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1.
Psychol Med ; 54(10): 2313-2343, 2024 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-38757186

RESUMEN

Autistic children and young people (CYP) experience mental health difficulties but face many barriers to accessing and benefiting from mental health care. There is a need to explore strategies in mental health care for autistic CYP to guide clinical practice and future research and support their mental health needs. Our aim was to identify strategies used to improve mental health care for autistic CYP and examine evidence on their acceptability, feasibility, and effectiveness. A systematic review and meta-analysis were carried out. All study designs reporting acceptability/feasibility outcomes and empirical quantitative studies reporting effectiveness outcomes for strategies tested within mental health care were eligible. We conducted a narrative synthesis and separate meta-analyses by informant (self, parent, and clinician). Fifty-seven papers were included, with most investigating cognitive behavioral therapy (CBT)-based interventions for anxiety and several exploring service-level strategies, such as autism screening tools, clinician training, and adaptations regarding organization of services. Most papers described caregiver involvement in therapy and reported adaptations to communication and intervention content; a few reported environmental adjustments. In the meta-analyses, parent- and clinician-reported outcomes, but not self-reported outcomes, showed with moderate certainty that CBT for anxiety was an effective treatment compared to any comparison condition in reducing anxiety symptoms in autistic individuals. The certainty of evidence for effectiveness, synthesized narratively, ranged from low to moderate. Evidence for feasibility and acceptability tended to be positive. Many identified strategies are simple, reasonable adjustments that can be implemented in services to enhance mental health care for autistic individuals. Notable research gaps persist, however.


Asunto(s)
Trastorno Autístico , Servicios de Salud Mental , Humanos , Niño , Adolescente , Trastorno Autístico/terapia , Trastorno Autístico/psicología , Terapia Cognitivo-Conductual/métodos
2.
Compr Psychiatry ; 135: 152525, 2024 Aug 22.
Artículo en Inglés | MEDLINE | ID: mdl-39191097

RESUMEN

BACKGROUND: Camouflaging of autistic traits involves hiding or compensating for autistic characteristics, often due to stigma or a desire to fit in with others. This behaviour has been associated with mental health issues in autistic individuals. The 2 5-item Camouflaging Autistic Traits Questionnaire (CAT-Q) is the most commonly used self-report measure of camouflaging. In this study, a 9-item short form version was developed for use in clinical and research settings. AIMS: To construct and psychometrically validate a brief self-report measure of camouflaging. METHOD: The Camouflaging Autistic Traits Questionnaire - Short Form (CATQ-SF) was developed and its factor structure and psychometric properties were evaluated in two studies. Study 1 used a large, online sample of autistic and non-autistic adults (N = 832) to evaluate the factor structure, psychometric properties, and measurement invariance of the CATQ-SF. Study 2 used an independent sample of autistic and non-autistic adults (N = 80) to test Study 1's findings. RESULTS: In Study 1, evidence for a three-factor structure was observed, with good internal consistency (combined autistic & non-autistic α = 0.84). In addition, the instrument demonstrated measurement invariance, and reliably predicted higher levels of autistic traits. In Study 2, the 3-factor structure was replicated, and good internal consistency was again observed (combined autistic and non-autistic α = 0.89). In both studies, psychometric properties were of similar or higher validity compared to the full-form CAT-Q. CONCLUSIONS: The CATQ-SF can be used by clinicians and researchers to measure camouflaging in autistic and non-autistic adults quickly and reliably.

