the DSM criteria or assessments such as the Autism Diagnostic Observation Schedule. The construct validity of the Swahili 3Di for some domains, e.g., communication, should be explored in future studies.
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BACKGROUND: To examine the relationship between social camouflage and mental health in Japanese autistic adults and make an international comparison with a sample from the UK. METHODS: This study analysed secondary data of participants with a self-reported diagnosis of autism from Japan (N = 210; 123 men and 87 women) and the UK (N = 305; 181 women, 104, men, and 18 nonbinary). The relationships between the quadratic term of the Camouflaging Autistic Traits Questionnaire and mental health scales, including depression and anxiety, were assessed. RESULTS: The UK sample showed linear relationships, whereas the Japanese sample showed significant nonlinear relationships. The quadratic terms of the Camouflaging Autistic Traits Questionnaire slightly explained generalised anxiety (ß = .168, p = .007), depression (ß = .121, p = .045), and well-being (ß = - .127, p = .028). However, they did not explain the association between social anxiety and the Camouflaging Autistic Traits Questionnaire. LIMITATIONS: Participants had self-reported diagnoses, and while the autism-spectrum quotient provides a cut-off value for screening, it does not enable confirming diagnoses. Mean scores of the Japanese version of the Camouflaging Autistic Traits Questionnaire were lower as compared to the original CAT-Q, which implies that the social camouflage strategy types used by autistic people in Japan and the UK could differ. The cross-sectional design limits causal inferences. CONCLUSION: In the UK, more social camouflage was associated with poorer mental health scores, whereas too little or too much social camouflage was associated with a low mental health score in Japan. The Japanese population is seemingly less aware of and educated on autistic characteristics and considers 'average' behaviour a good thing. This could influence Japanese autistic people's social camouflage use, differing from that of autistic people in the UK. The differences in the relationship between social camouflage and mental health between Japan and the UK could be associated with national-level divergence regarding the culture of autism.
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Trastorno Autístico , Masculino , Adulto , Humanos , Femenino , Trastorno Autístico/diagnóstico , Japón/epidemiología , Salud Mental , Comparación Transcultural , Estudios Transversales , Reino Unido/epidemiologíaRESUMEN
It is frequently reported that females are likely to receive an autism diagnosis at a later age than their male counterparts, despite similar levels of autistic traits. It has been suggested that this delay in diagnosis may in part reflect the propensity of females, more than males, to engage in camouflaging behaviors that reduce the appearance of autism-related traits. This article presents two studies which examined the relationship between gender/sex, camouflaging, and age at diagnosis in two samples of (cis-gender) autistic adults. Study 1 included data from three online samples including 242 autistic men and 570 autistic women aged 18-75 years. Study 2 included data from a longitudinal population-based sample including 24 autistic men and 35 autistic women aged 20-24 years. Camouflaging was measured with the self-report Camouflaging Autistic Traits Questionnaire (CAT-Q). Overall, the results showed that, on average, females were diagnosed later than males. There was a stronger relationship between camouflaging and age at autism diagnosis (AaD) for females, compared with males. Within sample one, there was a significant camouflaging-by-sex interaction; high-camouflaging females had a later AaD. The role of autistic traits and changes in attitudes towards female autism and camouflaging need further exploration. These findings highlight the need for greater clinician and key stakeholder awareness and understanding of camouflaging behavior, particularly for females, during the diagnostic process.
