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<jats:p> We analyzed the Healthcare Cost and Utilization State Emergency Department (ED) Databases and State Inpatient Databases for all individuals who were 2 years of age or older with at least one ED visit from 2011 to 2016 in New York to estimate the association between suicide and non-fatal injury-related ED visits and autism spectrum disorder (ASD). Our study included 14.4 million individuals with 43.5 million ED visits. Of those, 31,946 (0.2%) individuals had ASD accounting for 162,440 ED visits (0.4%). Compared to those without ASD, individuals with ASD had 2.1 more ED visits on average, higher shares of inpatient ED visits, more years of ED utilization, and higher prevalence of mental health-related comorbidities and diagnoses and self-injury-related ED visits. Among the ASD cohort, 6.1% had at least one self-injury-related ED visit compared to 2.2% among those without ASD. Using multivariable regressions adjusted for sociodemographic, clinical, contextual, and visit-level characteristics, we found that individuals with ASD were significantly more likely to have at least one self-injury-related ED visit compared to those without ASD. Our findings highlight the importance of raising awareness among caregivers and providers about the increased self-injury risk that individuals with ASD face and to tailor care delivery practices towards their needs. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> This study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder. </jats:p></jats:sec>

<jats:p> Many of the nearly six million autistic adolescents and adults in the United States require support to navigate daily life. Family members often provide the first line of support for autistic youth by providing care and coordinating services. Although considerable research has examined the perspectives of family members caring for young autistic children, comparatively less has focused on those caring for transition-age youth who often struggle to access needed services as they leave child-serving systems of care. This study examined caregiver-reported barriers to service for 174 adolescents and young adults on the spectrum (ages 16–30) and the association between such barriers and unmet service needs. Exploratory factor analysis suggested two service barrier domains: access (e.g., cost) and quality (e.g., providers not trained). Regression models indicated that caregivers whose youth were diagnosed at older ages perceived both greater access and quality barriers. Male caregivers reported fewer access barriers, and those who perceived greater caregiver burdens (daily life disruptions, financial difficulties, and worries) reported more access barriers. Caregivers whose youth lived with them reported fewer quality barriers. Greater access–but not quality–service barriers predicted greater unmet service needs. Findings have implications for service delivery to autistic youth and specific directions for future research. </jats:p><jats:sec><jats:title>Lay Abstract</jats:title><jats:p> Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families. </jats:p></jats:sec>

<jats:p> Research has consistently found high rates of victimisation among autistic children. There is emerging evidence that disproportionate victimisation continues into adulthood, however the extent, nature and impact and the mechanisms that underlie high rates of interpersonal violence are not well understood. Here we investigate the nature and impact of violence experiences using qualitative methods. Twenty-two autistic adults who had experienced interpersonal violence during adulthood participated in semi-structured interviews. We analysed the data using a thematic analysis to identify key themes. Violence was commonplace in their own lives and in the lives of other autistic people that they knew, to the extent that violence had become normalised. They spoke of the impacts of these experiences on their mental health, self-concept and subsequent relationships and of how these impacts were exacerbated when their disclosures were dismissed by others. They reported that certain autistic characteristics might make them more vulnerable and of how such characteristics were often shaped by repeated experiences of invalidation and pressure to conform within a neurotypical world. These findings demonstrate the importance of developing ways to improve the personal safety of autistic people which must include the broader social factors that at least partly contribute to these distressing experiences. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Research has consistently shown that autistic children are more likely to be victimised than non-autistic children. More recently, studies have also found that autistic adults report experiencing more violence than non-autistic adults however the circumstances surrounding these incidents and the reasons for this are not clear. We wanted to learn more about violence during adulthood for autistic people including what led up to these incidents and what happened afterwards. We spoke to 22 autistic adults who had experienced violence and analysed what they told us to look for common themes. They told us that violence was commonplace in their own lives and in the lives of other autistic people that they know, so much so that they had even come to expect it to happen. They also talked about the negative effect these experiences had on their mental health, the way they felt about themselves and their ability to trust people. This was made worse if people did not believe them when they disclosed what had happened to them. They told us that certain autistic characteristics might make them more vulnerable like being too trusting or going along with people just to please them. They thought that some of these characteristics had been shaped by their experiences, especially being told that that their thoughts, feelings or behaviours were wrong and being pressured to change the way they behaved to ‘fit in’. These findings are important in helping us to understand how to improve the personal safety of autistic people. </jats:p></jats:sec>

