Home-based video assessment of children's autism-related behaviours: Psychometric analysis and linkages with parental responsiveness and context.

OBJECTIVES: Assessment of autism-related behaviours (ARBs) in children has generally been limited to direct observations in clinical settings or informant-based reports. The widespread availability of video-streaming devices has made home observations of children's ARBs feasible. This approach could enable assessment of the generalization and durability of interventions and may be able to overcome methodological limitations of predominant current assessment approaches (response biases, limited sensitivity to treatment). DESIGN AND METHODS: Forty-four autistic children and their families participated in a repeated-measures study with a correlational design. Approximately 10 hr of unprompted behaviour at home were videorecorded over the course of a week (2 hr per day) for each participant. Gold standard measures of ARBs were also administered (ADOS-2 and ADI-R). Two home-based observational measures of ARBs utilizing streaming video were developed and evaluated: the ARCHER and the CHEERS. Trained independent evaluators made ratings on the ARCHER, CHEERS and an observational measure of parental responsiveness. RESULTS: Correlations with the ADOS-2 and ADI-R were .47 and .34 for ARCHER scores and .51 and .48 for CHEERS scores, respectively. In linear mixed models, more responsive parenting was associated with fewer ARBs on a daily basis. Children spent their afternoons engaged in many typical activities including electronics, homework and games with family members, and ARBs were more prominent in some of these contexts (e.g., electronics) than others (e.g., family games). CONCLUSIONS: Home-based observational assessment of ARBs may be useful for clinical and descriptive research.

Interpersonal Distance Theory of Autism and Its Implication for Cognitive Assessment, Therapy, and Daily Life.

The interpersonal distance (IPD) theory provides a novel approach to studying autism spectrum disorder (ASD). In this article, we present recent findings on the neurobiological underpinnings of IPD regulation that are distinct in individuals with ASD. We also discuss the potential influence of environmental factors on IPD. We suggest that different IPD regulation may have implications for cognitive performance in experimental and diagnostic settings, may influence the effectiveness of training and therapy, and may play a role in the typical forms of social communication and leisure activities chosen by autistic individuals. We argue that reconsidering the results of ASD research through the lens of IPD would lead to a different interpretation of previous findings. Finally, we propose a methodological approach to study this phenomenon systematically.

Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words.

Autistic individuals with intellectual disability who speak few or no words are at high risk of anxiety but are underrepresented in research. This study aimed to describe the presentation of anxiety in this population and discuss implications for the development of assessments. Interviews were conducted with 21 parents/carers of autistic individuals and nine clinicians. Data were analysed using content analysis and interpretative phenomenological analysis. Anxiety behaviours described by parents/carers included increased vocalisation, avoidance and behaviours that challenge. Changes to routine were highlighted as triggering anxiety. Clinicians discussed the importance of identifying an individual's baseline of behaviour, knowing an individual well and ruling out other forms of distress. This study raises considerations for early identification of anxiety and for subsequent support.

A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults.

LAY ABSTRACT: Living with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people's experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.

The Brief Observation of Symptoms of Autism (BOSA): Development of a New Adapted Assessment Measure for Remote Telehealth Administration Through COVID-19 and Beyond.

Interest in telehealth assessment for autism has increased due to COVID-19 and subsequent expansion of remote psychological services, though options that are easy for clinicians to adopt and available through the lifespan are limited. The Brief Observation of Symptoms of Autism (BOSA) provides a social context with standardized materials and activities that can be coded by clinicians trained in the Autism Diagnostic Observation Schedule. The current project examined psychometric properties to determine optimal use for each BOSA version. Three hundred and seven participants with 453 BOSAs were included to determine best performing items for algorithms, validity, sensitivity, specificity, recommended cut-offs, and proposed ranges of concern. While preliminary, the BOSA provides a promising new option for telehealth-administered assessment for autism.

Remote assessment in adults with Autism or ADHD: A service user satisfaction survey.

