Across research studies, autistic traits have consistently been found to predict the quality of life (QoL) of autistic adults. However, our understanding of their exact role remains limited, as autistic traits are typically examined as a unitary construct, with their multidimensional nature being largely overlooked. The present study examined the relative contribution of specific autistic trait domains – social anxiety, mentalising difficulties, and sensory reactivity – to QoL in autistic adults. Participants ( N = 300) completed clinically relevant measures of their autistic traits (i.e., RAADS-14) and QoL (i.e., WHOQOL-BREF and ASQoL), and provided socio-demographic details. Results showed that the consistent presence of social anxiety and mentalising difficulties across development, but not sensory reactivity, significantly predicted poorer QoL, even after accounting for one another and potential confounders. Comparing their relative importance, social anxiety emerged as the most dominant predictor of QoL amongst all variables, followed by mentalising difficulties. These findings provide evidence for the divergent contributions of autistic trait domains to QoL, adding nuance to our understanding of factors relating to autistic adults’ QoL. Overall, this study underscores the importance of considering individual differences in autistic trait profiles when designing individualised support programmes, such as prioritising attention to the presence of social anxiety and mentalising difficulties, to enhance the QoL of autistic adults. Lay Abstract Research consistently shows that autistic adults with more autistic traits generally experience poorer quality of life (QoL). However, our understanding of how they exactly link remains limited. This is because overall autistic trait scores are typically examined, even though autistic traits encompass different types of characteristics (e.g., social and non-social). Specifically, it is yet to be determined which particular autistic traits contribute most to QoL differences among autistic adults. To address this question, the present study examined the relative contributions of three specific domains of autistic traits – social anxiety, mentalising difficulties, and sensory reactivity – to QoL in 300 autistic adults, using self-report questionnaires. We found that the extent to which the three domains contributed to QoL differed. The consistent presence of social anxiety and mentalising difficulties across development, but not sensory reactivity, significantly predicted poorer QoL. Further to this, the presence of social anxiety, followed by mentalising difficulties, were the most important predictors of poorer QoL compared to all other variables, including being male, not being in a relationship, and having one or more co-occurring mental health conditions. These findings suggest that individual differences in specific autistic trait domains should be particularly attended to in the design of more tailored, personalised support programmes, given their important influence on one's satisfaction with life. Overall, this study demonstrates that it would be useful to maximise the clinical use of autistic trait measures, such as moving beyond the focus on overall scores, with an aim to effectively enhance the QoL of autistic adults.
Abstract Background Given the recent evidence on gender differences in the presentation of autism, there is an increasing concern that current tools for autism do not adequately capture traits more often found in women. If tools for autism measure autistic traits differently based on gender alone, their validity may be compromised as they may not be measuring the same construct across genders. Measurement invariance investigations of autism measures can help assess the validity of autism constructs for different genders. The aim of this systematic review is to identify and critically appraise the psychometric properties of all self-report tools for autism in adults that meet two criteria: (a) they have been published since or included in the NICE (2014) recommendations, and (b) they have undergone gender-related measurement invariance investigations as part of their validation process. Methods A search of electronic databases will be conducted from 2014 until the present using MEDLINE, Embase, and PsycINFO using predefined search terms to identify eligible studies. The search for grey literature will include sources such as OpenGrey, APA PsycEXTRA, and Scopus. Two reviewers will independently screen titles, abstracts, and full texts for eligibility. The references of included studies will be searched for additional records. The methodological quality of the studies will be evaluated using the COSMIN Risk of Bias checklist, while psychometric quality of findings will be assessed based on criteria for good measurement properties and ConPsy checklist. The quality of the total body of evidence will be appraised using the approach outlined in the modified GRADE guidelines. Discussion This systematic review will be among the first to assess the psychometric properties and gender-related measurement invariance of self-reported measures for autism in adults that were published since (or included in) NICE (2014) guidelines. The review will provide recommendations for the most suitable tool to assess for autism without gender bias. If no such measure is found, it will identify existing tools with promising psychometric properties that require further testing, or suggest developing a new measure. Systematic review registration The protocol has been registered at the International Prospective Register of Systematic Reviews (PROSPERO). The registration number is CRD42023429350.
