RESUMEN

Background: Receiving an autism diagnosis in adulthood often leads to improved self-understanding and deeper self-reflection, which can have major impacts on people's well-being and sense of identity. However, autism diagnosis also exposes individuals to societal stigma, which may become internalized over time. This study aimed to explore relationships between psychological and service-related impacts of diagnosis and internalized stigma using mixed methods. Methods: One hundred forty-three autistic adults completed an online survey involving impact of diagnosis domains of Self-Understanding, Well-being, Clinician Support, and Service Access, internalized stigma, and open-ended questions on beliefs about autism diagnosis. Results: On average, participants reported mild levels of internalized stigma and positive impact of diagnosis in all domains except Service Access. Older age at diagnosis was positively associated with Clinician Support only. The path analysis model showed positive relationships between impact of diagnosis domains, with Self-Understanding having a positive effect on Well-being via lowered internalized stigma. We developed four themes of Continuity and Acceptance, Late Diagnosis as Regret and Freedom, Coming to Terms with Being Autistic, and Stigma Resistance from qualitative data. Conclusions: Self-understanding protects against the development of internalized autism stigma. Diagnosticians and service providers play an important role in improving self-understanding and well-being in autistic adults. More research is needed to understand the role of age at diagnosis and mechanisms behind positive identity development after autism diagnosis.

Why is this an important issue?: Receiving an autism diagnosis in adulthood can help people understand themselves better. This can help them feel better too. Autistic adults' experiences during diagnosis and their experience with support services after diagnosis might also affect how they think and feel about themselves. There are many negative beliefs about autism in society. Some autistic people might think more negatively about themselves because of these beliefs. What was the purpose of this study?: This study tries to understand relationships between the impact of autism diagnosis and negative beliefs about autism in autistic adults. We also wanted to know if age at diagnosis is related to these factors. What did the researcher do?: One hundred forty-five autistic adults filled in an online survey. We asked questions about the impact of autism diagnosis on four aspects: how they understand themselves, their well-being, experiences with the professional who gave the diagnosis, and support services after diagnosis. We also asked questions about autistic adults' negative beliefs about autism. We used the answers to these questions to test a model of how we think these factors might affect each other: good experiences with the professional who gave the diagnosis help with self-understanding and getting support services. Better self-understanding helps autistic adults think less negatively about autism. Better self-understanding, less negative thinking about autism, and better support services all help improve well-being after diagnosis.We asked autistic adults some general questions about the effect of autism diagnosis on their lives. We asked autistic adults whether they think being diagnosed at an older or younger age made a difference. We also asked autistic adults about negative beliefs that some autistic people might have about their autism. We then read these answers and made a list of the important and common ideas in people's answers. What were the results of the study?: In general, autism diagnosis improved autistic adults' self-understanding and well-being. Most autistic adults had good experiences with the diagnosing professional but did not have good support services after diagnosis. On average, autistic adults had a small amount of negative beliefs about autism. People diagnosed at older ages had better support from the health professional who diagnosed them. We did not find any other differences between people diagnosed at different ages. We successfully tested our model of relationships between self-understanding, well-being, experiences with the diagnosing professional, experience of support services, and negative beliefs about autism.Autistic adults said getting the diagnosis did not change who they are. It helped them understand and accept themselves. Some late-diagnosed autistic adults wished they were diagnosed earlier. Others said being diagnosed younger might make you think less of yourself because there was less autism acceptance in society at that time. Both early-diagnosed and late-diagnosed autistic adults said growing older helped them understand what it means to be autistic. Autistic adults also talked about autistic and non-autistic people's negative beliefs about autism. Some autistic adults said that negative beliefs are caused by society not being accepting enough, not because autism itself is bad. This thinking helps autistic adults think more positively about autism. What do these findings add to what was already known?: This is the first study to measure and develop a model of the relationships between impacts of diagnosis and negative beliefs about autism in autistic adults. What are potential weaknesses in this study?: Most people who did our survey were diagnosed as teens and adults. It was hard to measure the effects of age at autism diagnosis because we did not have enough participants diagnosed at young ages. The people who did our survey were mostly female, White, spoke English only, and did not have intellectual disability. This means that the people in our study are not a good representation of all autistic adults in Australia. The questions we used to measure negative beliefs about autism were originally made for people with mental illness. There might be negative beliefs specific to autism that we did not measure. How will these findings help autistic adults now or in the future?: Our findings tell professionals who diagnose or support autistic adults that it is important to help autistic adults understand what it means to be autistic in a positive way. This will help autistic adults form more positive beliefs about autism and live happier lives.