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Trastorno del Espectro Autista , Trastorno Autístico , Adulto , Humanos , Masculino , Femenino , Trastorno Autístico/diagnóstico , Trastorno del Espectro Autista/diagnóstico , Conducta Social , Encuestas y Cuestionarios , AutoinformeRESUMEN
LAY ABSTRACT: In some situations, autistic people feel pressure to change their social behaviour by camouflaging. In other situations, autistic people feel they don't need to change their social behaviour. Instead, they feel they can socialise in ways that feel authentic or true to themselves. Past research has tended to focus on autistic people's experiences of camouflaging rather than their experiences of authenticity. In this study, we asked autistic people what it is like for them when they can socialise in ways that feel authentic or true to themselves. Autistic people described authentic-feeling socialising as more free, spontaneous and open than camouflaging. In supportive environments, this kind of socialising had more positive and less negative consequences than camouflaging. Autistic people felt that having self-awareness and acceptance of their own social needs and being around autistic and nonautistic people who were accepting and understanding helped them to socialise in authentic-feeling ways. Autistic people also spoke about communication behaviours they felt nonautistic people should use to help overcome misunderstandings and create autism-friendly social environments. These findings suggest it is helpful for autistic people to have access to supportive and accepting social environments in which they feel able to socialise in ways that feel authentic to them. In creating such social environments, it is important to focus on nonautistic people's knowledge and attitude towards autistic people and also their ability to use helpful communication behaviours.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastornos Generalizados del Desarrollo Infantil , Humanos , Niño , Emociones , Conducta SocialRESUMEN
In this multi-methods study we explored the characteristics, causes and impact of anxiety in Duchenne muscular dystrophy (DMD) from the perspective of young males with DMD and their parents. Eight young males with DMD (7-18 years) and 14 parents participated in separate focus groups. Perspectives on anxiety were explored using semi-structured interview schedules. Themes were identified using Framework Analysis. Neurodevelopmental, emotional and behavioural symptom scores were obtained using standard instruments including the Strengths and Difficulties Questionnaire and Revised Children's Anxiety and Depression Scale. We identified six common anxiety characteristics: Catastrophic conclusions; Rigidly-held anxieties; Extreme distress; Social anxieties; Physical changes/needs; Unexpected/unfamiliar. Four further themes described influential systemic factors: Individual, Family, and Social responses and Physical environment and service contexts. All DMD participants had significantly higher total difficulties, emotional problems and impact scores than population norms. The Revised Children's Anxiety and Depression Scale showed low sensitivity in identifying anxiety symptoms. Fifty-seven percent (8/14) of parents who had wanted help for their son's anxiety were dissatisfied with the available support. In conclusion, anxiety can severely impact wellbeing and functioning of individuals with DMD. There are important nuances to consider when managing DMD-associated anxiety. We highlight the importance of multimodal assessment considering the multiple contexts within which anxiety arises.
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Distrofia Muscular de Duchenne , Niño , Masculino , Humanos , Distrofia Muscular de Duchenne/complicaciones , Distrofia Muscular de Duchenne/psicología , Grupos Focales , Padres/psicología , Ansiedad/etiología , Investigación CualitativaRESUMEN
BACKGROUND: Autistic adults report a higher prevalence of anxiety and depression than adults without identified autism but have poorer access to appropriate mental health care. Evidence-based psychological therapies are recommended in treatment guidelines for autistic adults, but no study has investigated their effectiveness in large samples representative of the autistic population accessing routine care. This study aimed to examine therapy outcomes for autistic adults in a primary care service. METHODS: In this retrospective, matched, observational cohort study of national health-care records, we used the MODIFY dataset that used linked electronic health-care records, including national data, for individuals who accessed psychological therapy in primary care in Improving Access to Psychological Therapies (IAPT) services in 211 clinical commissioning group areas in England, UK. All adults aged 18 years or older who had completed a course of IAPT in 2012-19 were eligible, and were propensity score matched (1:1) with a comparison group without identified autism. Exact matching was used, when possible, for a range of sociodemographic factors. Primary outcomes were routine metrics that have been nationally defined and used to evaluate IAPT treatments: reliable improvement, reliable recovery, and reliable deterioration. Secondary outcomes were calculated pre-post treatment changes in scores for Patient Health Questionnaire-9, Generalised Anxiety Disorder Assessment-7, and Work and Social Adjustment Scale measures. Subgroup analyses investigated differential effects across a range of sociodemographic factors. FINDINGS: Of 2â515â402 adults who completed at least two sessions of IAPT in 2012-19, 8761 had an autism diagnosis (5054 [57·7%] male and 3707 [42·3%] female) and 1â918â504 did not (631â606 [32·9%] male and 1â286â898 [67·0%] female). After propensity score matching, 8593 autistic individuals were matched with an individual in the comparison group. During IAPT treatment, symptoms of depression and generalised anxiety disorder decreased for most autistic adults, but symptoms were less likely to improve in the autism group than in the comparison group (4820 [56·1%] of 8593 autistic adults had reliable improvement vs 5304 [61·7%] of 8593 adults in the matched group; adjusted odds ratio [ORadj] 0·75, 95% CI 0·70-0·80; p<0·0001) and symptoms were more likely to deteriorate (792 [9·2%] vs 619 [7·2%]; ORadj 1·34, 1·18-1·48; p<0·0001). In the comparison group, improved outcomes were associated with employment and belonging to a higher socioeconomic deprivation category, but this was not the case for autistic adults. INTERPRETATION: Evidence-based psychological therapy for depression or anxiety might be effective for autistic adults but less so than for adults without identified autism. Treatment moderators appear different for autistic individuals, so more research is needed to allow for better targeted and personalised care. FUNDING: Alzheimer's Society.