3.
Psychol Med ; 53(10): 4539-4549, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-35904163

RESUMEN

BACKGROUND: The purpose of this paper is to identify the trajectory of conduct and emotional problems for young people within the general population at four time points (between 9 years 7 months and 16 years 6 months), investigate their relationship with hyperactive/inattentive traits and explore the moderating effect of autistic social traits (ASTs). METHODS: Data from 9305 individuals involved in The Avon Longitudinal Study of Parents and Children (ALSPAC) study were included. Conduct and emotional problems and hyperactive/inattentive traits were measured by the Strengths and Difficulties Questionnaire. ASTs were assessed using the Social Communication Disorder Checklist. Individual trajectories for conduct and emotional problems were identified via growth curve modelling. Hyperactive/inattentive traits were included within the growth curve model as a time-varying covariate to determine their effect on these outcomes. Finally, participants were split into two groups (below and above clinical threshold ASTs Groups) and multi-group invariance testing was conducted on the data to identify the moderating effect of ASTs on the relationship between hyperactive/inattentive traits and outcomes (i.e. conduct and emotional problems). RESULTS: Hyperactive/inattentive traits were associated with higher rates of conduct and emotional problems for both boys and girls. The presence of ASTs moderated these relationships for boys, but not for girls, by increasing the risk of boys with hyperactive/inattentive traits developing greater conduct and emotional problems. CONCLUSIONS: These findings underscore the importance of identifying hyperactive/inattentive traits and ASTs in young people and addressing the increased risk of conduct and emotional problems. Research and clinical implications are explored.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad , Niño , Humanos , Masculino , Femenino , Adolescente , Estudios Longitudinales , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Trastorno por Déficit de Atención con Hiperactividad/psicología , Caracteres Sexuales , Fenotipo , Comunicación
4.
Psychol Med ; 53(3): 814-822, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-34154678

RESUMEN

BACKGROUND: Autistic people show diverse trajectories of autistic traits over time, a phenomenon labelled 'chronogeneity'. For example, some show a decrease in symptoms, whilst others experience an intensification of difficulties. Autism spectrum disorder (ASD) is a dimensional condition, representing one end of a trait continuum that extends throughout the population. To date, no studies have investigated chronogeneity across the full range of autistic traits. We investigated the nature and clinical significance of autism trait chronogeneity in a large, general population sample. METHODS: Autistic social/communication traits (ASTs) were measured in the Avon Longitudinal Study of Parents and Children using the Social and Communication Disorders Checklist (SCDC) at ages 7, 10, 13 and 16 (N = 9744). We used Growth Mixture Modelling (GMM) to identify groups defined by their AST trajectories. Measures of ASD diagnosis, sex, IQ and mental health (internalising and externalising) were used to investigate external validity of the derived trajectory groups. RESULTS: The selected GMM model identified four AST trajectory groups: (i) Persistent High (2.3% of sample), (ii) Persistent Low (83.5%), (iii) Increasing (7.3%) and (iv) Decreasing (6.9%) trajectories. The Increasing group, in which females were a slight majority (53.2%), showed dramatic increases in SCDC scores during adolescence, accompanied by escalating internalising and externalising difficulties. Two-thirds (63.6%) of the Decreasing group were male. CONCLUSIONS: Clinicians should note that for some young people autism-trait-like social difficulties first emerge during adolescence accompanied by problems with mood, anxiety, conduct and attention. A converse, majority-male group shows decreasing social difficulties during adolescence.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Adolescente , Niño , Femenino , Humanos , Masculino , Trastorno del Espectro Autista/epidemiología , Estudios Longitudinales , Afecto , Ansiedad
5.
J Child Psychol Psychiatry ; 63(11): 1405-1414, 2022 11.
Artículo en Inglés | MEDLINE | ID: mdl-35174492