Objective: Intolerance of uncertainty (IU), a negative cognitive, emotional, and behavioral response to uncertainties, is a transdiagnostic trait associated with a wide range of mental health conditions. To clarify which IU assessment tools are best used in clinical or nonclinical populations, the present study aimed to systematically identify all IU measures and synthesis the psychometric properties of IU questionnaires. Method: Six databases including PubMed, Medline, Embase, PsycInfo, Web of Science, and Scopus were searched in two stages. All the evidence of psychometric properties were extracted, assessed, and summarized following the adapted COnsensus-based Standards for the selection of health Measurement INstruments guidelines by two independent reviewers. Results: Forty-seven questionnaire names relevant to the concepts of IU or uncertainty were identified in Stage 1. Fifty-four IU-relevant articles and seven IU questionnaires were identified in Stage 2. There was no best measure for IU that reported the best psychometric properties with the best quality measure. Most of the IU questionnaires only reported sufficient internal consistency and convergent validity with good quality. Discussion: Recommendations for the choice of IU questionnaire to be used in the general population, specific populations, different age groups, and assessing distinct aspects of IU are given. Future research could develop or adapt IU measures to address the issues around the psychometric properties raised in this study.
Previous research has indicated that autistic individuals report lower quality of life (QoL) than non-autistic people. It is unclear whether it is the autism traits themselves or co-occurring thinking styles or mental health difficulties that most impair QoL. This study tested a hypothesised model to explore how ‘intolerance of uncertainty’ (IU), alexithymia (difficulty in identifying and describing own emotions), and anxiety play into the association between autistic traits and QoL. Online survey data were analysed from 116 autistic and 51 non-autistic adults who completed six standardised questionnaires measuring autistic traits, alexithymia, IU, anxiety and QoL (physical health, psychological health, social relations, and environment domains). The autistic group reported higher scores for alexithymia, IU and anxiety, and lower scores for QoL across domains, compared to the non-autistic group. Across the entire sample, autistic traits, alexithymia, IU and anxiety were positively correlated with one another, and negatively related to the four domains of QoL. Finally, IU and anxiety partially serially mediated the pathways from autistic traits to physical health and environment domains of QoL, and fully mediated the pathways from autistic traits to psychological health and social relations domains of QoL, across the full sample. The lower QoL experienced by autistic people may be explained in part by the mediating effect of both IU and anxiety (but not alexithymia). This study highlights the need for evidence-based interventions to address both IU and anxiety to improve QoL for autistic people/those with high levels of autistic traits.
In electroencephalographic (EEG) data, power-frequency slope exponents (1/ f β ) can provide non-invasive markers of in vivo neural activity excitation-inhibition (E:I) balance. E:I balance may be altered in neurodevelopmental conditions; hence, understanding how 1/ f β evolves across infancy/childhood has implications for developing early assessments/interventions. This systematic review (PROSPERO-ID: CRD42023363294) explored the early maturation (0-26yrs) of resting-state EEG 1/ f measures (aperiodic [AE], power law [PLE] and Hurst [HE] exponents), including studies containing ≥1 1/ f measures and ≥10 typically developing participants. Five databases (including Embase and Scopus) were searched during March 2023. Forty-two studies were identified (N participants =3478). Risk of bias was assessed using the Quality Assessment with Diverse Studies tool. Narrative synthesis of HE data suggests non-stationary EEG activity occurs throughout development. Age-related trends were complex, with rapid decreases in AEs during infancy and heterogenous changes thereafter. Regionally, AE maxima shifted developmentally, potentially reflecting spatial trends in maturing brain connectivity. This work highlights the importance of further characterising the development of 1/ f measures to better understand how E:I balance shapes brain and cognitive development.
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.
