Does camouflaging predict age at autism diagnosis? A comparison of autistic men and women.

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.

Autistic People and Moving Home: A Systematic Review.

Background: While many studies have examined where and with whom autistic people live, very few have looked at autistic people's experience of moving home. Choosing where to live, and being able to move residence, could be important for autonomy, and we therefore undertook a systematic review to identify studies about autistic adults' experience of moving home. Methods: We entered search terms relevant to autism and moving home into six databases and Google Scholar. After screening the titles and abstracts, we identified a final set of articles and screened the full text. We then checked the reference lists for potentially relevant articles; then, we conducted a search for articles that cited our final set of articles. Three raters assessed each included article for methodological quality. Results: The search strategy identified a total of 311 articles (initial search, ancestry searching, articles from other sources). After deduplication, we screened a total of 165 articles for eligibility. A final set of seven articles was identified. Our narrative synthesis of the articles suggests that both autistic people and the relatives of autistic people think living independently is a source of positive personal development. However, autistic people reported that poor employment prospects impacted on their financial independence and hence independent living. Parents highlighted concerns about their offspring's personal care, safety, and the difficulty of navigating the housing system for those autistic people with co-occurring intellectual disability. Conclusions: Taken together, our review suggests that autistic people and those who care for them have a positive view of independent living and are aware of the barriers to achieving this. Our review highlights a gap in the understanding of autistic adults' experience of moving home. We briefly describe our ongoing research project [the "Moving (as an) Autistic Person" project] exploring autistic people's experiences of moving house.

Why is this topic important?: Many research studies find that autistic people do not live independently­many autistic people live with their parents or in sheltered accommodation. As our knowledge about autistic people, and the diversity of their life experiences, increases, it is important to investigate a range of real-life transitions. So far, the transition to independent living has not been reviewed (specifically, the process of moving from one living place to another). What is the purpose of this article?: We reviewed published studies to try and find all the available studies that may have looked at the process of moving home for autistic people. What did the authors do?: We designed a search method to find all the articles that were relevant to this question. We searched six academic databases and used Google Scholar. What did you find about this topic?: We found that there were no studies which looked at the specific question of what autistic people experience when they move home. However, we did find some studies which looked at the benefits of living independently (with reports from autistic people and from the parents of autistic people). We also found one study which looked at the choices autistic people have in where, and with whom, they live. What do the authors recommend?: Based on the included studies, it does seem that autistic people may benefit from living independently. However, we do note that the issue of independent living cannot be examined without consideration of other factors, such as employment. Also, it is not universally the case that all autistic adults prefer, or will benefit from, living independently. How will these findings help autistic adults now or in the future?: We aim to use the findings of this review, alongside our ongoing mixed-methods study of autistic people's experiences, to design a tailored co-produced resource to help autistic people plan for moving home.

Improving Cognitive Behaviour Therapy for Autistic Individuals: A Delphi Survey with Practitioners.

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.

Sex differences in predictors and outcomes of camouflaging: Comparing diagnosed autistic, high autistic trait and low autistic trait young adults.

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.

Autistic and non-autistic young people's and caregivers' perspectives on COVID-19-related schooling changes and their impact on emotional well-being: An opportunity for change?

LAY ABSTRACT: Autistic young people experience poorer mental health and well-being compared to their non-autistic peers. Navigating the complex social, academic, procedural and sensory aspects of school may be particularly challenging for autistic young people and contribute to poorer mental well-being. The COVID-19 pandemic caused unprecedented school changes and provided a unique opportunity to gather caregiver's and young people's perspectives on the impact of school and pandemic-related school changes on the well-being of both autistic and non-autistic young people. We asked for the views of caregivers and young people aged 11-18 years gathered across three timepoints between May and December 2020. Their responses revealed both benefits and challenges associated with school changes. Insights into possible lessons from the pandemic and recommendations for more flexible, individualised and strengths-based educational practices are discussed.

A comparison of self-report and discrepancy measures of camouflaging: Exploring sex differences in diagnosed autistic versus high autistic trait young adults.

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.

Homelessness in autistic women: Defining the research agenda.

BACKGROUND: Current evidence suggests that autistic individuals are at high risk for becoming and remaining in a cycle of homelessness. Key risk factors for homelessness disproportionately affect autistic people; however, we have limited understanding of how to best support autistic individuals accessing services. This gap in the evidence base is particularly acute for autistic women. OBJECTIVE: As a first step to address this gap, we aimed to (1) map gaps in knowledge and practice; (2) identify priority areas for research and (3) develop recommendations for how to implement novel research and practice in this area. METHODS: We conducted a collaborative workshop with an interdisciplinary group of 26 stakeholders to address our aims. Stakeholders included autistic women with experience of homelessness, researchers, health professionals, NGO representatives, and service providers. RESULTS AND RECOMMENDATIONS: Two research priority areas were identified to map the prevalence and demographics of autistic women experiencing homelessness, and to delineate risk and protective factors for homelessness. Priority areas for improving provision of support included staff training to improve communication, awareness of autism and building trust with service providers, and recommendations for practical provision of support by services. CONCLUSIONS: Future research is critical to increase our knowledge of the pathways leading to homelessness for autistic women, and barriers to engaging with homelessness and social services. We need to use this knowledge to develop new ways of delivering targeted and inclusive support for autistic women, which could prevent or shorten periods of homelessness.