RESUMEN

BACKGROUND: Autism can be diagnosed from 2 years of age, although most autistic people receive their diagnosis later than this after they have started education. Research is required to understand why some autistic children are diagnosed late, and the level and nature of unmet need prior to diagnosis for late-diagnosed children. METHODS: We examined trajectories of emotional, behavioural and social difficulties (EBSDs) across childhood and adolescence, comparing 'earlier-diagnosed' (diagnosed 7 years or younger) with 'late-diagnosed' (diagnosed between 8 and 14 years) autistic children. Data were from the Millennium Cohort Study, a population-based UK birth cohort. EBSDs were measured using the parent-report Strengths and Difficulties Questionnaire, at 3, 5, 7, 11 and 14 years. We used Growth Curve Modelling to investigate levels and rates of change in these difficulties, and to compare earlier- (n = 146) and late-diagnosed (n = 284) autistic children. RESULTS: Aged 5, earlier-diagnosed autistic children had more emotional (i.e., internalising), conduct, hyperactivity and social difficulties; although clinical difficulties in these areas were nevertheless common in late-diagnosed children. There was a faster annual increase in scores for all domains for late-diagnosed children, and by age 14 years, they had higher levels of EBSDs. These results persisted when we ran adjusted models, to account for the late-diagnosed group having higher rates of late-diagnosed attention deficit/hyperactivity disorder, higher IQ, a higher proportion of females and older and more educated mothers. CONCLUSIONS: Emotional, behavioural and social difficulties are associated with, and may influence, the timing of autism diagnosis. Late-diagnosed autistic children often have high levels of mental health and social difficulties prior to their autism diagnosis, and tend to develop even more severe problems as they enter adolescence.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad , Trastorno Autístico , Femenino , Niño , Adolescente , Humanos , Trastorno Autístico/diagnóstico , Trastorno Autístico/psicología , Estudios de Cohortes , Salud Mental , Escolaridad
6.
Eur Eat Disord Rev ; 30(5): 592-603, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-35791612

RESUMEN

OBJECTIVE: Up to 37% of patients with anorexia nervosa score above cut-off on autism screening measures. These individuals typically have poorer outcomes from standard eating disorder interventions and could therefore benefit from adaptations. Accurately identifying these individuals is important for improving autism referral processes and clinical pathway decisions. This study's aim was to identify subscales of questionnaires measuring constructs associated with either autism or eating disorders that, when combined with traditional autism screening measures, would improve the ability to identify women with restrictive eating disorders who might benefit from a full autism assessment. METHOD: One hundred and sixty women with restrictive eating disorders, with (n = 42) or without (n = 118) an autism diagnosis completed a battery of questionnaires. Using conditional stepwise binary logistic regression, we attempted to improve the autism spectrum quotient 10 item's (AQ-10) ability to discriminate between autistic and non-autistic women in a restrictive eating disorder sample. RESULTS: In a binary logistic regression model, the AQ-10 reliably discriminated between autistic and non-autistic women with an accuracy rate of 85% but had relatively low (69%) sensitivity, reflecting a high rate of false negatives. Adding three subscales to the model (Glasgow Sensory Questionnaire Auditory, Camouflaging Autistic Traits Questionnaire Compensation and Toronto Alexithymia Scale Externally Orientated Thinking) significantly improved its differentiating ability (accuracy = 88%, sensitivity = 76%, specificity = 92%). CONCLUSIONS: We have identified three subscales that, when used in combination with the AQ-10, may help clinicians understand the pattern of autistic traits in their patients with a restrictive eating disorder. This can inform clinical decisions about whether to refer for a full autism assessment and whether to adapt standard eating disorder treatments to accommodate autistic traits. Future studies are needed to test the model in samples where participants have undergone a full autism assessment.


Asunto(s)
Anorexia Nerviosa , Trastorno del Espectro Autista , Trastorno Autístico , Trastornos de Alimentación y de la Ingestión de Alimentos , Síntomas Afectivos , Anorexia Nerviosa/diagnóstico , Trastorno del Espectro Autista/diagnóstico , Trastornos de Alimentación y de la Ingestión de Alimentos/diagnóstico , Femenino , Humanos , Encuestas y Cuestionarios
7.
Psychol Med ; 50(13): 2240-2253, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-31530292