Autistic people often have an atypical profile of abilities: while excelling in some structured paradigms, many report difficulties with making real-life decisions. To test whether decision-making in autism is different from in typically developing controls, we reviewed 104 studies that compared decision-making performance between autistic and comparison participants (N = 2712 autistic and N = 3189 comparison participants) between 1998 and 2022. Our searches revealed four main decision-making paradigms that are widely used in the field of decision neuroscience: perceptual discrimination, reward learning, metacognition and value-based decision-making paradigm. Our synthesis highlights that perceptual processing and reward learning were similar between autistic and comparison participants, whereas value-based decision-making and metacognitive accuracy were often different between groups. Furthermore, decision-making differences were most pronounced when the autistic participant was explicitly probed to report on an internal belief, while implicit markers of the same decision (e.g. error-related response times) were usually not different. Our findings provide evidence in favour of a metacognitive explanation of decision-making atypicalities in autism. Lay summary Many autistic people report difficulties with real-life decision-making. However, when doing decision-making tests in laboratory experiments, autistic people often perform as well or better than non-autistic people. We review previously published studies on autistic people's decision-making, across different types of tests, to understand what type of decision-making is more challenging. To do this, we searched four databases of research papers. We found 104 studies that tested, in total, 2712 autistic and 3189 comparison participants on different decision-making tasks. We found that there were four categories of decision-making tests that were used in these experiments: perceptual (e.g. deciding which image has the most dots); reward learning (e.g. learning which deck of cards gives the best reward); metacognition (e.g. knowing how well you perform or what you want); and value-based (e.g. making a decision based on a choice between two outcomes that differ in value to you). Overall, these studies suggest that autistic and comparison participants tend to perform similarly well at perceptual and reward-learning decisions. However, autistic participants tended to decide differently from comparison participants on metacognition and value-based paradigms. This suggests that autistic people might differ from typically developing controls in how they evaluate their own performance and in how they make decisions based on weighing up the subjective value of two different options. We suggest these reflect more general differences in metacognition, thinking about thinking, in autism.
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.
LAY ABSTRACT:An interesting recent study found that people who learned they were autistic at a younger age felt more positive about their lives (i.e., had better quality of life) than those who learned at an older age. However, this study has some limitations: (a) the study only involved a fairly small group of university students, (b) whether 'learning one is autistic' referred to learning about one's diagnosis or receiving one's diagnosis was unclear, (c) the influence of other factors on the link between age of learning one is autistic and quality of life was not considered, and (d) the assessment of different areas of quality of life was limited. Addressing these limitations, we re-examined whether the age at which one learns they are autistic relates to quality of life in adulthood. Contrary to the previous study, we found the age at which one learns about their autism does not have a significantly independent impact on their quality of life as an adult. Rather, other factors (e.g., autistic traits, sex, and additional mental health conditions) may have a greater impact. Given our participant sample was larger and more diverse in age and education level compared to previous research, this finding is likely to be more applicable to autistic adults from different backgrounds. Importantly, however, we are not suggesting that individuals should be made aware of their diagnosis later than sooner. Getting a timely diagnosis remains crucial for autistic people and their families to access appropriate support.
Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people. Lay abstract Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people's views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person's physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.
BackgroundAccess 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). MethodFifty-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. ResultsThere 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. ConclusionsThe 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.
Background: Measurement of the Quality of Life (QoL) of autistic adults is receiving increasing empirical attention. The World Health Organisation (WHO) QoL measure (WHOQoL-BREF) has been utilised in several studies. Autistic adults report significantly lower QoL compared to neurotypical adults across several domains. However, no studies have investigated the suitability of WHOQoL-BREF as a tool to measure the QoL of autistic adults. Methods: This study explored the validity and reliability of WHOQoL-BREF with a mixed methods approach. Quantitatively, structural validity was explored by an exploratory factor analysis of WHOQoL-BREF data from 352 autistic adults aged 18-80 years. Qualitatively, four discussion groups (n=20 autistic people) were conducted to explore the face validity of the items of WHOQoL-BREF. Results: The five factor structure was conceptually similar to the WHO formulation of QoL, with adequate to good internal consistency of domains; however, some items loaded in an unexpected way. The reasons for these unexpected loadings were explored in the transcripts from the discussion groups. Conclusions: The findings suggest that the WHOQoL-BREF has acceptable validity and reliability for use with autistic adults; however caution is needed when interpreting data from the social domain and some other items
Background:There is a paucity of research involving older autistic people, as highlighted in a number of systematic reviews. However, it is less clear whether this is changing, and what the trends might be in research on autism in later life.Methods:We conducted a broad review of the literature by examining the number of results from a search in three databases (PubMed, Embase, PsycINFO) across four age groups: childhood, adolescence, adulthood, and older age. We also examined the abstracts of all the included articles for the older age group and categorized them under broad themes.Results:Our database search identified 145 unique articles on autism in older age, with an additional 67 found by the authors (hence, the total number of articles in this review is 212). Since 2012, we found a 392% increase in research with older autistic people, versus 196% increase for childhood/early life, 253% for adolescence, and 264% for adult research. We identify 2012 as a point at which, year-on-year, older age autism research started increasing, with the most commonly researched areas being cognition, the brain, and genetics. However, older adult research only accounted for 0.4% of published autism studies over the past decade.Conclusions:This increase reflects a positive change in the research landscape, although research with children continues to dominate. We also note the difficulty of identifying papers relevant to older age autism research, and propose that a new keyword could be created to increase the visibility and accessibility of research in this steadily growing area.