<jats:p> Given the importance of parent involvement and parent-implemented interventions in achieving maximum child outcomes, practitioners need valid measures to assess and monitor family outcomes in developing and delivering effective and sustainable interventions. This study examined the structure of the Family Outcomes Survey, Form A, using a sample of 467 caregivers of young children diagnosed with or at increased likelihood of autism in China and identified significant predictors of the five family outcomes. Findings supported a five-factor model but a poorer fit was reported when the overall family outcome factor was added to the model. Modeling shared variance between some items under Outcome 4, “having support systems,” and Outcome 5, “accessing the community” was found to significantly improve the model fit. Among the analyzed child and family characteristics, the number of hours that the caregiver spent with the autistic child, caregivers’ employment status, family income, and caregivers’ educational attainment were found to be significantly associated with Family Outcomes Survey, Form A scores. Implications of the findings are discussed. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Efforts to measure, document, and monitor family outcomes can be helpful to practitioners in developing and delivering effective and sustainable interventions. Researchers have developed the Family Outcomes Survey, Form A, for measuring the outcomes experienced by families of children in the early intervention/early childhood special education system. Little has been reported on how well the five outcomes on the Family Outcomes Survey, Form A describe the experiences and expectations of families of autistic children in China. We conducted a survey using the Family Outcomes Survey, Form A, Chinese version with 467 caregivers of young autistic children in China. First, the five-outcome structure of the Family Outcomes Survey, Form A seemed to be appropriate for measuring family outcomes of autistic children in China. We also found that the Chinese caregivers of autistic children seemed to give general lower ratings on all five outcomes on the Family Outcomes Survey, Form A as compared to caregivers of children in early intervention/early childhood special education in Western countries like the United States and Australia. Furthermore, caregivers’ ratings on the five Family Outcomes Survey, Form A outcomes seemed to be related to their educational attainment, employment status, family income level, and how much time caregivers spent with their autistic child. This study supported the use of the Family Outcomes Survey, Form A, Chinese version with families of autistic children in China. We also discussed how the coronavirus disease 2019 pandemic could have impacted the family outcomes as reported by the Chinese caregivers. </jats:p></jats:sec>

<jats:p> Sleep problems are common in autistic children and adversely impact daytime functioning. Knowledge of predictive factors could help with treatment and prevention of these problems. This study aimed to determine predictors of sleep problems among young autistic children. Study cohorts consisted of autistic children aged 2–5 years who did not have sleep problems at a first visit and had sleep measure data available at a subsequent visit. Sleep problems for five study cohorts were defined by different methods: Children’s Sleep Habits Questionnaire with two cutoff scores (41 and 48; cohort n = 101 and 204, respectively), Children’s Sleep Habits Questionnaire–autism derived cutoff score (35; n = 188), and parent- (n = 205) or clinician- (n = 252) report. Separate predictive models of sleep problems were developed in each cohort using multivariable logistic regression with final model predictors determined by backward elimination selection. Model performance was evaluated. Two of the five models had both adequate discrimination and calibration performance predicting (1) Children’s Sleep Habits Questionnaire score ⩾ 48 and (2) Children’s Sleep Habits Questionnaire–autism score ⩾ 35. In both models, self-injurious behavior, sensory issues, dental problems, and lower primary caregiver education level were significant risk factors of future sleep problems. These predictors may be useful in helping clinicians provide prevention strategies or early intervention for children who are at a higher risk of developing sleep problems. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Sleep problems are common in autistic children and negatively impact daytime functioning. A method for predicting sleep problems could help with treatment and prevention of such problems. This study aimed to determine predictors of sleep problems among young autistic children. Study participants consisted of autistic children aged 2–5 years who did not have sleep problems at a first visit (Autism Treatment Network Registry) and had sleep data available at a subsequent visit (Registry Call-Back Assessment study). Sleep problems for five study cohorts of children were defined by different methods, including parent questionnaires and parent- or clinician-report of sleep problems. We found that self-injurious behavior, sensory issues, dental problems, and lower primary caregiver education level were significant risk factors of future sleep problems. These predictors may help clinicians provide prevention or earlier treatment for children who are at risk of developing sleep problems. </jats:p></jats:sec>