RESUMEN

No tools quantify the experience, psychological, and practical impact of receiving a diagnosis from a non-deficit perspective. Autism is increasingly late diagnosed in adulthood. The Impact of Diagnosis Scale (IODS) was initially developed for borderline personality disorder. We aimed to develop a revised version suitable for autistic adults and potentially other diagnostic groups. Following a trial of a preliminary revision, the researchers and autistic research advisors co-produced an expanded pool of 46 items, scored on 7-point Likert-type scale, within 6 hypothesized domains. Scale reduction processes were applied to data from 125 formally diagnosed autistic adults. Following iterative rounds of factor analysis using maximum likelihood estimation with Promax rotation, 22 items were retained across 4 domains to comprise the IODS-R. The IODS-R adds new understanding to the experience of receiving an autism diagnosis in adulthood. It may be useful for evaluating diagnostic services and other diagnostic groups.

RESUMEN

The stress literature suggests that coping strategies are implicated in mental health outcomes. However, the longitudinal relationship between coping strategies and mental health in the autistic adult population has not yet been examined. This 2-year longitudinal study examined the predictive role of both baseline and change in coping strategy use over time (i.e., an increase or decrease) on anxiety, depression, and well-being after 2-years in 87 autistic adults aged 16 to 80 years. Controlling for baseline mental health, both baseline and increase in disengagement coping strategies (e.g., denial, self-blame) predicted higher anxiety and depression, and lower well-being, while an increase in engagement coping strategies (e.g., problem solving, acceptance) predicted higher well-being. These findings extend the current coping literature in autistic adults, offering insight into mental health support and intervention options.

RESUMEN

Adulthood autism diagnosis has become increasingly common, but little is known about post-diagnosis support experiences and needs. We interviewed 19 autistic adults and 4 support persons on experiences of formal and informal post-diagnosis support. Reflexive thematic analysis was used to identify themes. Participants reported difficulties accessing suitable formal support, especially regarding education and employment. Informal support was helpful but created challenges in the relationships between autistic adults and support persons. For autistic adults, support from autistic peers fostered belonging and self-acceptance. We also identified complex interactions between adults' post-diagnosis identity development and support experiences as they resolved the dilemma between self-acceptance and a desire to change. Findings have important implications for services working with autistic adults and their families.

RESUMEN

This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.

RESUMEN

Compared to the general population, mental health difficulties are commonly reported in autistic adults. However, the ways in which coping strategies are associated with mental health and well-being in this population remain unknown. Further, we do not know if, and if so, how these associations might differ to that of non-autistic adults. In this study, we hypothesized that in both our autistic (N = 255) and non-autistic (N = 165) adult samples, disengagement coping strategies (e.g., denial) would relate to poorer mental health and well-being, while engagement coping strategies (e.g., problem solving) would relate to better mental health and well-being. Regression analyses revealed that higher use of disengagement coping strategies was significantly associated with higher levels of anxiety and depression, and lower levels of well-being in both samples. In contrast, increased use of engagement coping strategies was associated with better well-being, but only in the autistic sample. Our results contribute to the characterization of negative and positive mental health outcomes in autistic adults from a coping perspective, with potential to offer novel information regarding coping strategies to consider when addressing support options for mental health difficulties in the autistic adult population. LAY SUMMARY: Mental health conditions (such as anxiety and depression) and poor well-being are commonly reported in autistic adults. Research suggests that how one copes with stress is associated with one's mental health and well-being. However, we have little information about how coping strategies relate to the mental health of autistic adults, and whether this might be different in non-autistic adults. In this study, we examined the relationship between coping strategies and mental health in a large group of autistic individuals aged 15-80 years. We then compared this with similar aged non-autistic individuals. We found that in both the autistic and non-autistic individuals, using more disengagement coping strategies (such as being in denial, blaming oneself) was related to poorer mental health and well-being. Additionally, using more engagement coping strategies (such as problem solving, acceptance) was related to better mental health and well-being, but only in the autistic individuals. These results can help inform support services, as they highlight the coping strategies that may need to be focused on (i.e., developing engagement coping strategies and reducing disengagement coping strategies) in order to better support the mental health of autistic individuals.

