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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.
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Complex post-traumatic stress disorder (CPTSD) was introduced in the International Classification of Diseases (ICD) 11 in 2013 to simplify diagnosis and increase clinical utility. Given the recent ICD-11 conceptualisation, there is no standard approach for its assessment, and a review of research is necessary. This systematic review focuses on ICD-11 CPTSD assessment in young people aged 7 to 17 and adults aged 18 and above, examining measures, differentiating features and clinical considerations. Data from five databases are reviewed using a narrative synthesis approach and the quality of evidence is assessed and discussed. A total of 36 studies involving 5901 participants recruited from clinical settings and 1458 professionals with CPTSD assessment experience were included. Studies predominantly focused on adults, and the most used measure for assessment was the International Trauma Questionnaire. Papers focusing on differentiating features highlighted increased symptom severity, impairment and difficulties in individuals with CPTSD, compared to those with PTSD across various characteristics in both young people and adults. This review also identified the importance of a sensitive clinical approach with adaptations based on culture and age. Although gold-standard recommendations cannot be made, this paper offers tentative clinical practice recommendations and considerations regarding ICD-11 CPTSD assessment.
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Clasificación Internacional de Enfermedades , Trastornos por Estrés Postraumático , Humanos , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/psicología , Trastornos por Estrés Postraumático/clasificación , Adolescente , Adulto , Adulto Joven , Niño , Femenino , MasculinoRESUMEN
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.
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BACKGROUND: Autistic adults are at increased risk of mental health difficulties; however Adult Mental Health Services (AMHS) often struggle to offer appropriate support to this group. Within England, Government initiatives, such as the 'Transforming Care' programme which included 'Building the Right Support' (NHS England, 2015) have promoted the need for AMHS to consider how they can better provide autism-informed support to autistic adults. AIMS/METHODS: Here, we describe the first two years of work of the Transforming Care in Autism (TCA) Team; a specialist service that supports autistic adults, without a moderate or severe intellectual disability or presenting significant risk to others, experiencing a mental health crisis. The service model is described, and descriptive data is presented over the two years of the service operation. RESULTS: Between February 2019 and February 2021, 110 referrals were received; 52 (47%) were accepted. Support offered to autistic adults included psychoeducation, psychological interventions, family-focused interventions, and consultation with professionals about specific individuals. Seventy autism training sessions were delivered to professionals working in medical health settings, AMHS, social care and residential services. CONCLUSIONS/IMPLICATIONS: Developing more autism-informed community and inpatient AMHS is vital for improving care. Further research about the experiences and needs of autistic adults using AMHS is needed, along with improved awareness of autism and provision of tailored intervention within these settings. LAY ABSTRACT: Autistic people have mental health problems more often than people who are not autistic. When autistic people need help from mental health services, often these services do not know how to help autistic people. The Government says mental health services must do more to help autistic people. In this paper we write about a new team, called the Transforming Care in Autism team. In its first two years the team was asked to help 110 people and worked with 52 of them. Help included talking to autistic people about how autism affects them and offering therapy. We also worked with families and professionals supporting autistic adults and offered 70 training sessions. More work is needed to make sure mental health services work well with autistic people. We also need to ask autistic people about their experiences of getting help from mental health services.
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Trastorno Autístico , Trastornos Generalizados del Desarrollo Infantil , Adulto , Niño , Humanos , Salud Mental , Trastorno Autístico/terapia , Hospitalización , InglaterraRESUMEN
Mental health difficulties commonly co-occur with autism, especially in autistic people accessing clinic services, impacting substantially on quality-of-life. Alexithymia (difficulty describing/identifying feelings) and sensory processing differences are prevalent traits in autism that have been associated with depression/anxiety in autistic community samples. However, it is important to better understand interrelationships between these traits in clinical populations to improve identification of service-user needs. In this study, 190 autistic adults (65.3% male), seen in a tertiary autism clinic, completed self-report measures of alexithymia (20-item Toronto Alexithymia Scale), sensory processing differences (Adolescent/Adult Sensory Profile) and depression/anxiety (Hospital Anxiety and Depression Scale). Multiple linear regression models and mediation analyses were used to examine associations between alexithymia, sensory processing differences, and depression/anxiety severity. Across the sample, 66.3% of individuals (N = 126) were classified as alexithymic (score ≥ 61). Total alexithymia and difficulty describing/identifying feelings were significantly associated with depression severity (ß = 0.30-0.38, highest p < 0.002), and difficulty identifying feelings was significantly associated with anxiety severity (ß = 0.36, p < 0.001). Sensory processing differences were also significantly associated with depression severity (ß = 0.29, p = 0.002) and anxiety severity across all models (ß = 0.34-0.48, highest p < 0.001) Finally, difficulty describing/identifying feelings partially mediated the relationships between sensory processing differences and both depression/anxiety severity. Overall, these results highlight that interventions adapted for and targeting emotional awareness and sensory-related uncertainty may improve mental health outcomes in autistic service-users.