Telehealth Autism Diagnostic Assessments With Children, Young People, and Adults: Qualitative Interview Study With England-Wide Multidisciplinary Health Professionals.

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.

Barriers to Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review.

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.

The riverine bioreactor: An integrative perspective on biological decomposition of organic matter across riverine habitats.

Riverine ecosystems can be conceptualized as 'bioreactors' (the riverine bioreactor) which retain and decompose a wide range of organic substrates. The metabolic performance of the riverine bioreactor is linked to their community structure, the efficiency of energy transfer along food chains, and complex interactions among biotic and abiotic environmental factors. However, our understanding of the mechanistic functioning and capacity of the riverine bioreactor remains limited. We review the state of knowledge and outline major gaps in the understanding of biotic drivers of organic matter decomposition processes that occur in riverine ecosystems, across habitats, temporal dimensions, and latitudes influenced by climate change. We propose a novel, integrative analytical perspective to assess and predict decomposition processes in riverine ecosystems. We then use this model to analyse data to demonstrate that the size-spectra of a community can be used to predict decomposition rates by analysing an illustrative dataset. This modelling methodology allows comparison of the riverine bioreactor's performance across habitats and at a global scale. Our integrative analytical approach can be applied to advance understanding of the functioning and efficiency of the riverine bioreactor as hotspots of metabolic activity. Application of insights gained from such analyses could inform the development of strategies that promote the functioning of the riverine bioreactor across global ecosystems.

Quantifying compensatory strategies in adults with and without diagnosed autism.

BACKGROUND: There is growing recognition that some autistic people engage in 'compensation', showing few behavioural symptoms (e.g. neurotypical social skills), despite continuing to experience autism-related cognitive difficulties (e.g. difficulties in social cognition). One way this might be achieved is by individuals consciously employing 'compensatory strategies' during everyday social interaction. However, very little is currently known about the broad range of these strategies, their mechanisms and consequences for clinical presentation and diagnosis. METHODS: We aimed to measure compensatory strategies in autism for the first time. Using a novel checklist, we quantified self-reported social compensatory strategies in 117 adults (58 with autism, 59 without autism) and explored the relationships between compensation scores and autism diagnostic status, autistic traits, education level, sex and age at diagnosis. RESULTS: Higher compensation scores-representing a greater repertoire of compensatory strategies-were associated with having an autism diagnosis, more autistic traits and a higher education level. The link between autism diagnostic status and compensation scores was, however, explained by autistic traits and education level. Compensation scores were unrelated to sex or age at diagnosis. LIMITATIONS: Our sample was self-selected and predominantly comprised of intellectually able females; therefore, our findings may not generalise to the wider autistic population. CONCLUSIONS: Together, our findings suggest that many intellectually able adults, with and without a clinical diagnosis of autism, report using compensatory strategies to modify their social behaviour. We discuss the clinical utility of measuring self-reported compensation (e.g., using our checklist), with important implications for the accurate diagnosis and management of autism and related conditions.

A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD).

Autism spectrum disorder is thought to be a predominantly male diagnosis, however recent research suggests a smaller gender disparity in prevalence than previously assumed. Accounts of the female experience of autism are important to help reduce likely male-bias in current understanding and recognition of autism. Eighteen autistic females and four mothers of autistic females took part in discussions with a topic guide around diagnosis, impact and coping. A thematic analysis was conducted. Five themes were identified: fitting in the with the norm, potential obstacles for autistic women and girls, negative aspects of autism, the perspective of others, and positive aspects of having autism. We hope that greater understanding of the experiences of autistic females may lead to improved awareness, diagnosis and support for women and girls.

Ponding in intermittent streams: A refuge for lotic taxa and a habitat for newly colonising taxa?

Intermittent rivers are temporally dynamic, shifting between lotic, lentic (ponding) and dry habitat phases, yet almost all research effort has focussed on the lotic phase, with limited research attention on the lentic and dry phases. Information regarding the biological diversity of the lentic phase is vital to quantify the total aquatic biodiversity, their use as flow refugia, and the long-term conservation and management of intermittent rivers. In this study, we compared the diversity and composition of macroinvertebrates from perennial, intermittent and ponded sites in two intermittent rivers in the United Kingdom. We examined whether instream ponding provided refugia for lotic taxa and a habitat for newly colonising taxa. A total of 129 taxa (perennial - 86, intermittent - 82, ponding - 78) were recorded. Instream ponds were found to support heterogeneous communities compared to flowing sites. Twenty-two percent of taxa were recorded only from ponded sites, many of which were lentic specialists, while 38% of taxa persisted in instream ponds after flow had ceased. Results from this study highlight that instream ponds provide an important flow refuge for macroinvertebrates including rheophilic taxa, which move into instream ponds when channels become longitudinally disconnected, and makes a significant contribution to aquatic diversity in intermittent rivers, providing suitable habitat for newly colonising taxa. Aquatic diversity in intermittent rivers may have been underestimated historically, failing to acknowledge the ecological contribution of the lentic phase. Incorporating the ponding phase alongside the lotic phase will ensure the total aquatic biodiversity of intermittent rivers is quantified and effective biodiversity conservation and management strategies are employed.