Asunto(s)

RESUMEN

As autism is an invisible and often stigmatised condition, disclosing the diagnosis may lead to both support and/or discrimination. This mixed-methods questionnaire study examined autistic adults' experiences of disclosure in various contexts. The sample consisted of 393 participants aged 17-83 years from two longitudinal surveys. Almost all participants disclosed their diagnosis to someone, most commonly to friends. A significant minority of participants studying and/or working at the time had not disclosed to their education provider/employer. Content analysis of open-ended responses showed participants desired to gain understanding and support from disclosure but feared prejudice. While some received support, others encountered dismissiveness and misunderstanding. Findings highlight the need to improve autism understanding and reduce stigma within and beyond educational and employment contexts.

Asunto(s)

RESUMEN

Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults' journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics.

Asunto(s)

RESUMEN

Carers of adults on the autism spectrum often experience high levels of stress, worry, and caregiver burden. There are few studies identifying the predictors of carer mental well-being and none have been conducted in Australia. Data from the Autism Cooperative Research Centre for Living with Autism's Australian Longitudinal Study of Autism in Adulthood was used to test the conceptual model by Sonido et al. (Rev J Autism Dev Disord, 2019, https://doi.org/10.1007/s40489-019-00177-8 ) by (a) identifying the predictors of mental well-being for carers of adults on the spectrum, (b) using model selection to determine which predictors contribute to the model of best fit, and (c) testing for mediating relationships between the predictors. Several predictors were directly associated with carer psychological quality of life, including carer age, care recipient intellectual disability, and carer intolerance of uncertainty. Model selection strongly supported the inclusion of most clusters from the conceptual model. Some mediating relationships were found, such as care recipient depressive behaviours mediating the relationships between caregiver burden and psychological quality of life. Future studies of the conceptual model will improve understanding of the predictors of carer mental well-being and enable tailored interventions to improve the psychological health of carers of adults on the autism spectrum.

Asunto(s)

RESUMEN

Autism diagnosis in adulthood has become increasingly common due to a range of factors including changes in awareness, diagnostic criteria, and professional practices. Past research identified a range of demographic and autism-related factors associated with autism diagnosis age in children. However, it is unclear whether these apply to autistic adults. This study aimed to examine predictors of autism diagnosis age in adults while controlling for current age and autistic traits. We used a cross-sectional sample of 657 adults aged 15-80 from three self and carer-report studies: the Australian Longitudinal Study of Autism in Adulthood (ALSAA), Study of Australian School-Leavers with Autism (SASLA) and Pathways, Predictors and Impact of Receiving an Autism Spectrum Diagnosis in Adulthood (Pathways). Using hierarchical multiplicative heteroscedastic regression, we found that older current age and higher self-reported autistic traits predicted older diagnosis age, and that female gender, lack of intellectual disability, language other than English, family history of autism, lifetime depression, and no obsessive-compulsive disorder predicted older diagnosis age beyond current age and autistic traits. The paradoxical relationship between high autistic traits and older diagnosis age requires further investigation. Based on these findings, we recommended strategies to improve autism recognition in women and people from non-English-speaking backgrounds. Future studies could extend the findings by examining the effects of childhood and adulthood socioeconomic status on adult diagnosis age. LAY SUMMARY: We studied the relationship between age at autism diagnosis and other characteristics in adults. We found that both older current age and higher autistic traits, female gender, language other than English, family history of autism, and history of depression were related to older age at diagnosis, while intellectual disability and history of obsessive-compulsive disorder were related to younger age at diagnosis. Our findings suggest more work is needed to help recognize autism in women and people from non-English-speaking backgrounds.