Advances in digital health have enabled clinicians to move away from a reliance on face to face consultation methods towards making use of modern video and web-based conferencing technology. In the context of the COVID-19 pandemic, remote telecommunication methods have become much more common place in mental health settings. The current study sought to investigate whether remote telecommunication methods are preferable to face to face consultations for adults referred to an Autism and ADHD Service during the COVID-19 pandemic. Also, whether there are any differences in preferred consultation methods between adults who were referred for an assessment of Autism as opposed to ADHD. 117 service users who undertook assessment by the ADHD and Autism Service at South West Yorkshire NHS Partnership Foundation Trust from April to September 2020 completed an adapted version of the Telehealth Usability Questionnaire (TUQ). Results demonstrated that service users found remote telecommunication to be useful, effective, reliable and satisfactory. Despite this, almost half of service users stated a general preference for face to face consultations. There was no difference in the choice of methods of contact between Autism and ADHD pathways. Remote telecommunication methods were found to be an acceptable medium of contact for adults who undertook an assessment of Autism and ADHD at an NHS Service during the COVID-19 pandemic.

Cognitive and Social Cognitive Self-assessment in Autistic Adults.

An aspect of metacognition associated with broader functional abilities in several clinical conditions, but previously unexamined in autism, is self-assessment (i.e., the ability to accurately self-evaluate one's own performance). We compared self-assessment between 37 autistic adults without intellectual disability to 39 non-autistic (NA) controls on a series of three general cognitive and three social cognitive tasks. Whereas autistic adults and NA adults did not differ in their self-assessment accuracy on general cognitive tasks, they did on social cognitive tasks, with autistic adults demonstrating lower accuracy. The direction of their inaccuracy was variable (i.e., both over and underestimation), and self-assessment was largely unrelated to their level of social functioning. Over versus underestimation may have different functional implications, and warrants future investigation.

An Assessment of the Psychometric Properties of the GHQ-12 in an English Population of Autistic Adults Without Learning Difficulties.

Valid and reliable tools to measure mental health are a key requirement to developing a robust evidence base on mental health difficulties and autism. There are several reasons why mental health measures developed for the neurotypical population may not be valid and reliable when used with autistic adults. Using data collected from a national evaluation of community-based, specialist autism provision in England, this study assessed the psychometric properties of the General Health Questionnaire (GHQ-12) in a population of autistic adults without learning difficulties. We examined the measure's acceptability, reliability and internal construct validity. The GHQ-12 was found to have good psychometric properties in this population. This provides first evidence that this measure can be used with autistic adults without LD.

Autism and Access to Care During the COVID-19 Crisis.

CASE: Brian is a 6-year-old boy who was diagnosed with autism spectrum disorder (ASD) and global developmental delay at age 2. He has no other health conditions of note. Brian lives with his parents and an older brother, who also has ASD, in a rural area 2 hours from the center where he was diagnosed. Brian has a history of intermittent self-injurious behaviors (head-banging, throwing himself onto the floor, etc.) that regularly result in bruising, intense and lengthy tantrums, and aggression toward family and teachers. Brian will occasionally indicate items that he wants, but otherwise has no functional communication skills. Over the past 18 months, Brian's challenging behaviors have waxed and waned. The regional special education program is not equipped to safely manage his behaviors, and there are no in-home or center-based agencies that provide applied behavior analysis (ABA) available. Brian's developmental pediatrician initiated guanfacine (eventually adding a small dose of aripiprazole) and referred the family to psychology for weekly telehealth behavioral parent training to address behavioral concerns using the Research Units in Behavioral Intervention curriculum.1Brian's behavioral problems decreased during the initial weeks of the COVID-19 crisis, when he no longer had to leave home or attend special education. However, as summer continued, his behaviors worsened substantially (regular bruising and tissue damage, numerous after-hours consultations with his psychologist and developmental pediatrician, and one trip to the emergency department). The intensity of Brian's behaviors (maintained primarily by access to tangible items and escape from demands) made progress with behavioral supports slow and discouraging for his parents. Other psychosocial stressors coalesced for the family as well, including employment loss, limited social support because of social distancing requirements, and illness of one of his parents. The developmental pediatrician continued to modify the medication regimen over the summer, transitioning Brian from guanfacine to clonidine and increasing his aripiprazole incrementally (with clear increased benefit); hydroxyzine was also used as needed during the episodes of highest intensity.Despite the availability of best-practice guidelines for children with Brian's presenting concerns,2 a confluence of barriers (geographic, economic, ABA work force, global pandemic, etc.) present serious questions for his family and care team related to the next steps in Brian's care. Should he attend in-person school in the fall, knowing that the available program may have limited educational benefit and increase his risk of COVID-19 exposure (not to mention self-injury)? Would the potential benefits of cross-country travel to an intensive behavioral treatment program outweigh the associated psychosocial and economic stressors? How else can the virtual care team support this family? REFERENCES: 1. Bearss K, Johnson C, Smith T, et al. Effect of parent training vs parent education on behavioral problems in children with autism spectrum disorder: a randomized clinical trial. JAMA. 2015;313: 1524-1533.2. Hyman SL, Levy SE, Myers SM, et al. Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics. 2020;145:e20193447.