RESUMEN

BACKGROUND: Research identifies highly variable prevalence estimates for autism spectrum disorder (ASD) in children and adolescents with attention deficit hyperactivity disorder (ADHD), particularly between community and clinical samples, warranting quantitative meta-analyses to investigate the true prevalence of ASD in children and adolescents with ADHD. METHODS: Studies were identified through a systematic literature search of PsycINFO, MEDLINE and Web of Science through January 2018. Twenty-two publications met inclusion criteria (total N = 61 985). Two random effects meta-analyses were conducted: (1) to identify the proportion of children and adolescents with ADHD that met criteria for ASD; and (2) to compare the severity of dimensionally-measured ASD symptomology in children and adolescents with and without ADHD. RESULTS: The overall pooled effect for children and adolescents with ADHD who met threshold for ASD was 21%. There was no significant difference between community samples (19%) and clinical samples (24%) or between US studies v. those from other countries. Children and adolescents with ADHD had substantially more dimensionally-measured ASD traits compared with those who did not have ADHD (d = 1.23). CONCLUSION: The findings provide further evidence that ADHD and ASD are associated in nature. Clinical and research implications are discussed.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Trastorno del Espectro Autista/epidemiología , Adolescente , Niño , Humanos , Prevalencia
9.
J Child Psychol Psychiatry ; 56(4): 468-76, 2015 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-25132516

RESUMEN

BACKGROUND: Psychoeducation is an essential component of postdiagnostic care for people with ASD (autism spectrum disorder), but there is currently no evidence base for clinical practice. We designed, manualised and evaluated PEGASUS (psychoeducation group for autism spectrum understanding and support), a group psychoeducational programme aiming to enhance the self-awareness of young people with ASD by teaching them about their diagnosis. METHODS: This single-blind RCT (randomised control trial) involved 48 young people (9-14 years) with high-functioning ASD. Half were randomly assigned to PEGASUS, administered in six weekly group sessions, with the others receiving no additional intervention. ASD-related self-awareness, the primary outcome, was evaluated using the bespoke Autism Knowledge Quiz (AKQ). Secondary outcome measures included the Rosenberg Self-Esteem Scale. All measures were collected during home visits and scored by researchers blind to group assignment. The trial is registered on ClinicalTrials (NCT01187940, http://www.clinicaltrials.gov) and was funded by the Baily Thomas Charitable Trust. RESULTS: Bootstrap multiple regression showed ASD knowledge (ß = .29, p < .001, 95% CIs [0.13, 0.44]) and ASD self-awareness (ß = .42, p = .001, 95% CIs [0.17, 0.67]), measured by number of ASD-related personal strengths and difficulties listed by participants, increased for those who attended PEGASUS (n = 24) compared with controls (n = 24). There was no effect of PEGASUS on self-esteem by self-report (ß = .10, p = .404, 95% CIs [-0.14, 0.35]) or parent report (ß = .12, p = .324, 95% CIs [-0.12, 0.36]). CONCLUSIONS: After PEGASUS, participants had more general knowledge about ASD, and showed a greater awareness of their collection of unique strengths and difficulties associated with ASD. Psychoeducation did not lower self-esteem. This RCT provides initial evidence for PEGASUS's efficacy as a psychoeducation programme for people with ASD.


Asunto(s)
Trastorno del Espectro Autista/rehabilitación , Educación del Paciente como Asunto/métodos , Psicoterapia de Grupo/métodos , Autoevaluación (Psicología) , Adolescente , Niño , Femenino , Humanos , Masculino , Resultado del Tratamiento
10.
Neuropsychiatr Dis Treat ; 20: 505-514, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38469208

RESUMEN

Biases exist in the diagnostic process for autism spectrum disorder (henceforth "autism"), which result in some girls and women being diagnosed later or missed entirely. Current diagnostic tools may not capture the full range of behavioural presentations of autism, leading to under-identification. This review explores why these biases may occur, and how diagnostic procedures could be adapted to better identify autistic girls and women. We recommend that diagnostic assessments are adjusted to capture a broader range of behavioural exemplars of autism; that camouflaging of autistic traits is taken into account; and that care is taken to ensure co-occurring mental health conditions do not overshadow autism diagnosis. We offer recommendations, building on gold-standard diagnostic guidelines, for how diagnostic procedures can be improved for girls and women.