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Trastorno Autístico , Terapia Cognitivo-Conductual , Humanos , Adulto , Masculino , Femenino , Depresión/epidemiología , Depresión/terapia , Estudios Retrospectivos , Resultado del Tratamiento , Trastornos de Ansiedad/epidemiología , Trastornos de Ansiedad/terapia , Ansiedad/epidemiología , Ansiedad/terapia , Inglaterra/epidemiología , Estudios de Cohortes , Atención Primaria de SaludRESUMEN
BACKGROUND: Autistic people demonstrate focused interests, sensitivity to sensory stimulation, and, compared with the general population, differences in social communication and interaction. We examined whether a combination of the Awareness and Care for My Autistic Traits (ACAT) program and treatment-as-usual is more effective than only treatment-as-usual in increasing the understanding of autistic attributes, reducing treatment stigma, and improving mental health and social adaptation among autistic adolescents and their parents/guardians. METHODS: Forty-nine adolescents and their parents/guardians were randomly assigned to either a combination of ACAT and treatment-as-usual or only treatment-as-usual. The combined group received six weekly 100-minute ACAT sessions, while the treatment-as-usual group received no additional intervention. The primary outcome was the change in understanding of autistic attributes (Autism Knowledge Quiz-Child), administered from pre- to post-intervention. The secondary outcomes included the change in Autism Knowledge Quiz-Parent, reduced treatment stigma, and improved mental health and social adaptation among autistic adolescents and their parents/guardians. A primary outcome measure scale was scored by assessors who were blind to the group assignment. RESULTS: The combined group (both autistic adolescents and their parents/guardians) showed an increase in Autism Knowledge Quiz scores compared to those in the treatment-as-usual group. Autistic adolescents in the combined group also demonstrated a decrease in treatment-related stigma and an improvement in general mental health compared to those in the treatment-as-usual group, while there were no group differences in the change in social adaptation. For parents/guardians, there were no group differences in the change in treatment-related stigma, general mental health, adaptive skills, or attitudes toward their children. CONCLUSIONS: The ACAT program could be an effective treatment modality to increase the understanding of autistic attributes among both autistic adolescents and their parents/guardians. The ACAT program positively affects self-understanding, reduces treatment stigma, and stabilizes behavioral issues for autistic adolescents as a part of mental health measures, but it does not effectively reduce treatment barriers or improve mental health for parents/guardians. Further research should consider whether additional support for parents/guardians could be beneficial. TRIAL REGISTRATION: The study was registered in UMIN (UMIN000029851, 06/01/2018).
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Trastorno Autístico , Terapia Cognitivo-Conductual , Humanos , Adolescente , Trastorno Autístico/terapia , Comunicación , Salud Mental , PadresRESUMEN
The purpose of this study was to evaluate the psychometric features of the Chinese version of the developmental dimensional diagnostic interview-short version (3Di-sv). A total sample of 138 children including 79 children with autism spectrum disorder (ASD) and 59 typically developing children completed the 3Di-sv interview. The Chinese version of the 3Di-sv has a good internal consistency (0.94). Test-retest analysis confirmed the instrument's time stability (0.89). The instrument's concurrent validity with the Autism Behavior Checklist (ABC), the Childhood Autism Rating Scale (CARS) and clinical diagnosis was verified; the correlation between total scores was 0.72, 0.82 and 0.90, respectively. The 3Di-sv significantly distinguished between autistic children and non-autistic children in every area of autism symptoms. Optimal cutoffs were derived using receiver operating characteristics curves. Using clinical diagnosis as criterion, overall sensitivity was 98 % and specificity was 90 %. The study determined that the Chinese version of 3Di-sv can well distinguish autistic children from typically developing children.