Physical Activity Among Adults With Autism: Participation, Attitudes, and Barriers.

Children and adolescents with autism spectrum disorder (ASD) have shown have low levels of physical fitness, increasing risks for health-related problems associated with inactivity, such as being overweight, when compared with typically developing children. Few studies have examined physical activity (PA) among adults with ASD. This U.S.-based study examined participation in and attitudes and barriers toward PA among adults with ASD and their peers without ASD. We used standardized existing scales to survey participants for data regarding their frequency of engagement in weekly PA (strenuous, moderate, light), attitudes toward PA, expectations of others, perceived behavioral control, intention toward PA, and perceived PA barriers. Findings indicated that, on average, the ASD group compared with the comparison group reported (a) less frequent strenuous or moderate PA, (b) less positive attitudes toward PA, (c) less perceived behavioral control or ease of performing PA, and (d) more PA barriers. There was also evidence that the ASD group reported less PA intent, but there was no difference between groups regarding beliefs about others' PA expectations for them. These findings suggest a need for more PA for adults with ASD, particularly because PA has potential to attenuate such ASD challenges as anxiety, stress, and sleeping difficulties.

[Appreciating COVID-19 as a child and adolescent psychiatrist on the move]. / Appréhender le COVID-19 au fil de l'eau en tant que psychiatre d'enfant et d'adolescent.

COVID-19 is a multi-organ disease due to an infection with the SARS-CoV2 virus. It has become a pandemic in early 2020. The disease appears less devastating in children and adolescents. However, stress, quarantine and eventually mourning have major impacts on development. It is difficult to describe what this pandemic implies for a child psychiatrist, other than by giving a first-hand account. I propose to go through the main ethical questions that have arisen; to describe how my hospital team has reorganized itself to meet the new demands and questions, in particular by opening a unit dedicated to people with autism and challenging behaviors affected by COVID-19; and to address, in a context of national discussion, how the discipline has sought to understand the conditions of a certain well-being during quarantine. Finally, I will try to conclude with more speculative reflections on re-opening.

An analysis of the value of token reinforcement using a multiple-schedule assessment.

Token systems are widely used in clinical settings, necessitating the development of methods to evaluate the reinforcing value of these systems. In the current paper, we replicated the use of a multiple-schedule reinforcer assessment (MSA; Smaby, MacDonald, Ahearn, & Dube, 2007) to evaluate the components of a token economy system for 4 learners with autism. Token systems had reinforcing value similar to primary reinforcers for 2 of the 4 learners, but resulted in lower rates of responding than primary reinforcers for the other 2 learners. Differentiated responding across learners may warrant variation in clinical recommendations on the use of tokens. The results of this study support formal assessment of token system effectiveness, and the MSA procedure provides an efficient method by which to conduct such assessments.

Suicidal Ideation and Self-inflicted Injury in Medicare Enrolled Autistic Adults With and Without Co-occurring Intellectual Disability.

Suicidality is significantly more common in autistic adults than the general population, yet the factors that increase risk for suicidality among autistic adults remain largely unknown. We identified characteristics associated with suicidal ideation and suicide attempts/self-inflicted injury in a U.S. national sample of Medicare-enrolled autistic adults. We conducted a case-control study of autistic adults aged 18-59 years (n = 21,792). Younger age, white race, depression disorders, and psychiatric healthcare utilization were associated with increased odds of suicidal ideation and suicide attempts. Co-occurring intellectual disability was associated with significantly greater odds of a suicide attempt, but lower odds of suicidal ideation. Findings underscore the need for improved methods to identify ideation prior to attempt among adults with autism and intellectual disability.

Can Cartoons Which Depict Autistic Characters Improve Attitudes Towards Autistic Peers?