11.
Autism ; 28(10): 2623-2636, 2024 10.
Artículo en Inglés | MEDLINE | ID: mdl-38481018

RESUMEN

LAY ABSTRACT: Autistic people are more likely than non-autistic people to experience mental health difficulties. The Strengths and Difficulties Questionnaire is often used to screen for these difficulties and to otherwise make important decisions about mental health treatment and research in populations of autistic people. However, this study suggests that parent-reported Strengths and Difficulties Questionnaire scores may not be useful for comparing autistic and non-autistic adolescents at 11, 14 and 17 years old, as well as screening for mental health conditions in autistic adolescents. In addition, several items may be more likely to be endorsed by parents of autistic 17-year-olds than by parents of non-autistic 17-year-olds (and vice versa), which might suggest caution is needed when comparing groups on specific items.


Asunto(s)
Trastorno Autístico , Padres , Humanos , Adolescente , Encuestas y Cuestionarios , Masculino , Femenino , Padres/psicología , Niño , Trastorno Autístico/psicología , Psicometría , Reproducibilidad de los Resultados
12.
Artículo en Inglés | MEDLINE | ID: mdl-39367164

RESUMEN

RATIONALE: Anecdotal reports suggest that psychedelic drugs can improve psychological wellbeing and social engagement in autistic people. However, there are few contemporary studies on this topic. OBJECTIVES: To examine autistic participants' experiences with psychedelic drugs and the extent to which they attributed changes in mental health and social engagement to their most 'impactful' psychedelic experience. We also explored associations between these changes and mechanistically important variables (e.g., aspects of the acute psychedelic experience and changes in 'psychological flexibility'). METHODS: Self-selecting autistic participants (n = 233) with high autism quotient scores completed an online survey relating to their most impactful psychedelic experience. Questionnaires assessed the acute psychedelic experience and perceived psychedelic-induced changes in distress, social engagement and psychological flexibility, among other relevant variables. RESULTS: The majority of participants attributed reductions in psychological distress (82%) and social anxiety (78%) and increases in social engagement (70%) to their most 'impactful' psychedelic experience. A substantial minority (20%) also reported undesirable effects such as increases in anxiety with some describing their psychedelic experience as among the most negatively impactful experiences of their lives. The only substantial predictor of reductions in psychological distress was increased psychological flexibility. CONCLUSION: Autistic people attributed changes in mental health and social engagement to a single highly impactful psychedelic experience. The results and their implications are discussed with caution considering the use of a non-experimental design and biased sampling.

13.
BJPsych Open ; 10(4): e131, 2024 Jul 26.
Artículo en Inglés | MEDLINE | ID: mdl-39056242

RESUMEN

BACKGROUND: Autistic women are at high risk of developing restrictive eating disorders (REDs), such as anorexia nervosa. AIMS: This study provides an overview of the clinical characteristics of autistic women with REDs to (i) enhance understanding of increased risk, and (ii) support the identification of autistic women in eating disorder services. METHOD: We compared self-reported autistic and disordered eating characteristics of: autistic participants with REDs (Autism + REDs; n = 57); autistic participants without REDs (Autism; n = 69); and women with REDs who are not autistic (REDs; n = 80). We also included a group of women with high autistic traits (HATs) and REDs, but no formal autism diagnosis (HATs + REDs; n = 38). RESULTS: Autism + REDs participants scored similarly to Autism participants in terms of autistic characteristics and to REDs participants in terms of experiencing traditional disordered eating symptoms. Autism + REDs participants were distinguished from both groups by having more restricted and repetitive behaviours and autism-specific eating behaviours related to sensory processing, flexibility and social differences. HATs + REDs participants showed a similar pattern of scores to Autism + REDs participants, and both also presented with high levels of co-occurring mental health difficulties, particularly social anxiety. CONCLUSION: The presentation of autistic women with REDs is complex, including both traditional disordered eating symptoms and autism-related needs, as well as high levels of co-occurring mental health difficulties. In eating disorder services, the REDs presentation of autistic women and those with HATs should be formulated with reference to autism-specific eating behaviours and co-occurring difficulties. Treatment adaptations should be offered to accommodate autistic characteristics and related needs.