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Some autistic adults experience repeated adverse events, including rejection, victimization and stigmatization. They also describe others being critical and negatively judging them, such as for how they socially interact or for expressing passion for particular interests. The impact of these adverse events can be substantial, including increasing vulnerability for poorer mental health, and contributing to development of negative self beliefs (such as "I am different" or "I do not fit in") and shame-based difficulties. Not all evidence-based psychological therapies are well-received by autistic people, or effective. Given high rates of self-harm and suicidality, finding acceptable and effective therapies for autistic adults is paramount. Here, writing as autistic and non-autistic clinicians and researchers, we outline the theoretical principles of compassion-focused theory and therapy (CFT). We propose that: (1) compassion-focused theory can provide a useful framework for conceptualizing shame-based difficulties some autistic adults experience; (2) CFT can be appropriate for addressing these; and (3) there is an impetus for practitioners to adopt compassion-focused approaches when supporting autistic adults.
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OBJECTIVES: Autism spectrum disorders and personality disorders are spectrum conditions with shared clinical features. Despite similarities, previous attempts to synthesise literature on co-existing prevalence and shared traits have employed a unidirectional focus, assessing personality characteristics of individuals with an autism spectrum disorder diagnosis. Here, we assess the prevalence of autism spectrum disorder diagnosis and/or traits among persons diagnosed with a personality disorder. METHODS: We systematically reviewed the English-language literature following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, according to a pre-registered protocol (PROSPERO: CRD 42021264106). Peer-reviewed quantitative studies reporting the prevalence of autism spectrum disorder diagnosis or traits in persons with an established personality disorder diagnosis were included. Studies were critically appraised using the Appraisal tool for Cross-Sectional Studies. RESULTS: Fifteen studies were identified, including 72,902 participants (median: 48, interquartile range: 30-77). Diagnoses included borderline, schizotypal and obsessive-compulsive personality disorders, and cohorts with unspecified personality disorder diagnoses. There was significant heterogeneity in diagnostic methodology and assessment tools used. We identified preliminary evidence of an increased prevalence of co-existing autism spectrum disorder diagnosis and traits among those diagnosed with a personality disorder, although significant limitations of the literature were identified. CONCLUSION: Our research suggests clinicians should consider conducting a careful developmental assessment when assessing service-users with possible or confirmed personality disorder. Future research directions may include larger studies featuring clinical control groups, an exploration of shared and differentiating behavioural-cognitive features of the two conditions, and investigation into potentially shared aetiological factors. Research investigating demographic factors that may contribute to potential diagnostic overshadowing would also be welcomed.
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Trastorno del Espectro Autista , Trastorno Obsesivo Compulsivo , Humanos , Adulto , Adolescente , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Prevalencia , Estudios Transversales , Trastornos de la Personalidad/diagnóstico , Trastornos de la Personalidad/epidemiologíaRESUMEN
LAY ABSTRACT: Eye Movement Desensitisation and Reprocessing (EMDR) is a psychological therapy that can help people process memories and distress about past events, so they have less impact on their daily lives. EMDR can be effective for treating symptoms of post-traumatic stress disorder, including nightmares and anxiety. Psychological therapies usually require adaptation so they are more accessible and effective for autistic people, but minimal research has focused on how best EMDR can be adapted. In this online survey study, we asked 103 EMDR therapists about barriers they think autistic people face when trying to have EMDR and what adaptations they use in their everyday practice. Four barriers were highlighted: client-related characteristics, therapist-related characteristics, differences in the therapeutic relationship and broader issues. Therapists identified a range of adaptations that can potentially be useful for autistic people, relating to being flexible, communicating clearly and having an awareness of individual differences. Many therapists emphasised the importance of not making assumptions about a person based on their autism diagnosis. Overall, the study findings suggest adaptations to EMDR are likely to be useful, but how relevant they are depends on each person.