Background: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes. Aim: To establish the views of autistic people towards a primary care health check for autistic people. Design & setting: Cross-sectional questionnaire study in England and Wales. Method: A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire. Results: Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician’s autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible. Conclusion: Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults.
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.
Background:In the United Kingdom, we have experienced many changes to our daily lives as a result of COVID-19. Autistic and other neurodivergent (ND, e.g., those with attention-deficit hyperactivity disorder) adults may be more vulnerable to negative effects of the pandemic due to pre-existing mental health disparities and unmet support needs. Furthermore, there is little research, either pandemic related or otherwise, which considers how the experiences of autistic adults with additional intersecting ND identities might differ from those without. Methods:We collected data from an online survey during June 2020 to September 2020 to explore the psychological impact of the coronavirus pandemic on U.K. adults (N = 286, age 18-72 years). Participants included neurotypical (NT) adults (N = 98), autistic adults (N = 73), other ND adults (N = 53), as well as autistic adults with an additional intersecting ND identity (N = 63). We measured and compared levels of quality of life (QoL), depression, anxiety, and loneliness across groups as well as perceived change in these as a result of the pandemic. Results:Autistic adults, with and without additional ND identities, had consistently low QoL and high anxiety, depression, and loneliness compared with NT adults. We found no differences in these areas between autistic adults with and without additional intersecting ND identities. In some areas, non-autistic ND participants were also doing poorly compared with their NT peers. Many participants felt that their QoL, mental health, and loneliness had worsened due to the pandemic, and this was largely similar across groups. Conclusions:These results highlight that COVID-19 may have led to increased need and demand for mental health services across the U.K. adult population. Both autistic and ND adults may be in particular need of increased (and improved) mental health and well-being support. This is likely because of pre-existing differences in mental health and well-being as well as individuals facing further difficulties as a result of the pandemic.
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.
Autism in AdulthoodVol. 4, No. 2 Letters to the EditorFree AccessResponse to Rose and Michael; doi: 10.1089/aut.2022.0023David Mason, Gavin Stewart, Simone Capp, and Francesca HappéDavid MasonAddress correspondence to: David Mason, MSc, Institute of Psychiatry, Psychology and Neuroscience, King's College London, 16 de Crespigny Way, SE5 8AF London, United Kingdom E-mail Address: Email:E-mail Address: [email protected]https://orcid.org/0000-0002-1382-4688Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.Search for more papers by this author, Gavin StewartInstitute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.Search for more papers by this author, Simone Capphttps://orcid.org/0000-0001-8702-6921Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.Search for more papers by this author, and Francesca HappéInstitute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.Search for more papers by this authorPublished Online:9 Jun 2022https://doi.org/10.1089/aut.2022.0033AboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail FiguresReferencesRelatedDetails Volume 4Issue 2Jun 2022 InformationCopyright 2022, Mary Ann Liebert, Inc., publishersTo cite this article:David Mason, Gavin Stewart, Simone Capp, and Francesca Happé.Response to Rose and Michael; doi: 10.1089/aut.2022.0023.Autism in Adulthood.Jun 2022.176-176.http://doi.org/10.1089/aut.2022.0033Published in Volume: 4 Issue 2: June 9, 2022Online Ahead of Print:May 12, 2022PDF download