14.
Autism Res ; 17(5): 874-897, 2024 05.
Artículo en Inglés | MEDLINE | ID: mdl-38334318

RESUMEN

Autism can be considered both a personal and social identity. Identifying the factors contributing to positive Autistic identity development is crucial given the potential implications for mental health and wellbeing. In this systematic review, we aimed to synthesize quantitative literature on Autistic identity to identify the (individual and environmental) factors associated with Autistic identity, and to ascertain the relationship between Autistic identity and mental health and wellbeing. A total of 3,617 studies were screened and 20 met our inclusion criteria. Results indicated that people developed a more positive Autistic identity when receiving external autism acceptance and external support. The association between individual factors and Autistic identity were largely nonsignificant or inconclusive, highlighting the need for broad support that meets the needs of a range of Autistic people, rather than specific subgroups. Importantly, positive Autistic identity was associated with improved mental health and wellbeing. Peer support and/or self-directed support resources may be valuable mechanisms for supporting Autistic people to cultivate a positive Autistic identity. The evaluation of such support, including the long-term impacts on identity development, will be a critical avenue for future research.


Asunto(s)
Trastorno Autístico , Identificación Social , Humanos , Trastorno Autístico/psicología , Salud Mental , Autoimagen
15.
Autism ; 28(3): 627-643, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37300411

RESUMEN

LAY ABSTRACT: Over their lifetimes, many autistic people learn to camouflage (hide or mask) their autism-related differences to forge relationships, find work and live independently in largely non-autistic societies. Autistic adults have described camouflaging as a 'lifetime of conditioning . . . to act normal' involving 'years of effort', suggesting that camouflaging develops over an autistic person's lifetime and may start early on, in childhood or adolescence. Yet, we know very little about why and how autistic people start to camouflage, or why and how their camouflaging behaviours continue or change over time. We interviewed 11 Singaporean autistic adults (9 male, 2 female, 22-45 years old) who shared their camouflaging experiences. We found that autistic adults' earliest motivations to camouflage were largely related to the desire to fit in and connect with others. They also camouflaged to avoid difficult social experiences (such as being teased or bullied). Autistic adults shared that their camouflaging behaviours became more complex and that, for some, camouflaging became a part of their self-identity over time. Our findings suggest that society should not pathologise autistic differences, but instead accept and include autistic people, to reduce the pressure on autistic people to hide who they truly are.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Adulto , Adolescente , Humanos , Masculino , Femenino , Adulto Joven , Persona de Mediana Edad , Trastorno Autístico/psicología , Trastorno del Espectro Autista/psicología , Singapur , Conducta Social
16.
Lancet Reg Health Eur ; 41: 100907, 2024 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-39119101

RESUMEN

Background: Autistic people are disproportionately likely to experience premature mortality and most mental and physical health conditions. We measured the incidence of diagnosed conditions accounting for the most disability-adjusted life years in the UK population according to the Global Burden of Disease study (anxiety, depression, self-harm, harmful alcohol use, substance use, migraine, neck or back pain, and gynaecological conditions). Methods: Participants were aged 18 years or above and had an autism diagnosis recorded in the IQVIA Medical Research Database between 01/01/2000 and 16/01/2019. We included 15,675 autistic adults without intellectual disability, 6437 autistic adults with intellectual disability, and a comparison group matched (1:10) by age, sex, and primary care practice. We estimated crude incidences and incidence rate ratios (IRRs) adjusted for age and sex. Findings: Autistic adults without intellectual disability experienced a higher incidence (IRR, 95% CI) of self-harm (2.07, 1.79-2.40), anxiety (1.91, 1.76-2.06), depressive disorders (1.79, 1.67-1.92), and substance use (1.24, 1.02-1.51) relative to comparison participants. Incidences of harmful alcohol use (1.01, 0.85-1.18), migraine (0.99, 0.84-1.17), and gynaecological conditions (1.19, 0.95-1.49) did not differ. Neck or back pain incidence was lower (0.88, 0.82-0.95). Autistic adults with intellectual disability experienced a higher incidence of self-harm (2.08, 1.69-2.56). Incidences of anxiety (1.14, 1.00-1.30), gynaecological conditions (1.22, 0.93-1.62), and substance use (1.08, 0.80-1.47) did not differ, and lower incidences were found for depressive disorders (0.73, 0.64-0.83), harmful alcohol use (0.65, 0.50-0.84), migraine (0.55, 0.42-0.74), and neck or back pain (0.49, 0.44-0.55). Interpretation: Although our findings cannot be directly compared to previous prevalence studies, they contrast with the higher frequency of mental and physical health conditions in autistic adults reported in studies that directly assessed and/or surveyed autistic people about co-occurring conditions. The present findings may suggest under-diagnosis of common conditions in autistic people, particularly those with intellectual disability. Improved detection should be a clinical and policy priority to reduce health inequalities. Funding: Dunhill Medical Trust, Economic and Social Research Council, National Institute of Health and Care Research.