This study aimed to assess the efficacy of two cartoons which depict autistic characters in improving attitudes towards autistic peers in two separate studies. Forty-six children participated in study 1 (4-7 years), and 47 children participated in study 2 (8-11 years). Both the conative (behavioural) component of attitudes and knowledge about autism were measured before and after the cartoon interventions. Knowledge of autism increased after watching the cartoons in both studies but attitudes to autism only improved in study 1. Knowledge was shown to correlate with change in some but not all attitude measures. The findings suggest that cartoons can improve attitudes to autism, but this may depend on how information is presented.

Autistic traits influence the strategic diversity of information sampling: Insights from two-stage decision models.

Information sampling can reduce uncertainty in future decisions but is often costly. To maximize reward, people need to balance sampling cost and information gain. Here we aimed to understand how autistic traits influence the optimality of information sampling and to identify the particularly affected cognitive processes. Healthy human adults with different levels of autistic traits performed a probabilistic inference task, where they could sequentially sample information to increase their likelihood of correct inference and may choose to stop at any moment. We manipulated the cost and evidence associated with each sample and compared participants' performance to strategies that maximize expected gain. We found that participants were overall close to optimal but also showed autistic-trait-related differences. Participants with higher autistic traits had a higher efficiency of winning rewards when the sampling cost was zero but a lower efficiency when the cost was high and the evidence was more ambiguous. Computational modeling of participants' sampling choices and decision times revealed a two-stage decision process, with the second stage being an optional second thought. Participants may consider cost in the first stage and evidence in the second stage, or in the reverse order. The probability of choosing to stop sampling at a specific stage increases with increasing cost or increasing evidence. Surprisingly, autistic traits did not influence the decision in either stage. However, participants with higher autistic traits inclined to consider cost first, while those with lower autistic traits considered cost or evidence first in a more balanced way. This would lead to the observed autistic-trait-related advantages or disadvantages in sampling optimality, depending on whether the optimal sampling strategy is determined only by cost or jointly by cost and evidence.

Guided self-help for depression in autistic adults: the ADEPT feasibility RCT.

BACKGROUND: Co-occurring depression frequently occurs in autism. Evidence-based psychological interventions have been successfully adapted to treat co-occurring anxiety, but there is little evidence about the usefulness of adapted cognitive-behavioural therapy for depression. To the authors' knowledge, to date there have been no randomised trials investigating the usefulness of low-intensity cognitive-behavioural therapy for depression in autism. OBJECTIVES: The objectives of the study were to (1) develop a low-intensity psychological intervention for depression adapted for autism, (2) assess the feasibility and patient and therapist acceptability of the intervention, (3) estimate the rates of recruitment and retention for a full-scale randomised controlled trial and (4) identify an appropriate measure of depression to be used in a full-scale randomised controlled trial. DESIGN: The study comprised a randomised controlled trial (n = 70) with a nested qualitative evaluation (n = 21). Seventy eligible and consenting participants were randomly allocated to guided self-help or to treatment as usual. SETTING: Adult autism services in two NHS regions. PARTICIPANTS: Adults with a diagnosis of autism spectrum disorder with depression, that is, a Patient Health Questionnaire-9 items score of ≥ 10. People who had attended more than six sessions of cognitive-behavioural therapy in the previous 6 months were excluded. INTERVENTIONS: The low-intensity intervention (guided self-help) comprised materials for nine individual sessions, based on behavioural activation adapted for autism, facilitated by therapist guides (coaches) who were graduate-level psychologists who attended training and regular supervision. Treatment as usual was standard NHS care for depression. MAIN OUTCOME MEASURES: Outcomes were measured 10, 16 and 24 weeks post randomisation using self-report and interview measures of depression, anxiety, obsessive-compulsive symptoms, social function and quality of life, and a health-care and service use questionnaire. As this was a feasibility study also designed to identify the most appropriate measure of depression, it was not possible to specify the primary outcome measure or outcome point a priori. RESULTS: The aims of the study were met in full. The guided self-help intervention was feasible and well received by participants and coaches. The majority of allocated participants attended the intervention in full. The most practical outcome point was determined to be 16 weeks. There were differential rates of attrition across the treatment groups: 86% of the guided self-help group remained in the study at 24 weeks, compared with 54% of treatment as usual group. The qualitative study suggested that guided self-help had enhanced credibility with participants at the point of randomisation. Inter-rater reliability of the interview measure of depression was less than adequate, limiting the conclusions that can be drawn from the prespecified sensitivity to change analyses. CONCLUSIONS: The intervention was feasible and well received. Although this feasibility study was not a fully powered trial, it provided some evidence that the guided self-help intervention was effective in reducing depressive symptoms. A full-scale clinical effectiveness and cost-effectiveness trial of the intervention is warranted. FUTURE WORK: Improvements to the intervention materials as a result of qualitative interviews. Stakeholder consultation to consider future trial design, consider strategies to improve retention in a treatment as usual arm and select a self-report measure of depression to serve as the primary outcome measure. TRIAL REGISTRATION: Current Controlled Trials ISRCTN54650760. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 68. See the NIHR Journals Library website for further project information. This study was also supported by the NIHR Biomedical Research Centre at the University Hospitals Bristol NHS Foundation Trust and the University of Bristol.