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Trastorno del Espectro Autista , Trastorno Autístico , Desensibilización y Reprocesamiento del Movimiento Ocular , Trastornos por Estrés Postraumático , Humanos , Trastorno Autístico/terapia , Trastornos por Estrés Postraumático/psicología , Ansiedad , Resultado del TratamientoRESUMEN
There is emerging evidence of the effectiveness of individual and group cognitive behaviour therapy (CBT) for autistic individuals, in particular to address anxiety, obsessive compulsive disorder and depression. Many CBT studies have incorporated relatively stringent standards, with regards to participant inclusion/exclusion criteria, delivery of manualised approaches and assurance of therapist training and oversight. We know less about what happens in routine CBT practice and, importantly, how service provision can be improved for autistic individuals. The present study recruited 50 CBT practitioners to a three round Delphi survey. The aims were to elicit professionals' perspectives regarding barriers to the acceptability and effectiveness of CBT for autistic individuals, and to generate consensus, both about ways of enhancing service provision, as well as the autism-relevant training needs of CBT practitioners. Study findings indicated six barriers to accessible and effective CBT for autistic individuals, relating to service provision, practitioner-related factors, client-related factors, CBT-related factors, national guidelines, and systemic considerations. There was participant consensus that changes in five domains (specifically relating to process issues, service provision, practitioners, techniques and therapeutic approach) could improve the CBT care pathway. Consensus was generated about the training needs of CBT practitioners: training about autism, CBT-specific issues, co-occurring conditions and engagement, were deemed fundamental for enhancing practice. Participants also identified autism-relevant issues for clinical supervision. Further sustained research is needed to determine the effects of adapted service provision and improved practitioner knowledge and skills on the outcomes of autistic individuals who have CBT.
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Using a mixed methods design, this study aimed to examine the impact of the COVID-19 pandemic on autistic and non-autistic adults. We conducted an online survey with 196 autistic and 228 non-autistic adults from Belgium, the Netherlands and the United Kingdom focusing on their experiences during the first period of the pandemic. Our results indicate rather diverse experiences within the group of autistic participants across all domains of life. In comparison with non-autistic adults, autistic adults reported less negative impact on their social life and more negative impact on health and support services. In the autism group, stress was mainly related to changing and unclear measures. A wide range of coping strategies were described as helpful in reducing stress during the pandemic.
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Trastorno del Espectro Autista , Trastorno Autístico , COVID-19 , Humanos , Adulto , Pandemias , Adaptación PsicológicaRESUMEN
LAY ABSTRACT: More and more research shows us that autistic individuals are at risk of experiencing mental health problems in response to the COVID-19 pandemic. However, little is known about why this is the case. At two timepoints during the pandemic, we asked 149 autistic and 147 non-autistic adults about feelings of anxiety, depression, and stress, and about characteristics that may explain why some (autistic) people have a larger chance of developing anxiety and depression during this pandemic. In our study, autistic adults experienced more anxiety and depression than non-autistic adults. Across autistic and non-autistic individuals, the people who experienced more stress at timepoint 1 experienced more anxiety and depression 4 months later. This was especially the case for those individuals who use maladaptive coping styles, such as denial or venting, and for those who have difficulties dealing with uncertain situations. Our findings show the burden of the COVID-19 pandemic on the mental health of autistic adults. Interventions to support autistic adults during and after the pandemic are needed, and they may want to focus on the negative impact of stress and teach autistic (and non-autistic) adults more adaptive ways to cope with stressful circumstances.
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Trastorno del Espectro Autista , COVID-19 , Adulto , Humanos , Salud Mental , Pandemias , Incertidumbre , Adaptación Psicológica , Estrés Psicológico/epidemiologíaRESUMEN
OBJECTIVES: Eye Movement Desensitisation and Reprocessing (EMDR) is an evidence-based psychological therapy that targets distress associated with trauma and affective disturbance. Few studies have examined EMDR for autistic individuals who have co-occurring mental health conditions, but there is preliminary evidence of effectiveness. The current study explored EMDR therapists' experiences of working with autistic individuals, and adaptations incorporated into clinical practice to make this more accessible and effective. DESIGN: A qualitative interview design was used. Data were thematically analysed. METHOD: Twenty-three UK-based EMDR therapists attended one-off semi-structured qualitative interviews. RESULTS: Four main themes emerged: (1) the experience of being autistic; (2) factors around accessing EMDR; (3) adapting EMDR; and (4) supervision and support for EMDR therapists. Participants described offering a nuanced and tailored approach; one that retained the integral components of the eight phases of EMDR, while also being flexible and responsive to each client. CONCLUSIONS: Findings reinforce the importance of offering formulation-based psychological therapy that flexes in an evidence-informed way, according to the preferences and needs of autistic individuals. Further research should establish factors influencing accessibility and effectiveness of EMDR for autistic individuals, and the impact of autism-relevant training on the knowledge, skills and confidence of EMDR therapists and clinical supervisors working with this client group.