Asunto(s)

RESUMEN

Autistic adults experience a high number of job changes, reduced working hours, minimal workplace supports, and overrepresentation in entry-level and low paid positions. This study adds to the existing evidence base to guide clinical decisions and interventions for this population. This study utilized baseline data collected between 2015 and 2017 from the Autism CRC's Australian Longitudinal Study of Autism in Adulthood. The aim was to describe the employment profiles and explore factors related to employment for Australian autistic adults aged 25 and older (N = 149). Comparisons between participants and the Australian workforce were made using Australian Bureau of Statistics (ABS) data. Two logistic regression models were conducted to explore the association between underemployment and underutilisation with personal and environmental factors. In comparison to the Australian workforce, autistic adults were more likely to work part-time, work reduced hours and be employed at skill levels lower than their qualifications warranted. Logistic regressions reported that more autistic traits, more social supports and having workplace adjustments implemented were significantly associated with a higher odds of autistic adults being appropriately employed and/or utilized in the workforce. Results suggest that interventions implementing appropriate workplace adjustments, a supportive workplace environment, and adequate social supports may improve employment outcomes for autistic adults. All employees may benefit from workplace resources targeted toward fostering an inclusive workplace environment. LAY SUMMARY: This study aimed to describe the employment profiles and explore factors related to employment for Australian autistic adults. We compared this with the Australian workforce using data from the Australian Bureau of Statistics. Autistic adults with more autistic traits and more social and workplace supports were more likely to be employed and have jobs that were better suited to them. Autistic adults might have better employment outcomes if they have the appropriate workplace adjustments, a supportive workplace and adequate social supports.

Asunto(s)

RESUMEN

Resilience has been depicted as a key characteristic in the promotion of mental health in the face of stress and adversity. Despite high levels of stress encountered in the autistic population, resilience studies remain scarce. Using data from an Australian longitudinal adult study, this study explored the inter-relationships between trait resilience, coping, and mental health in a sample of autistic adults (N = 78). In particular, we examined the relationship between resilience and use of coping strategies, and the potential mediating role of coping strategies in the relationship between resilience and mental health outcomes. Our findings suggested that increased use of engagement coping (e.g., problem-solving, positive appraisal) and decreased use of disengagement coping (e.g., self-blame, being in denial) strategies were associated with higher levels of resilience. Further, mediation analysis results suggest that disengagement coping mediated the associations between resilience and all three mental health outcomes (i.e., depression, anxiety, and well-being), while engagement coping strategies mediated the relationship between resilience and well-being only. Our results illustrate that coping strategies may be an important mechanism in explaining the resilience-mental health relationship in autistic adults, highlighting the importance of considering stress-related constructs together (i.e., trait resilience and coping) when addressing support and intervention options for mental health difficulties in the autistic adult population. LAY SUMMARY: This research explored how resilience and coping strategies influence the mental health and well-being of autistic adults. We found that resilient autistic adults used more engagement coping strategies, less disengagement coping strategies, and reported better mental health and well-being. Considering stress-related factors together (i.e., resilience and coping) offers a novel perspective to mental health difficulties in autistic adults and may be a vital step in the development of support options in this population.

Asunto(s)

RESUMEN

Despite the high prevalence of depression and other mental illnesses in autistic adults, screening instruments such as the Patient Health Questionnaire (PHQ-9) have not been specifically validated in an autistic sample. Using data from two Autism CRC longitudinal studies (n = 581), confirmatory factor analysis supported the two-factor model (somatic and cognitive/affective) in the autistic sample and one-factor model in the community comparison sample. Confirmatory bifactor analysis also supported use of the PHQ-9 total score in autism. Good convergent validity was found with two measures of psychological well-being for PHQ-9 total and subdomain scores. The PHQ-9 is a useful tool for autism research allowing comparison across autistic and non-autistic participants.

Asunto(s)