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Trastorno del Espectro Autista , Trastorno Autístico , Niño , Humanos , Trastorno del Espectro Autista/diagnóstico , Trastorno Autístico/diagnóstico , Pueblos del Este de Asia , Reproducibilidad de los Resultados , Curva ROCRESUMEN
This study aimed to investigate the prevalence of childhood picky eating (PE) and to identify risk factors associated with different PE trajectories using data from the Growing up in Scotland research survey. PE was operationalised using three items across three study sweeps, at ages 2, 5 and 10 years respectively. We found 13.5 % of children with PE at age 2, 22.2 % at age 5, and 6.4 % at age 10. From these, we defined three PE categories: transient PE in early childhood (23.3 %), persistent PE into late childhood (3.7 %) and PE absent (73.0 %). Using multinomial logistic regression, we investigated associations between child and family characteristics and transient and persistent PE, adjusting for potential confounders. Various factors were associated with increased risk of persistent pickiness, including mothers who smoked during pregnancy and children whose mothers reported feeding challenges at 9-12 months. These findings support the view that PE behaviours are common and tend to remit by adolescence although a small number of children are at risk of experiencing longer term problems. Families of children who are exposed to such risks may benefit from preventative interventions.
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Irritabilidad Alimentaria , Femenino , Adolescente , Niño , Humanos , Preescolar , Estudios de Cohortes , Prevalencia , Factores de Riesgo , Madres , Conducta Alimentaria , Preferencias Alimentarias , Ingestión de Alimentos , Encuestas y CuestionariosRESUMEN
OBJECTIVE: To identify clinical features that could distinguish children presenting with autistic-like features and a history of severe early maltreatment from children with idiopathic autism spectrum disorders (ASDs). DESIGN: Matched-comparison study. SETTING: Great Ormond Street Hospital, UK. PARTICIPANTS: 46 children with a history of early maltreatment, mean (SD) age 10.6 (3.3) years and 47 children with an ASD, mean (SD) age 10.4 (2.9) years. MAIN OUTCOME MEASURES: A range of standardised interview and observational measures that are designed to quantify autistic traits. Caregiver and teacher reports were obtained on broader aspects of behavioural and emotional adjustment. RESULTS: Both groups had normal range IQ and were predominantly male. On the basis of autistic traits alone, caregiver interview and structured observation concurred that over 60% of the formerly maltreated children met criteria for an ASD. Autistic symptom profiles were very similar in both groups, although children with idiopathic ASD had significantly more marked repetitive and stereotyped behaviours. Teacher and caregiver reports indicated that children from both groups had an increased and broadly similar prevalence of emotional and behavioural disorders. CONCLUSION: Children presenting with a history of early maltreatment, who show autistic traits of behaviour, have a high risk of meeting diagnostic criteria for ASD. Their symptom profiles are virtually indistinguishable from children with idiopathic autism.
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Trastorno del Espectro Autista , Trastorno Autístico , Niño , Humanos , Masculino , Femenino , Trastorno Autístico/diagnóstico , Trastorno Autístico/epidemiología , Trastorno Autístico/psicología , Trastorno del Espectro Autista/epidemiología , Conducta Infantil , Emociones , PrevalenciaRESUMEN
Interest in social camouflaging has led to a multiplicity of measurement methods of uncertain validity. This two-part investigation first used a systematic review ("Study 1") to identify and appraise methods used to quantify camouflaging of autistic traits, using the Consensus-based Standards for the Selection of Health Status Measurement Instruments checklist. A total of 16 distinct measurement tools were identified; all are in the preliminary phases of psychometric evaluation. The systematic review highlighted: (1) the need for parent-report tools which specifically measure camouflaging; and (2) a lack of studies looking at associations between different methods of camouflaging, which limits understanding of their validity. "Study 2" aimed to begin to address these gaps in knowledge. We created a parent-report version of the Camouflaging Autistic Traits Questionnaire (CAT-Q) and evaluated its concurrent validity in autistic young people by examining associations with the self-report CAT-Q and a discrepancy measure. Discriminant validity was investigated by comparing all three methods of measuring camouflaging to a measure of social skills, to test whether they assess a construct distinct from social ability. The self- and parent-report CAT-Q were significantly related (r = 0.47, 95% CI = 0.24-0.65), and were related weakly (r = 0.20, 95% CI = -0.06 to 0.43) and strongly (r = 0.46, 95% CI = 0.23-0.64), respectively, to the discrepancy approach. No measure was associated with social skills. Improving the psychometric properties of these methods, and introducing a novel parent-report measure, may help selection of appropriate methods in future research and integration into clinical practice.