17.
Lancet Reg Health Eur ; 36: 100776, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38188276

RESUMEN

Background: Previous research has shown that people who have been diagnosed autistic are more likely to die prematurely than the general population. However, statistics on premature mortality in autistic people have often been misinterpreted. In this study we aimed to estimate the life expectancy and years of life lost experienced by autistic people living in the UK. Methods: We studied people in the IQVIA Medical Research Database with an autism diagnosis between January 1, 1989 and January 16, 2019. For each participant diagnosed autistic, we included ten comparison participants without an autism diagnosis, matched by age, sex, and primary care practice. We calculated age- and sex-standardised mortality ratios comparing people diagnosed autistic to the reference group. We used Poisson regression to estimate age-specific mortality rates, and life tables to estimate life expectancy at age 18 and years of life lost. We analysed the data separately by sex, and for people with and without a record of intellectual disability. We discuss the findings in the light of the prevalence of recorded diagnosis of autism in primary care compared to community estimates. Findings: From a cohort of nearly 10 million people, we identified 17,130 participants diagnosed autistic without an intellectual disability (matched with 171,300 comparison participants), and 6450 participants diagnosed autistic with an intellectual disability (matched with 64,500 comparison participants). The apparent estimates indicated that people diagnosed with autism but not intellectual disability had 1.71 (95% CI: 1.39-2.11) times the mortality rate of people without these diagnoses. People diagnosed with autism and intellectual disability had 2.83 (95% CI: 2.33-3.43) times the mortality rate of people without these diagnoses. Likewise, the apparent reduction in life expectancy for people diagnosed with autism but not intellectual disability was 6.14 years (95% CI: 2.84-9.07) for men and 6.45 years (95% CI: 1.37-11.58 years) for women. The apparent reduction in life expectancy for people diagnosed with autism and intellectual disability was 7.28 years (95% CI: 3.78-10.27) for men and 14.59 years (95% CI: 9.45-19.02 years) for women. However, these findings are likely to be subject to exposure misclassification biases: very few autistic adults and older-adults have been diagnosed, meaning that we could only study a fraction of the total autistic population. Those who have been diagnosed may well be those with greater support needs and more co-occurring health conditions than autistic people on average. Interpretation: The findings indicate that there is a group of autistic people who experience premature mortality, which is of significant concern. There is an urgent need for investigation into the reasons behind this. However, our estimates suggest that the widely reported statistic that autistic people live 16-years less on average is likely incorrect. Nine out of 10 autistic people may have been undiagnosed across the time-period studied. Hence, the results of our study do not generalise to all autistic people. Diagnosed autistic adults, and particularly older adults, are likely those with greater-than-average support needs. Therefore, we may have over-estimated the reduction in life expectancy experienced by autistic people on average. The larger reduction in life expectancy for women diagnosed with autism and intellectual disability vs. men may in part reflect disproportionate underdiagnosis of autism and/or intellectual disability in women. Funding: Dunhill Medical Trust, Medical Research Council, National Institute for Health and Care Research, and the Royal College of Psychiatrists.