RESUMEN

Background: Awareness and diagnosis of autism in adulthood is on the rise. Studies have considered the impact of receiving an autism diagnosis for parents of children on the spectrum, although only few primarily qualitative studies have considered the self-reported impact of autism diagnosis. The Impact of Diagnosis Scale (IODS) was initially developed with a focus on borderline personality disorder. Our aim was to develop a version suitable for autistic individuals. Methods: The research team and a group of autistic advisors revised the IODS items for suitability and accessibility to autistic participants. We gathered participant data for 92 autistic adolescents and adults from the Cooperative Research Centre for Living with Autism (Autism CRC) Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We used iterated principal factors analysis to explore potential factors, and thematic analysis to explore responses to two open-ended items. Results: Factor analysis suggested three factors of "Service Access (SA)," "Being Understood (BU)," and "Self-Acceptance and Understanding (SU)" for the 12 items of the IODS-Preliminary Revision (IODS-PR). Cronbach's alpha was good overall and acceptable for subdomains. Item mean scores suggest that although impact of autism diagnosis was generally perceived as positive for SU, scores were neutral in other domains. Qualitative analysis identified themes of Self-Understanding, Identity, and Acceptance, Supports and Services, Valence of Response, Relationships, and Camouflaging. Conclusions: The IODS-PR is the first scale to measure the self-reported experience of receiving an autism diagnosis. It showed good psychometrics and provides new insight into the experience of autism diagnosis. Qualitative analysis identified domains that remain unexplored and the potential for an expanded item set. A further revision of the tool will soon be available. It will provide critical information for clinicians and has potential applications for research and service evaluation. Lay summary: Why was this study done?: There are increasing numbers of adults who are only diagnosed with autism in their teen and adult years. Research on this topic is limited, with most using surveys or interviews.What was the purpose of this study?: The purpose was to develop a revision of the Impact of Diagnosis Scale (IODS) to make it suitable to autistic teenagers and adults.What did the researchers do?: We worked with autistic research advisors to create the IODS-Preliminary Revision (IODS-PR), which has 12 items scored on a 7-point agree/disagree scale and two open-ended questions. We then gathered data using the IODS-PR from the Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We ran a factor analysis on the scores and conducted a thematic analysis of the open-ended responses. One of the autistic advisors reviewed how we interpreted our results.What were the results of the study?: There were 92 autistic participants (46 males, 38 females, 8 nonbinary; mean age of 36 years old). On average, participants were diagnosed with autism at age 30. The factor analysis suggested three domains in the IOD-PR: Self-Acceptance and Understanding, Being Understood, and Service Access. On average, participants' scores suggested receiving an autism diagnosis was helpful for understanding and accepting themselves, but neutral for being understood by others or getting support from services.The thematic analysis identified several themes, the strongest theme was Self-Understanding, Identity, and Acceptance, where participants mostly commented on the positive new self-identity that came from their autism diagnosis. There was a Supports and Services theme that was divided into Enabled Support, Support not needed, and No or poor services. Most concerning was that many participants commented that the autism diagnosis did not enable any access to supports or that there were no appropriate supports available. There was a Valence of Response theme that was divided into Relief, Positive impact, Wish diagnosed earlier, and Negative impact. There was a Relationships theme divided into Connected with autistic community, Improves relationships, and Others lack understanding. Finally, there was a Camouflaging theme.Based on these results, the researchers are working on further revisions to the IODS-PR to make it more useful and accessible.What do these findings add to what was already known?: The adapted IODS shows promise and findings will guide further development of the tool. These early-stage findings agree with what previous research said about the impact of receiving a diagnosis of autism in adulthood.What are potential weaknesses in the study?: There are strengths and weaknesses to using a questionnaire tool to research this topic. Interview research can get a more in-depth understanding of an individual's response to the diagnosis.How will these findings help autistic adults now or in the future?: When the revised IODS is available, it could be used to evaluate support services and help clinicians understand how to help create a more positive response to diagnosis. Our findings confirm more needs to be performed about postdiagnosis supports.