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Trastorno del Espectro Autista , Trastorno Autístico , Humanos , Trastorno Autístico/diagnóstico , Trastorno del Espectro Autista/diagnóstico , Encuestas y Cuestionarios , Autoinforme , Habilidades SocialesRESUMEN
Camouflaging describes masking or compensating for autistic traits and/or related difficulties. Some evidence suggests autistic females camouflage more than autistic males, potentially contributing to delayed or missed diagnosis. Studies predominantly adopt self-report measures of camouflaging, potentially reflecting a person's intent to camouflage without accurately measuring effectiveness (i.e., success in fulfilling the intended effect of minimizing the appearance of autistic traits) of camouflaging. Discrepancy scores between underlying cognitive difficulties (e.g., theory of mind) and observed autistic traits (henceforth camoToM ), or between self-reported autistic traits and observed autistic traits (henceforth camoSRS ), may provide a more accurate measure of camouflaging effectiveness. Three measures of camouflaging administered to autistic males (n = 46) and females (n = 40), and adults with equally high levels of autistic traits but no diagnosis (n = 45 males, n = 43 females) recruited from a large population-based sample were compared. Self-report measures of camouflaging were significantly correlated with camoSRS scores only. Both discrepancy scores were correlated with each other. Adults with high autistic traits, but no diagnosis, had higher discrepancy camouflaging scores than diagnosed adults, but self-reported scores were similar. Diagnosed females scored higher than diagnosed males across all camouflaging measures, but no sex difference occurred in the high trait group. This might indicate that autistic females have higher intentions and greater effectiveness when camouflaging, compared with autistic males. For camoSRS only, high trait males scored significantly higher than diagnosed males; no group difference occurred for females. These results suggest that, despite all participants intending to camouflage to some extent, effective camouflaging as measured by discrepancy scores is higher in undiagnosed high autistic trait individuals. One interpretation is that effective camouflaging reduces the likelihood of autism diagnosis in males and females with high autistic traits.
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Trastorno del Espectro Autista , Trastorno Autístico , Humanos , Masculino , Femenino , Adulto Joven , Trastorno Autístico/diagnóstico , Trastorno Autístico/psicología , Autoinforme , Trastorno del Espectro Autista/psicologíaRESUMEN
LAY ABSTRACT: Nearly three out of four autistic people experience mental health problems such as stress, anxiety or depression. The research already done does not guide us on how best to prevent or treat mental health problems for autistic people. Our aim was to look at the benefits and harms of different interventions on mental health outcomes in autistic people. We searched all the published randomised controlled trials (RCTs) about interventions for mental health conditions in autistic people until 17 October 2020. We also searched for RCTs that were not published in peer-reviewed journals. These were obtained from registers of clinical trials online. We then combined the information from all these trials using advanced statistical methods to analyse how good the interventions are. Seventy-one studies (3630 participants) provided information for this research. The studies reported how participants were responding to the intervention for only a short period of time. The trials did not report which interventions worked for people with intellectual disability. In people without intellectual disability, some forms of cognitive behavioural therapy and mindfulness therapy may be helpful. However, further research is necessary. Many trials used medications to target core features of autism rather than targeting mental health conditions, but these medications did not help autistic people. Until we have more evidence, treatment of mental health conditions in autistic people should follow the evidence available for non-autistic people. We plan to widely disseminate the findings to healthcare professionals through medical journals and conferences and contact other groups representing autistic people.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Humanos , Ansiedad/terapia , Trastorno Autístico/terapia , Depresión/terapia , Metaanálisis en Red , Evaluación de Resultado en la Atención de Salud , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
Gender dysphoria is distress in relation to incongruence between an individual's gender and sex assigned at birth. Gender clinics offer support for gender dysphoria, and there is a higher prevalence of autism in young people attending such clinics than in the general population. We aimed to investigate the lived experiences of autistic young people who have experienced gender dysphoria, and their parents, using a multi-perspectival IPA design. Young autistic people aged 13-17 years (n = 15), and their parents (n = 16), completed in-depth interviews about the young person's experience of gender dysphoria. We analysed each individual transcript to generate individual themes, and for each of the dyads, developed themes which acknowledged the similarities and differences in parent-child perspectives. The first superordinate theme was coping with distress which had two subordinate themes; understanding difficult feelings and focus on alleviating distress with external support. This theme described how young people were overwhelmed by negative feelings which they came to understand as being about gender incongruence and looked to alleviate these feelings through a gender transition. The second superordinate theme was working out who I am which had two subordinate themes: the centrality of different identities and needs and thinking about gender. This theme described how young people and their parents focused on different needs; while young people more often focused on their gender-related needs, parents focused on autism-related needs. We conclude that young people and parents may have different perspectives and priorities when it comes to meeting the needs of autistic young people who experience gender dysphoria.