<jats:p> Autistic people face many challenges entering the workforce, for example, during job interviews where performance is reliant on particular social skills. To be competitive during job interviews, autistic people may experience pressure to conceal or ‘camouflage’ their autistic traits and behaviour. This qualitative study used semi-structured interviews to explore the job interview experiences of 10 autistic people. Based on the literature, we were curious as to whether participants would report behaviour consistent with the camouflaging hypothesis. Thematic analysis identified six themes reflecting individual and environmental factors. Participants reported engaging in camouflaging behaviour during job interviews, with external factors (e.g. avoid being treated differently) cited as the primary reason. Participants reported that camouflaging required effort, leading to stress, anxiety, exhaustion and feeling ‘burnt out’. They expressed a desire for an inclusive, understanding and accommodating environment where they would feel more comfortable disclosing their diagnosis without feeling they needed to conceal their autistic traits and behaviour. These preliminary findings add to the current literature regarding autism, camouflaging and employment. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> When applying for a job, autistic job candidates are likely to face a number of challenges. Job interviews are one of these challenges – they require communicating and relationship-building with unfamiliar people and involve expectations about behaviour (that may vary between companies and are not made clear to job candidates). Given autistic people communicate differently to non-autistic people, autistic job candidates may be disadvantaged in the interview process. Autistic candidates may not feel comfortable or safe sharing with organisations their autistic identity and may feel pressure to hide any characteristics or behaviour they feel might indicate they are autistic. To explore this issue, we interviewed 10 autistic adults about their job interview experiences in Australia. We analysed the content of the interviews and found three themes that related to the individual person and three themes that related to environmental factors. Participants told us that they engaged in camouflaging behaviour during job interviews, feeling pressure to conceal aspects of themselves. Those who camouflaged during job interviews reported that it took a lot of effort, which resulted in increased stress, anxiety and exhaustion. The autistic adults we spoke to reported a need for inclusive, understanding and accommodating employers to help them feel more comfortable disclosing their autism diagnosis in the job application process. These findings add to current research that has explored camouflaging behaviour and barriers to employment for autistic people. </jats:p></jats:sec>

<jats:p> Males are more likely to be diagnosed with autism than females, and at earlier ages, yet few studies examine sex differences in screening. This study explored sex differences in psychometric properties, recommended cutoff scores, and overall scores of the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up. Participants were 28,088 toddlers enrolled in four early detection of autism studies. Children ( N = 731) at high likelihood for autism attended evaluations after screening and/or primary care clinician concern. Females were less likely to screen at high likelihood for autism at each stage of screening and therefore less likely to be invited for evaluations. Positive predictive value was significantly lower among females than males, but sensitivity was similar. False positive females were likely to have another developmental delay. Cutoff scores for males and females matched recommended guidelines. Final scores on the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up did not differ between males and females diagnosed with autism, but did for the overall sample identified at high likelihood for autism. Our findings suggest that females are less likely to be referred for evaluations, but the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up accurately identifies both males and females with autism at established cutoffs. Future research should examine methods to reduce false positive in females. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> This study examined a widely used autism screening tool, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up to identify differences in screening for autism between toddler males and females. Examining sex differences in screening for autism in toddlerhood is important as it determines who will be referred for evaluations and receive diagnoses, which is critical for access to autism-specific early intervention. This study found that females were less likely to screen positive and be invited for evaluations compared with males. Females at high likelihood for autism were less likely to be diagnosed with autism, which decreases confidence in the screener’s results. Importantly, the Modified Checklist for Autism in Toddlers, Revised, with Follow-Up accurately identified both males and females with autism. Future research should examine ways to improve accuracy in screening results for females. </jats:p></jats:sec>

<jats:p> Presently, most mental health practitioners in the United States are educated, trained, and employed in a system focused on curing or changing autistic people. As a result, mental health practitioners may exhibit anti-autistic bias—any form of bias that degrades, devalues, or others autistic people or traits —when engaged with autistic clients. Since the collaborative relationship between therapist and client, termed the “therapeutic alliance,” is often viewed as the most influential element of therapeutic effectiveness, our phenomenological study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they perceive it has on their self-esteem. Findings, determined through thematic analysis, reveal implicit, unintentional bias was manifested through clinical assumptions about autism, explicit, overt bias was expressed through feelings of intentional harm, and repair of self-esteem was shown through positive alliances. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals. </jats:p><jats:sec><jats:title>Lay Abstract</jats:title><jats:p> Many mental health practitioners in the United States are trained to cure or change autistic people. Some of these mental health practitioners may show anti-autistic bias when working with autistic clients. Anti-autistic bias is any kind of bias that degrades, devalues, or others autistic people or autistic traits. Anti-autistic bias is especially problematic when mental health practitioners and clients are engaged in the therapeutic alliance, which is the collaborative relationship between a therapist and client. The therapeutic alliance is one of most important parts of an effective therapeutic relationship. Our interview-based study examined 14 autistic adults’ experiences with anti-autistic bias in the therapeutic alliance and the relationship they felt it has on their self-esteem. Results from this research showed that some mental health practitioners expressed hidden and unrealized bias when working with autistic clients, such as making assumptions about what it means to be autistic. Results also showed that some mental health practitioners were intentionally biased and openly harmful to their autistic clients. Both forms of bias negatively affected participant self-esteem. Based on the findings of this study, we offer recommendations to help mental health practitioners and mental health practitioner training programs better serve autistic clients. This study addresses a significant gap in current research on anti-autistic bias in the mental health field and the overall well-being of autistic individuals. </jats:p></jats:sec>