RESUMEN

Background: Sleep problems are common in autism from early childhood. Although research suggests that poor sleep continues at least into early middle age, the pattern of sleep problems has rarely been characterized beyond childhood. The aim of this study was to examine sleep quality from adolescence to old age in autistic individuals as compared with age-matched non-autistic comparison groups from the general population. Methods: Participants ranged from 15 to 80 years; there were 297 participants in the autistic group (mean [M]age = 34.36 years, standard deviation [SD] = 15.24), and the comparison group had 233 participants (Mage = 33.01 years, SD = 15.53). Sleep quality, sleep onset latency (SoL), total night sleep, and sleep efficiency as measured by Pittsburgh Sleep Quality Index were compared between groups and across age groups (15-19, 20-39, 40-59, 60+ years). Five predictors of sleep quality (autistic traits, mental health condition, medication, employment, and sex) were also examined. Results: Overall, problematic sleep was more common for the autistic participants (63.7%) than the comparison group (46.4%), and autistic participants had poorer sleep quality and longer SoL (all p < 0.001). In early adulthood and middle age, autistic adults had significantly poorer sleep quality and longer SoL than similar age comparison group adults; autistic and comparison group adolescents and the elderly did not differ. In the autistic group, predictors accounted for 21% of sleep quality variance. Sex (p < 0.001) was the strongest predictor, with all predictors except employment contributing unique variance. In the comparison group, predictors accounted for 25% of the variance in sleep quality. The strongest predictor was mental health condition (p < 0.001), with all predictors except sex contributing unique variance. Conclusions: Autistic adolescents and adults, particularly females, remain vulnerable to sleep problems, with early and middle adulthood being at times of particular risk. Targeted sleep interventions are required. Lay summary: Why was this study done?: Difficulty sleeping is a common occurrence among autistic individuals, but we know very little about sleep in autistic adults.What was the purpose of the study?: To compare self-reported sleep quality in autistic and non-autistic people aged 15 to 80 years.What did the researchers do?: Online surveys were completed by 297 autistic individuals (average age 34.36 years) and 233 non-autistic individuals (average age 33.01 years). Participants were asked questions about their sleep quality, the time it takes them to fall asleep (sleep latency), and the number of hours of sleep they usually get each night (total sleep). Using information about how long they slept and their responses to questions about their bedtime and wake time we calculated the percentage of time they spent in bed asleep (sleep efficiency [SE]). We compared these sleep measures between the autistic and non-autistic participants. We also split the participants into four age groups (15-19, 20-39, 40-59, and 60+ years) to look at any differences at specific age points. Finally, we looked to see whether autistic symptoms, having a mental health problem, being on medication, being unemployed, and/or sex (male/female) predicted sleep quality.What were the results of the study?: Poor sleep quality was more common for the autistic participants (63.7%) than non-autistic participants (46.4%). On average, autistic participants also had poorer sleep quality scores and it took them longer to fall asleep than non-autistic participants. Autistic participants in early adulthood (20-39) and middle age (40-59) had poorer sleep quality and took longer to fall asleep than non-autistic adults of the same age. There were no differences between autistic and non-autistic adolescents (15-19) or older adults (60+). For autistic participants, the best predictor of poor sleep quality was being female; other predictors of poor sleep quality were having a mental health problem, more autistic symptoms, and being on medication. Among non-autistic participants, the best predictor of poor sleep quality was having a mental health problem; other predictors were more autistic symptoms, being on medication, and being unemployed.What do these findings add to what is already known?: Similar to the findings in autistic children, autistic adults are more likely to have poor sleep quality compared with non-autistic adults. Autistic females are particularly at risk for poor sleep, and autistic adults aged 20 to 59 years are more at risk for poor sleep quality.What are potential weaknesses in the study?: Sleep was measured by using a self-report questionnaire, which is not as reliable as using a sleep diary or other objective measures of sleep (e.g., actigraphy). In addition, this study only looked at data collected at one point in time, and as such it is not possible to examine changes over time in sleep quality among autistic adults.How will these findings help autistic adults now or in the future?: The findings in this study identified that sleep difficulties persist across the lifespan for autistic adults. Therefore, there is a critical need for future research to focus on understanding the cause of poor sleep quality in autism and develop sleep interventions for autistic adults.

RESUMEN

Background: Loneliness is associated with adverse psychological and physical outcomes. However, little is known about the factors contributing to loneliness in autistic adults. This study aimed to quantitatively compare levels and predictors of loneliness in autistic and nonautistic adults, and then contextualize these findings by thematically analyzing responses to open-ended questions on autistic adults' socialization experiences. Methods: We obtained data from the Cooperative Research Centre for Living with Autism (Autism CRC) Australian Longitudinal Study of Adults with Autism (ALSAA). The sample comprised 220 autistic adults (age mean [M] = 41.9 years, standard deviation [SD] = 12.24) and 146 nonautistic adults (age M = 43.7 years, SD = 13.49). We measured loneliness with the University of California, Los Angeles (UCLA) loneliness scale (ULS-8). We compared the findings between these two groups of adults. Through regression models, we investigated associations between loneliness and demographics, autistic traits, social support, depression, anxiety, and self-efficacy. We adapted these determinants from De Jong-Gierveld's model of loneliness. In addition, we conducted an inductive thematic analysis of autistic participants' open-ended responses about their socialization. We used an inclusive approach utilizing an advisory panel of autistic adults in study design and interpretations. Results: Autistic adults scored significantly higher on the ULS-8 than nonautistic adults (p < 0.001). The presence of autism contributed the greatest variance in the loneliness score (B = 8.11, 95% confidence interval [6.98-9.23], p < 0.001, R 2 = 0.38). The autism quotient subdomains of social skills and dissatisfaction with social support were associated with greater loneliness in both autistic and nonautistic groups (p < 0.05). The thematic analysis contextualized the interpretation of quantitative findings, specifically regarding perceived loneliness and difficulties with social interaction. Satisfaction and perceptions of socialization were widely variable and both of which were shaped by experiences. Environmental factors, noise in particular, as well as social communication difficulties and past negative experiences seemed to be the barriers to socialization. Conclusions: Autistic adults have reported higher levels of loneliness. Variables associated with loneliness in both groups were dissatisfaction with social support and the autism quotient subdomain of social skills. The subjectivity of perceived loneliness, views about socialization, and their implications for social support in autistic adults warrant further study.