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Trastorno Autístico , Disforia de Género , Recién Nacido , Humanos , Adolescente , Trastorno Autístico/complicaciones , Identidad de Género , Emociones , PadresRESUMEN
BACKGROUND: Autistic people are overrepresented in gender clinic settings, but limited evidence is available to guide clinical decision making for this patient group. We aimed to generate a comprehensive understanding of the phenomenology of gender dysphoria in autistic people. METHODS: We conducted a multi-perspectival interpretative phenomenological analysis (IPA), from five different perspectives; autistic young people and adults with experience of gender dysphoria, parents of young people, and clinicians working with autistic people with gender dysphoria in both adult and young person settings (n = 68). RESULTS: IPA analysis resulted in two themes, 'discovering gender identity' and 'the complexities of moving towards gender comfort'. Participants agreed that there was often an interaction between gender dysphoria and features of autism such as sensory sensitivities. There was relative consensus across groups about the need for autism adaptations to be made in gender clinics. Autistic adults were more likely to see autism as an important identity than young people, but both groups were clear that autism did not impair their understanding of gender. In contrast, some parents and clinicians working with young people expressed concern that autism did impact self-understanding. DISCUSSION: While the groups tended to agree on the ways in which particular features of autism can compound gender dysphoria, there were a range of perspectives on the ways in which autism impacted on self-knowledge. CONCLUSION: Recommendations for adaptations when working with autistic people with gender dysphoria are presented.
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Trastorno del Espectro Autista , Trastorno Autístico , Disforia de Género , Adulto , Humanos , Masculino , Femenino , Adolescente , Identidad de Género , PadresRESUMEN
LAY ABSTRACT: Autistic people are more likely to have a gender identity which does not match their sex assigned at birth. Some people experience distress about their sex and gender not matching, which is called gender dysphoria. Such individuals may wish to attend a gender clinic to access healthcare support for gender dysphoria. Currently, there is limited evidence to help clinicians best support autistic people who need healthcare for gender dysphoria. We wanted to find out what healthcare clinicians think about working with autistic patients with gender dysphoria. We interviewed 16 clinicians who work in healthcare services with adults and young people who are autistic and experience gender dysphoria. We recorded the interviews and carefully analysed the content to find key themes. We found that clinicians worked with patients to try and better understand their experiences of gender dysphoria. Clinicians identified features of autism that they believed were related to gender identity and dysphoria including different thinking styles, social differences, and sensory sensitivities. Clinicians noticed that autistic people spoke about their gender in different ways to non-autistic people. Clinicians tried to adapt their practice to better meet the needs of their autistic patients. These adaptations tended to focus on differences in the assessment process, for example, offering longer or shorter appointments and changing their communication style. We conclude that clinicians were offering an individualised approach to autistic patients experiencing gender dysphoria. However, these clinicians were particularly interested in working with autistic people, and so may not be representative of the wider clinician population. Clinicians working in this area should receive training on autism adaptations and the intersection of autism and gender dysphoria.
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Trastorno del Espectro Autista , Trastorno Autístico , Disforia de Género , Adulto , Recién Nacido , Humanos , Masculino , Femenino , Adolescente , Identidad de Género , Disforia de Género/epidemiología , Trastorno del Espectro Autista/epidemiología , Atención a la SaludRESUMEN
LAY ABSTRACT: Non-autistic children tend to show gendered patterns of play behaviours - boys are more likely to play with 'masculine' toys, and girls are more likely to play with 'feminine' toys. However, little is known about whether autistic children follow these patterns as well. We looked at the masculinity and femininity of autistic and non-autistic children's play behaviours at multiple time points. Parents reported their children's play behaviours at ages 30, 42 and 57 months, and children reported their own play behaviours at 8 years old. We found no difference between autistic and non-autistic girls, who both showed more feminine play behaviours as they got older. Autistic boys' play behaviours were reported as less masculine than non-autistic boys at 42 and 57 months, and at 8 years old. We also found that non-autistic boys' play tended to become more masculine as they got older, but this was not the case for autistic boys. Our findings suggest that differences in autistic and non-autistic boys' play behaviours may develop at around 42 months old.