<jats:p> Although it has been found that autistic children exhibit delays in executive function abilities and atypical patterns of attention, less is known about the relationship between executive function and attention abilities and social and language skills in early childhood. In this study, 180 autistic children, age 2–8 years, participated in a study examining the relationship between executive function abilities, measured by the Behavior Rating Inventory of Executive Function, and assessments of sustained attention measured via eye-tracking and several language and social communication measures. Results revealed that children with higher caregiver-reported executive function skills, specifically, working memory and planning/organization abilities, demonstrated higher levels of caregiver-reported receptive-expressive social communication abilities measured via the Pervasive Developmental Disorder Behavior Inventory. Higher executive function abilities across all domains were associated with lower levels of social pragmatic problems. Children who were able to sustain their attention for a longer duration demonstrated higher expressive language abilities. These results suggest that executive function and attention skills may play an important role in multiple domains of functioning in autistic children. It will be useful to determine whether therapies that seek to improve executive function skills in autistic individuals also positively influence their social/communication and language abilities. </jats:p><jats:sec><jats:title>Lay Abstract</jats:title><jats:p> Executive functioning describes a set of cognitive processes that affect thinking and behavior. Past research has shown that autistic individuals often have delays in the acquisition of executive function abilities. Our study explored how differences in executive function and attention abilities relate to social abilities and communication/language in 180 young autistic children. Data were gathered via caregiver report (questionnaires/interviews) and an assessment of vocabulary skills. The ability to sustain attention to a dynamic video was measured via eye tracking. We found that children with higher levels of executive function skills demonstrated lower levels of social pragmatic problems, a measure of having difficulties in social contexts. Furthermore, children who were able to sustain their attention longer to the video displayed higher levels of expressive language. Our results emphasize the importance of executive function and attention skills across multiple areas of functioning in autistic children, in particular those that involve language and social communication. </jats:p></jats:sec>

<jats:p> Black and non-White Latinx children have historically been diagnosed with autism at a later age and with more significant impairments than White peers. This study aimed to gather insights from members of the autism service provider workforce on current barriers and facilitators to achieving equity in early childhood autism evaluation, referrals, and treatment. We employed a qualitative descriptive design using semi-structured virtual focus groups with autism experts in North Carolina (N = 26). Our final sample included pediatric clinicians across disciplines, researchers, family/caregiver advocates, and policymakers/government representatives. We identified four overarching themes representing challenges to equitable autism service provision: (1) workforce composition and recruitment concerns, (2) workforce capacity and accessibility concerns, (3) workforce compensation obstacles, and (4) COVID-19 pandemic adaptations’ impact. Our findings demonstrate the need for improved workforce diversity, autism-specific education, adequate compensation, and interventions to address burnout. To remediate existing barriers to equity, diversity in recruitment across training levels, cultural awareness, autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow its interdisciplinary professionals to better meet the needs of children and families from historically marginalized communities and achieve equitable early childhood service provision. </jats:p><jats:sec><jats:title>Lay abstract</jats:title><jats:p> Black and non-White Latinx children tend to receive autism diagnoses later in life and with a higher degree of impairment than White children. The purpose of this study was to learn what is currently helping as well as preventing Black and non-White Latinx children from getting access to autism evaluation and services. We held virtual interviews with 26 experts who work with autistic children and their families, including clinical providers, researchers, advocates, and policymakers/government representatives. From these interviews, we identified four themes that have an impact on equity in autism services: (1) who makes up the workforce, (2) w orkforce capacity and accessibility, (3) workforce payment structure, and (4) changes due to the COVID-19 pandemic. These findings show the need for improved workforce diversity, autism-specific education, payment structures, and additional support for workforce members to avoid burnout. To make childhood autism services more equitable, diversity in recruitment across training levels, cultural awareness, increased autism education for all pediatric providers, and partnerships with caregivers as experts must be prioritized. These investments in the autism workforce will allow professionals in the field to better meet the needs of children and families from Black and non-White Latinx communities and achieve equity in early childhood autism services. </jats:p></jats:sec>