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Trastorno Autístico , Desensibilización y Reprocesamiento del Movimiento Ocular , Trastornos por Estrés Postraumático , Humanos , Trastorno Autístico/terapia , Movimientos Oculares , Investigación Cualitativa , Calidad de Vida , Trastornos por Estrés Postraumático/psicologíaRESUMEN
BACKGROUND: Autism spectrum disorder (hereafter, autism) is a common neurodevelopmental condition. Core traits can range from subtle to severe and fluctuate depending on context. Individuals can present for diagnostic assessments during childhood or adulthood. However, waiting times for assessment are typically lengthy, and many individuals wait months or even years to be seen. Traditionally, there has been a lack of standardization between services regarding how many and which multidisciplinary health professionals are involved in the assessment and the methods (diagnostic tools) that are used. The COVID-19 pandemic has affected routine service provision because of stay-at-home mandates and social distancing guidelines. Autism diagnostic services have had to adapt, such as by switching from conducting assessments in person to doing these fully via telehealth (defined as the use of remote technologies for the provision of health care) or using blended in-person or telehealth methods. OBJECTIVE: This study explored health professionals' experiences of and perspectives about conducting telehealth autism diagnostic assessments, including barriers and facilitators to this, during the COVID-19 pandemic; potential telehealth training and supervision needs of health professionals; how the quality and effectiveness of telehealth autism diagnostic services can be enhanced; and experiences of delivering postdiagnostic support remotely. METHODS: A total of 45 health professionals, working in varied settings across England, participated in one-off, in-depth semistructured qualitative interviews. These were conducted via videoconferencing or telephone. Altogether, participants represented 7 professional disciplines (psychiatry, medicine, psychology, speech and language therapy, occupational therapy, nursing, and social work). The data were then analyzed thematically. RESULTS: Thematic analysis indicated the following 7 themes: practicalities of telehealth, telehealth autism diagnostic assessments, diagnostic conclusions, clinical considerations, postdiagnostic support, future ways of working, and health professionals' experiences and needs. Overall, telehealth autism diagnostic assessments were deemed by many participants to be convenient, flexible, and efficient for some patients, families, and health professionals. However, not all patients could be assessed in this way, for example, because of digital poverty, complex clinical presentation, or concerns about risk and safeguarding. Working remotely encouraged innovation, including the development of novel assessment measures. However, some participants expressed significant concerns about the validity and reliability of remotely assessing social communication conditions. CONCLUSIONS: A shift to telehealth meant that autism diagnostic services remained operational during the COVID-19 pandemic. However, this method of working has potentially affected the parity of service, with people presenting with clinical complexity having to potentially wait longer to be seen or given a diagnostic opinion. There is also a lack of standardization in the provision of services. Further research should identify evidence-based ways of enhancing the timeliness, accessibility, and robustness of the autism diagnostic pathway, as well as the validity and reliability of telehealth methods.
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Previous research has indicated that autistic adults experience higher rates of co-occurring mental health difficulties and poorer quality of life (QoL) than their non-autistic peers. Little is known, however, about these aspects in older age or whether younger and older autistic adults experience similar patterns This cross-sectional study investigated potential age-related effects on autism symptoms, self-reported mental health, and QoL in younger and older autistic adults (n = 79, aged 19-71 years) compared to a non-autistic control group (n = 57) matched for gender, age and IQ. Results showed that autistic adults had higher levels of self-reported autism symptoms and poorer QoL than controls. There were no significant age effects on autism symptoms or on most self-rated mental health symptoms. However, significantly more autistic adults in the younger versus older group scored above the clinical threshold for anxiety, somatoform disorders and eating disorders. Older autistic adults rated social QoL as significantly better than younger autistic adults; there was no significant age difference in the control group. Self-reported QoL was best predicted by self-ratings of severity of depressive symptoms in both groups. Further research is needed to track autism and co-occurring mental health symptomatology across the lifespan, so that service provision can be tailored accordingly. LAY SUMMARY: Young autistic adults have reported more psychological difficulties and poorer quality of life (QoL) than the general population. We investigated whether these difficulties continue into older age. Autism symptoms and mental health problems were common in autistic adults, with no difference between age groups, except for anxiety, physical and eating problems. Although QoL was poorer in both younger and older autistic compared to non-autistic adults, older autistic adults reported better social QoL than those who were younger.
