Assessment of Social Connection among Autistic and Non-Autistic Adults: A Proof of Concept Study for the Connections with Others Scales.

BACKGROUND: A gap exists in measures available to assess levels of motivation, desire, and value associated with connecting with others. Moreover, few social connection scales have been developed with a goal of including autistic individuals in the sample to create a measure that has utility across neurodiverse populations. This study aims to develop a measure to assess different facets of social connection that is valid among both autistic and non-autistic adults. METHODS: The sample consisted of 200 participants recruited online. Participants completed an initial set of 35 items. Exploratory factor analyses and confirmatory factor analyses were performed. Four-factor models were produced by the EFAs. RESULTS: Item reduction resulted in the development of two 8-item scales: the Connections with Others Scale (CWOS) intended for the general population and the CWOS-Autistic Version (CWOS-AV) intended for autistic populations (CWOS-AV). Autistic participants had significantly greater motivation/desire to connect with others compared to non-autistic participants (t(195) = 3.39; p < 0.001). CONCLUSIONS: These measures will allow for greater ability to assess the motivation to connect with others, resulting in improved ability to produce research that clarifies theories and describes psychological phenomena.

Benefit or Problem: Exploration of How Response Options Affect Self-Reported Behaviors and Interests in Autistic Adults.

Assessment of restricted, repetitive behaviors (RRB) in autism evaluations often assumes that these behaviors negatively impact the individual. Qualitative studies of first-person accounts indicate the negative impact of the stigma associated with RRBs but also provide insights into the positive aspects. The current study explores how framing response options as negative (i.e., level of problem associated with occurrence) or positive (i.e., level of benefit associated with occurrence) affects RRB self-reports in autistic adults. Sixty-six autistic adults aged 18-59 filled out the Repetitive Behavior Scale-Revised (RBS-R) and a modified RBS-R+, assessing problems and benefits of reported behaviors, respectively. There was a moderate to strong correlation between the forms, each assessing problems and benefits in terms of the number of behaviors endorsed (r = 0.746) and the levels of benefits and problems (r = 0.637). Autistic adults reported a higher number of RRBs in the form that assessed problems, but the number of behaviors was comparable between the forms when counting in the response option of the occurrence of behavior without having a benefit. Despite some variability in the level of problems and the benefits across the subdomains of RRB, autistic adults largely rated comparable levels of associated benefits and problems, highlighting the complexity of RRBs as having both positive and negative impacts. Future screening and diagnostic tools for adults should aim to assess both positive and negative aspects of autistic features to afford a more nuanced understanding of individual experiences while still yielding diagnostically relevant information. Qualitative studies are needed to better understand the complex experiences associated with these behaviors; however, it may be important to ensure that options for endorsement of behaviors without a specific benefit are also needed to ensure some behaviors (e.g., self-injurious behaviors) are not missed.

The impact of measurement on clinical trials: Comparison of preliminary outcomes of a brief mobile intervention for autistic adults using multiple measurement approaches.

Initial studies of the emotional safety plan (ESP), a new, brief telehealth and mobile intervention to support autistic adults to cope with periods of distress, have reported feasibility and acceptability (Bal et al., 2023, Autism, 1-13). Herein we report the preliminary clinical outcomes of thirty-six autistic adults who developed a personalized ESP, with a specific interest in comparing "outcomes" demonstrated by different instruments and assessment frequencies in order to inform outcome measurement in future clinical trials. Comparison of pre-intervention baseline to post-monitoring outcome (pre-post) anxiety symptoms (Generalized Anxiety Disorder-7 [GAD-7]) and depressive symptoms (Patient Health Questionnaire-9 [PHQ-9]) revealed medium effect sizes for reduction in symptoms, though, low effect sizes were observed for pre-post Adult Self-report Anxiety and Depressive Problems scales and the Emotion Dysregulation Inventory Reactivity and Dysphoria scales. Weekly assessments showed an initial decrease in GAD-7 anxiety symptoms but no effect on weekly PHQ-9 depressive ratings. Ecological momentary assessment (EMA) data suggested that, when participants reported feeling sad or agitated and used the ESP, reduced negative feelings and increased positive states were reported in subsequent EMA. Perhaps not surprisingly, preliminary outcomes of these feasibility trials differed depending on measure chosen. Implications for the design of clinical trials are discussed.

Psychometric exploration of the RAADS-R with autistic adults: Implications for research and clinical practice.

LAY ABSTRACT: Surveys used to screen for autism are being used much more by adults. Adults and clinicians want to be confident that the results from their surveys are accurate. If scores are not accurate, it is not possible to compare the scores of different groups of individuals. There are also concerns that these surveys do not accurately identify autistic individuals. This study explored the accuracy of two commonly used autism screening surveys for adults: the RAADS-R and the RAADS-14. The accuracy of these two screening tools was measured using a sample of 839 adults. Adults in the study were in one of the following categories: (1) diagnosed with autism, (2) adults who considered themselves to be autistic but had not been diagnosed, (3) adults who were unsure whether they were autistic, and (4) adults who did not consider themselves to be autistic and had not been diagnosed. The study found that the RAADS-R and the RAADS-14 are accurate. The study also found that a person's age, gender, autism diagnosis, or whether an individual considered themselves to be autistic did not impact how they understood the survey. Survey accuracy could be improved by changing the number of question responses from four to two. Importantly, individuals with a clinical diagnosis of autism and those who considered themselves to be autistic responded to survey items in a very similar way. Individuals with autism diagnoses and those who were unsure whether they were autistic were more different in their responses. Four specific survey items related to sensory experiences and social interaction identified key differences between autistic and non-autistic adults.

The emotional support plan: Feasibility trials of a brief, telehealth-based mobile intervention to support coping for autistic adults.