BACKGROUND:Autistic people tend to report poorer Quality of Life (QOL) than comparison groups, though some studies do report more optimistic findings. Higher autistic traits are also related to poorer QOL. However, the role of alexithymia in this relationship has not been explored. METHOD:A total of 163 participants (N = 53 autistic and N = 111 comparison) consented to take part; however, 30 participants were excluded due to missing data (who did not differ from those who were retained on age, gender, education, employment, or living status), leaving a final sample of 133 (N = 42 Autistic and 91 Comparison participants). Demographic information (including age, gender) was collected, alongside self-report measures of autistic traits, mental health, alexithymia, and QOL. We estimated regression models based on pre-registered analysis, and we conducted exploratory network analyses. RESULTS:Alexithymic traits did not predict QOL when controlling for covariates. Depression significantly predicted Physical, Psychological, and Social QOL. When examining the impact of just alexithymic traits and autistic traits, both were significantly associated with Physical and Psychological QOL. For participants with a low depression score, the correlation between alexithymia and QOL was strong; suggesting that depression occludes the association between alexithymia and QOL. Network analyses suggested that depression and anxiety exert direct effects on Physical and Psychological QOL, whereas alexithymia scores may influence Physical QOL via autistic traits. CONCLUSION:In sum, depression is a pervasive negative predictor of multiple QOL domains. The role of alexithymia in predicting QOL dimensionally and categorically was not ruled out, given our exploratory analyses, we suggest that interventions which target alexithymia may positively impact QOL for those who score low on depressive symptoms.
Background: There is a paucity of research involving older autistic people, as highlighted in a number of systematic reviews. However, it is less clear whether this is changing, and what the trends might be in research on autism in later life.Methods: We conducted a broad review of the literature by examining the number of results from a search in three databases (PubMed, Embase, PsycINFO) across four age groups: childhood, adolescence, adulthood, and older age. We also examined the abstracts of all the included articles for the older age group and categorized them under broad themes.Results: Our database search identified 145 unique articles on autism in older age, with an additional 67 found by the authors (hence, the total number of articles in this review is 212). Since 2012, we found a 392% increase in research with older autistic people, versus 196% increase for childhood/early life, 253% for adolescence, and 264% for adult research. We identify 2012 as a point at which, year-on-year, older age autism research started increasing, with the most commonly researched areas being cognition, the brain, and genetics. However, older adult research only accounted for 0.4% of published autism studies over the past decade.Conclusions: This increase reflects a positive change in the research landscape, although research with children continues to dominate. We also note the lack of unique search terms for autism aging research and propose the portmanteau term "Gerontautism" as an additional keyword to clearly identify research in this steadily growing area. Community brief Why is this topic important?Autistic children grow into autistic adults, and autistic adults grow old. However, there is very little research about older autistic people. This is important so we know how to support older autistic people. What is the purpose of this article?We wanted to examine how autism research activity has changed over time with respect to four life stages: infancy, childhood and adolescence, adulthood, and older age. We then more closely looked at older age autism research to point out important gaps where more research is needed. What did the authors do?We conducted a broad review of the literature on autism and described what life stages are studied in published research. We looked at how the amount of research on different life stages has changed over time. We further examined studies focused on older age and summarized the topics covered. What did you find about this topic?Our review estimates that only 0.4% of autism-related publications over the past decade are about older autistic people. We identify 2012 as a turning point since when the number of studies has markedly increased year-on-year. Encouragingly, the percentage increase in autism research over the past decade is greater for older age research (392% rise) than childhood/early life (196%), adolescence (253%), or adulthood research (264%). What do the authors recommend?We suggest that there are many research areas that need addressing. Specifically, more research is needed on social isolation and the practicalities of living arrangements for older autistic people, as well as more studies including older autistic adults with intellectual disability. How will these findings help autistic adults now or in the future?We do not think that our findings will immediately benefit the lives of autistic people. However, we do hope to draw attention to topics where research is needed to improve the lives of autistic older people. We also suggest a new keyword (gerontautism) that researchers could include in their articles to help autistic people and those interested in autism and aging find relevant writings.