18.
BJPsych Open ; 10(4): e128, 2024 Aug 01.
Artículo en Inglés | MEDLINE | ID: mdl-39087319

RESUMEN

BACKGROUND: Autistic people have a high likelihood of developing mental health difficulties but a low chance of receiving effective mental healthcare. Therefore, there is a need to identify and examine strategies to improve mental healthcare for autistic people. AIMS: To identify strategies that have been implemented to improve access, experiences of care and mental health outcomes for autistic adults, and to examine evidence on their acceptability, feasibility and effectiveness. METHOD: A co-produced systematic review was conducted. MEDLINE, PsycINFO, CINHAL, medRxiv and PsyArXiv were searched. We included all study designs reporting acceptability or feasibility outcomes and empirical quantitative study designs reporting effectiveness outcomes. Data were synthesised using a narrative approach. RESULTS: A total of 30 articles were identified. These included 16 studies of adapted mental health interventions, eight studies of service improvements and six studies of bespoke mental health interventions developed for autistic people. There was no conclusive evidence on effectiveness. However, most bespoke and adapted approaches appeared to be feasible and acceptable. Identified adaptations appeared to be acceptable and feasible, including increasing knowledge and detection of autism, providing environmental adjustments and communication accommodations, accommodating individual differences and modifying the structure and content of interventions. CONCLUSION: Many identified strategies are feasible and acceptable, and can be readily implemented in services with the potential to make mental healthcare more suitable for autistic people, but important research gaps remain. Future research should address these and investigate a co-produced package of service improvement measures.

19.
Autism ; 27(2): 402-414, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-35652328

RESUMEN

LAY ABSTRACT: Many autistic people use strategies that help them adapt in social situations and hide behaviours that may seem different to non-autistic individuals - this is called camouflaging. Camouflaging may help autistic people fit in socially; however, it might also lead to poorer well-being. It has been suggested that autistic females camouflage more than autistic males. This article explored differences between males and females who have an autism diagnosis, have characteristics of autism but no diagnosis and those with few autistic characteristics. It is important to include these groups as camouflaging may make it more difficult to get an autism diagnosis and therefore make it less likely a person will receive support. We found that autistic women camouflaged more than all other groups. The group with few autistic characteristics (males and females) camouflaged the least. Loneliness was found to be a possible reason for camouflaging for the diagnosed autistic group only. In terms of outcomes related to camouflaging, it was found that those who camouflaged most had a lower quality of life; this was true of all groups. This tells us that there may be different reasons to camouflage, and different outcomes related to camouflaging for those with many characteristics of autism (including those with a diagnosis), and those with few. It is important that clinicians, teachers, parents and other stakeholders are aware of the negative outcomes associated with camouflaging so that more support can be provided for those who need it.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Humanos , Masculino , Femenino , Adulto Joven , Trastorno Autístico/diagnóstico , Trastorno del Espectro Autista/diagnóstico , Caracteres Sexuales , Calidad de Vida , Conducta Social
20.
Autism ; 27(2): 552-564, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-35791666

RESUMEN

LAY ABSTRACT: The COVID-19 pandemic meant that a lot of healthcare services had to move online, such as to video-calls, or to telephone. However, not many studies have looked at how autistic adults feel about this kind of service delivery. It is important to know this, as autistic people may have poorer health than non-autistic people, and they may also struggle to access services more than non-autistic people. This study asked 11 autistic adults (aged 27-67 years), seven family members/carers (aged 44-75) reporting about autistic adults and six service providers about their experiences of accessing or providing a telehealth service. These experiences were collected through interviews, which were then analysed through thematic analysis. Two main themes were: technology aids communication and access - except when it doesn't, and in/flexibility. The themes pointed out some positive aspects of telehealth delivery, including improved communication and decreased stress. The themes also pointed out negative aspects of telehealth, such as increased rigidity of the healthcare system, amplifying pre-existing barriers. Because autistic people have many barriers to accessing healthcare, this study encourages researchers and healthcare providers to think about how such barriers could be addressed through telehealth, and about the possible limitations of telehealth for some autistic people.


Asunto(s)
Trastorno del Espectro Autista , COVID-19 , Telemedicina , Adulto , Humanos , Pandemias , Tecnología
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