RESUMEN

BACKGROUND: Children and adolescents with autism spectrum disorder (ASD) are a highly medicated group. Few studies have examined the neuropsychiatric profile and patterns of psychotropic medication use among adults with ASD. AIMS: To describe and compare the neuropsychiatric profile and psychotropic medication use in a cohort of adults with ASD and non-autistic controls. METHOD: Baseline data from a survey-based, longitudinal study of adults with ASD in Australia. Participants were 188 adults with ASD and 115 controls aged 25-80 years. RESULTS: ASD was associated with increased odds of psychotropic medication use even when controlling for the presence of any neurological or psychiatric disorder. There were no corresponding indications for 14.4% of psychotropic medications prescribed to adults with ASD. CONCLUSIONS: This study found substantial psychotropic prescribing for adults with ASD. Patterns of psychotropic medication use may reflect prescribing for behavioural indications despite limited evidence to support this practice. DECLARATION OF INTEREST: None.

RESUMEN

Internationally, various approaches are used for the allocation of individualized funding. When using a databased approach, a key question is the predictive validity of adaptive behavior versus support needs assessment. This article reports on a subset of data from a larger project that allowed for a comparison of support needs and adaptive behavior assessments when predicting person-centered funding allocation. The first phase of the project involved a trial of the Inventory for Client and Agency Planning (ICAP) adaptive behavior and Instrument for the Classification and Assessment of Support Needs (I-CAN)-Brief Research version support needs assessments. Participants were in receipt of an individual support package allocated using a person-centered planning process, and were stable in their support arrangements. Regression analysis showed that the most useful items in predicting funding allocation came from the I-CAN-Brief Research. No additional variance could be explained by adding the ICAP, or using the ICAP alone. A further unique approach of including only items from the I-CAN-Brief Research marked as funded supports showed high predictive validity. It appears support need is more effective at determining resource need than adaptive behavior.

Asunto(s)

RESUMEN

BACKGROUND: Since 1992, the diagnosis and classification of intellectual disability has been dependent upon three constructs: intelligence, adaptive behaviour and support needs (Luckasson et al. 1992. Mental Retardation: Definition, Classification and Systems of Support. American Association on Intellectual and Developmental Disability, Washington, DC). While the methods and instruments to measure intelligence and adaptive behaviour are well established and generally accepted, the measurement and classification of support needs is still in its infancy. This article explores the measurement and classification of support needs. METHOD: A study is presented comparing scores on the ICF (WHO, 2001) based I-CAN v4.2 support needs assessment and planning tool with expert clinical judgment using a proposed classification of support needs. A logical classification algorithm was developed and validated on a separate sample. RESULTS: Good internal consistency (range 0.73-0.91, N = 186) and criterion validity (κ = 0.94, n = 49) were found. CONCLUSIONS: Further advances in our understanding and measurement of support needs could change the way we assess, describe and classify disability.

Asunto(s)

RESUMEN

Abstract In many developed cultures there is an assumption that IQ is intelligence. However, emerging theories of multiple intelligences, of emotional intelligence, as well as the application of IQ testing to other cultural groups, and to people with disability, raises many questions as to what IQ actually measures. Despite recent research that shows IQ testing produces a floor effect when applied to people with lower IQ, as well as research that shows the Flynn effect also applies to people with lower IQ, in practice IQ scores below a certain cut-off are still being used to determine and classify a person's intellectual disability. However, a new paradigm is emerging, almost returning to the original intent of Binet, where measurement is made of the supports the person needs. In this paper, we argue that if one extends the notions of this supports paradigm that diagnosis of intellectual or physical disability could potentially be replaced by diagnosis of additional intellectual support needs, or additional physical support needs.

Asunto(s)