The National Institute for Health Research commissioned research to investigate whether or not NHS psychological treatment for depression could be adapted for autistic people. Psychological treatment for anxiety can be helpful for autistic people if it is adapted to meet their needs, but there has been less research into such treatment for depression. We developed a treatment called guided self-help, which comprised materials for nine individual sessions and a manual to help the therapist guides work alongside autistic people. Two autistic people helped us to improve the session materials we had developed. The guides attended 2 days of training on how to deliver guided self-help. Seventy adults with a diagnosis of autism spectrum disorder and depression agreed to take part in the study. They were randomly allocated to guided self-help or to treatment as usual. Treatment as usual means whatever treatment would usually be available. We asked these adults to complete measures of depression, anxiety and other psychological symptoms, as well as their use of health and social care services, before treatment. We asked them to complete these measures again 10, 16 and 24 weeks later. We also invited them to take part in interviews about their experiences of the study. People who had guided self-help attended the treatment to the end and said that they found it acceptable and helpful. They suggested ways to improve the treatment materials. More people in the guided self-help group than in the treatment-as-usual group completed the 16- and 24-week follow-ups. Just over half of the people in the treatment-as-usual group did not attend the 16- and 24-week follow-ups. This would be a problem in a larger trial because we would not have enough information about the treatment-as-usual group to know if people in this group were doing better or worse than those in the guided self-help group. The findings of this study suggest that a larger trial to find out if guided self-help is effective in treating depression in autism would be helpful.

Narratives About Autism: An Analysis of YouTube Videos by Individuals Who Self-Identify as Autistic.

Purpose The goal of this study was to expand the field's understanding of autism through the analysis of 1st-person perspectives from autistic video webloggers (vloggers). Method This study analyzed the representation of autism in 39 YouTube videos authored by self-identified autistic individuals and published between 2007 and 2015. Consistent with the cross-disciplinary tradition of narrative inquiry, thematic analyses of the video transcripts were conducted. Findings Vloggers were predominantly, but not exclusively, White male adults who spoke mainstream American English and self-identified as experiencing Asperger's syndrome. Key findings included (a) the predominance of a narrative about autism that incorporated features of both the medical model of disability and the neurodiversity paradigm to varying degrees, (b) a trend toward more medical model features across most content areas, and (c) a relatively high prevalence of neurodiversity paradigm features related specifically to language use and the description of autistic traits. Conclusions Implications include the need for clinicians to (a) familiarize themselves with the varying views of autism held within the autistic community, (b) reflect on the language used to talk about autism and listen to how clients and/or their caregivers talk about it, and (c) consider the exploration of potential positive dimensions of autistic traits.

Disparities Based on Race, Ethnicity, and Socioeconomic Status Over the Transition to Adulthood Among Adolescents and Young Adults on the Autism Spectrum: a Systematic Review.

PURPOSE OF REVIEW: Few studies have examined disparities in autism services and functional outcomes over the life course. Transition to adulthood is an especially important developmental period, as it sets up trajectories of adult functioning. This systematic review summarizes patterns of service use and transition outcomes according to race, ethnicity, and socioeconomic characteristics over the transition to adulthood. RECENT FINDINGS: Forty studies were included. Low-income and racial/ethnic minority youth on the autism spectrum were less likely to participate in transition planning meetings, enroll in postsecondary education, find competitive employment after high school, live independently, participate in social activities, and receive health care transition services than their White and higher income peers on the autism spectrum. Racial/ethnic minority and low-income youth on the autism spectrum were more likely to be disconnected from educational, occupational, and social activities upon entering adulthood. Future research should explore the mechanisms underlying these disparities as a first step to addressing them.