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Trastorno del Espectro Autista , Trastorno Autístico , Adulto , Envejecimiento , Trastorno del Espectro Autista/complicaciones , Trastorno del Espectro Autista/epidemiología , Trastorno del Espectro Autista/psicología , Trastorno Autístico/complicaciones , Trastorno Autístico/epidemiología , Trastorno Autístico/psicología , Estudios Transversales , Humanos , Salud Mental , Calidad de Vida/psicologíaRESUMEN
Background: Access to timely high quality autism diagnostic assessments has traditionally been patchy; many individuals wait months, if not years, for an appointment. The onset of the COVID-19 pandemic has likely impacted autism diagnostic services. This study investigated professionals' experiences of, and thoughts about: (1) how autism diagnostic assessments were conducted before the pandemic; (2) adaptations to service provision because of the pandemic; and (3) challenges, risks, advantages and opportunities associated with autism assessments conducted via online platforms (telehealth). Method: Fifty-two professionals, based in different autism diagnostic services and working with children, adolescents and/or adults, completed an online cross-sectional survey in August and September 2020. This comprised demographic questions (about professionals' roles and experiences), and closed and open questions about service provision and telehealth autism assessments. Results: There was substantial variation in how autism assessments were conducted prior to and during the pandemic; for example, in relation to the number of professionals involved in the assessment and types of structured, semi-structured and unstructured measures used to conduct this. Fifty-two percent of participants (n = 27) reported some service disruption (e.g., full closure, substantial reduction in provision, and/or pausing of in person appointments). Waiting times for assessment had become longer for 58% of services (n = 30), due to pandemic-related disruption. Six themes emerged from thematic analysis of open responses: (1) the autism diagnostic pathway, pre-pandemic; (2) initial impact of the pandemic on service delivery; (3) conducting autism assessments during the pandemic; (4) working remotely; (5) improving service design and delivery; and (6) post-diagnostic support. Views about the accessibility, validity, and reliability of conducting telehealth autism assessments were polarized. Some participants considered this efficient, flexible, and adequate; others viewed this as unethical and inappropriate. What constitutes good practice in telehealth autism assessments remains unclear, but there is a general openness to using this method (potentially in a hybrid telehealth-in person model), provided rigor and standardization are enhanced. Conclusions: The pandemic has potentially compounded existing bottlenecks to the autism diagnostic pathway. Future research should seek to improve timeliness, standardization, accessibility and robustness of this pathway, and the validity and reliability of telehealth autism assessments.
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LAY ABSTRACT: There has been growing interest in offending and contact with the criminal justice system (CJS) by people with autism spectrum disorder (ASD). However, it is not clear whether people with ASD offend more than those without ASD. Studies have started to look at whether there are particular offences people with ASD are more likely to commit and whether there are any factors that can affect whether someone comes into contact with the CJS as a potential suspect. This study looked at the patients who attended an ASD diagnostic service over a 17-year period to see the rate of contact with the CJS of those who were diagnosed with ASD and whether there were any particular factors that might increase the risk of CJS contact. Nearly a quarter of the ASD group had some contact with the CJS as a potential suspect. Factors that seemed to increase whether someone with ASD was more likely to have contact with the CJS were being male, being diagnosed with ADHD, and being diagnosed with psychosis. This study is one of the largest studies to investigate the rate of CJS contact as a potential suspect in a sample of adults with ASD in an attempt to give a clearer picture of what might influence someone with ASD to engage in offending behaviour in order to try to see what mental health services can offer to reduce the likelihood of someone with ASD coming into contact with the CJS, for example, treatment for another condition or support.
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Trastorno del Espectro Autista , Adulto , Humanos , Masculino , Femenino , Trastorno del Espectro Autista/epidemiología , Derecho Penal , Prevalencia , Caracteres Sexuales , Factores de RiesgoRESUMEN
There is increased recognition that women and girls with autism spectrum disorders (ASD) are underserved by the clinical criteria and processes required to receive a diagnosis. This mixed-methods systematic review aimed to identify key barriers to obtaining an ASD diagnosis in girls and young women under 21 years. Six themes were identified that focused on perceived gendered symptoms, namely behavioural problems, social and communication abilities, language, relationships, additional diagnoses/difficulties and restricted and repetitive behaviours and interests. Five themes were identified as (parental) perceived barriers to diagnosis, namely compensatory behaviours, parental concerns, others' perceptions, lack of information/resources and clinician bias. This review highlights the importance of enhancing widespread understanding and recognition of ASD presentation in females across development. PROSPERO Centre for Reviews and Dissemination (ID 2018 CRD42018087235). SUPPLEMENTARY INFORMATION: The online version of this article (10.1007/s40489-020-00225-8) contains supplementary material, which is available to authorized users.
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Shelter in place mandates due to the COVID-19 pandemic left caregivers to determine how to best meet the therapeutic requirements of their children with autism spectrum disorder (ASD). Understanding the challenges faced by families, and their experiences using telehealth for the first time, may help make services sustainable in future public health emergencies. A sample of 70 caregivers of people with ASD from across the US completed an anonymous online survey. Results indicate that impaired emotion regulation was a primary contributor of parent-reported stress for persons with ASD during the pandemic, while loss of established structure and routine contributed to parental stress. Nearly half the sample reported using telehealth for the first time. Many caregivers were appreciative that telehealth permitted continuation of services, but expressed concerns about limited effectiveness due in part to their children's social communication problems.
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Trastorno del Espectro Autista , COVID-19 , Padres/psicología , Resiliencia Psicológica , Estrés Psicológico/psicología , Adaptación Psicológica , Adolescente , Adulto , Trastorno Autístico , Cuidadores/psicología , Niño , Preescolar , Regulación Emocional , Femenino , Accesibilidad a los Servicios de Salud , Humanos , Masculino , Persona de Mediana Edad , SARS-CoV-2 , Telemedicina , Estados Unidos , Adulto JovenRESUMEN
Background: The COVID-19 (C-19) pandemic affects everyone. Autistic individuals may be at increased risk of experiencing difficulties coping with the impact of C-19 (e.g. due to unexpected changes to usual activities and routines, and the general sense of uncertainty). This preliminary study gathered the perspectives of health and social care professionals, and researchers, about: (1) vulnerability factors for coping with the pandemic; (2) the impact of the pandemic; (3) service provision during the pandemic; and (4) interventions to support reintegration during and post the pandemic. Method: We conducted an online survey, comprising Likert-scale and free text responses. Quantitative data were analysed descriptively, and qualitative data thematically. Results: Thirty-seven participants, working in clinical, education and academic settings with autistic individuals, completed the survey. C-19 had substantially impacted service provision, causing major disruption or loss of services. Thematic analysis indicated six overarching themes: (1) vulnerability factors for coping with C-19 and lockdown; (2) positive and negative impact of lockdown (for autistic individuals, families and professionals); (3) public health response to C-19; (4) service provision during the pandemic; (5) inequalities; and (6) looking to the future. Conclusions: Professionals, across disciplines and settings, must now work together with autistic individuals and their families, to understand the impact of these extraordinary circumstances and develop ways everyone can be supported more effectively.
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PURPOSE: Many individuals with autism experience social anxiety (SA), yet, to date, this has almost exclusively been investigated using quantitative research methods. We know very little about why individuals with autism perceive they develop SA, what they view the impact and consequences of symptoms to be, and which coping strategies they find helpful. METHODS: Using a qualitative study design, six men with autism (aged 23-52 years old) participated in individual semi-structured interviews. Data were transcribed verbatim and analysed using thematic analysis. RESULTS: Seven overarching themes were identified: (1) causal influences for SA; (2) anxiety-provoking social situations; (3) symptoms of SA; (4) chronicity; (5) coping; (6) impact; and (7) interventions. CONCLUSIONS: Further studies are needed to more fully establish why individuals with autism are vulnerable to developing SA, to inform development of targeted interventions.