LAY ABSTRACT: Autistic adults may have difficulty coping during stressful periods, which could make them more vulnerable to depression and anxiety. We designed the emotional support plan (ESP) to help autistic people find ways to cope in stressful situations. Thirty-six autistic adults created an ESP and answered questions about their opinions of the ESP. Most autistic adults found the ESP to have a positive impact on them and many would recommend the ESP to another person. Feedback from autistic adults suggested ways that we might test the ESP in future studies. Overall, autistic adults in this study found the ESP to be useful and a worthwhile intervention to study more in the future. While more research is clearly needed, we hope that the brief nature of the ESP will make it helpful for autistic people who are trying to handle negative feelings during stressful life events.

Factor structure of the VABS-3 Comprehensive Parent/Caregiver form in autistic individuals: Poor fit of three-factor and unidimensional models.

LAY ABSTRACT: Adaptive behavior is a broad set of skills needed to function in everyday life. The Vineland Adaptive Behavior Scales (VABS-3) is commonly used to measure adaptive behavior. It divides adaptive behavior into three domains, Communication, Daily Living Skills, and Socialization, each of which are split into subdomains. Analyses of this three-part structure of the first version of VABS used the instrument as an interview, but now it is done as a questionnaire as well. The structure has not been well supported in samples of autistic people, who often have different strengths and challenges in adaptive behavior compared with non-autistic people. Because adaptive behavior is an important concept in autism research and online-administered questionnaires are increasingly common, it is important to ensure the structure of the VABS-3 Comprehensive Parent/Caregiver Form (VABS-3:CPCF; a questionnaire) works well for autistic individuals across a range of abilities. This study aimed to investigate whether VABS-3:CPCF measures adaptive behavior similarly in verbal and minimally verbal autistic people. However, the data didn't fit the structure in the first step of the analysis, so this could not be investigated. The next analyses also found the three-domain structure didn't fit in different age and language groups. In addition, the data didn't fit a structure combining all the domains into 1 (unidimensional). These results suggest that neither the three-factor or unidimensional structure fit the VABS-3:CPCF, cautioning against interpretation of domain or overall adaptive behavior composite scores in autistic individuals and further encouraging careful consideration of administration format.

Measuring autism-associated traits in the general population: Factor structure and measurement invariance across sex and diagnosis status of the Social Communication Questionnaire.

LAY ABSTRACT: Using questionnaires in research relies on the expectation that they measure the same things across different groups of individuals. If this is not true, then interpretations of results can be misleading when researchers compare responses across different groups of individuals or use in it a group that differs from that in which the questionnaire was developed. For the questionnaire we investigated, the Social Communication Questionnaire (SCQ), we found that parents of boys and girls responded to questionnaire items in largely the same way but that the SCQ measured traits and behaviors slightly differently depending on whether the children had autism. Based on these results, we concluded that researchers using this questionnaire should carefully consider these differences when deciding how to interpret findings. SCQ scores as a reflection of "autism-associated traits" in samples that are mostly or entirely made up of individuals without an autism diagnosis may be misleading and we encourage a more precise interpretation of scores as a broader indication of social-communicative and behavioral traits.

Rare X-linked variants carry predominantly male risk in autism, Tourette syndrome, and ADHD.

Autism spectrum disorder (ASD), Tourette syndrome (TS), and attention-deficit/hyperactivity disorder (ADHD) display strong male sex bias, due to a combination of genetic and biological factors, as well as selective ascertainment. While the hemizygous nature of chromosome X (Chr X) in males has long been postulated as a key point of "male vulnerability", rare genetic variation on this chromosome has not been systematically characterized in large-scale whole exome sequencing studies of "idiopathic" ASD, TS, and ADHD. Here, we take advantage of informative recombinations in simplex ASD families to pinpoint risk-enriched regions on Chr X, within which rare maternally-inherited damaging variants carry substantial risk in males with ASD. We then apply a modified transmission disequilibrium test to 13,052 ASD probands and identify a novel high confidence ASD risk gene at exome-wide significance (MAGEC3). Finally, we observe that rare damaging variants within these risk regions carry similar effect sizes in males with TS or ADHD, further clarifying genetic mechanisms underlying male vulnerability in multiple neurodevelopmental disorders that can be exploited for systematic gene discovery.

Factors that Influence the Daily Living Skills of Autistic Adults: The Importance of Opportunity.

While existing literature has demonstrated that Daily Living Skills (DLS) performance of autistic individuals is lower than what is expected of their age and cognitive abilities, limited studies have examined DLS in autistic adults. This study aimed to understand the influence of intellectual function (IQ) and contextual factors (i.e., provision of opportunities) on autistic individuals' DLS performance. Participants included 33 autistic individuals ranging in age from 16 to 35 years. Their caregivers were administered the Vineland Adaptive Behavior Scales, 3rd edition's (Vineland-3) caregiver interview form. A novel coding system was developed to capture the frequency of reasons for participants' non-performance of DLS tasks, based on caregiver's report. "Target" scores reflecting expected possible score if reasons for nonperformance could be addressed were computed. Qualitative analysis of parental responses indicated that, for adults with average or higher IQ, lack of opportunity to learn and/or implement the skill was the most frequent reason for not performing DLS. Lack of opportunity was also the second most common reason provided for adults with NVIQ below 85, following cognitive ability. Taking into account reasons for nonperformance, "Target" scores were, on average, 7.65 points higher for the NVIQ ≥ 85 group. These findings highlight a need for multi-dimensional assessment to go beyond individual strengths and difficulties to also include contextual factors that may influence adults' skill acquisition and performance. It is essential that clinicians ensure that adequate opportunities for learning and performance are available to promote acquisition of important DLS.

Mechanisms of change in Behavioral Activation: Adapting depression treatment for autistic people.

Despite high rates of co-occurring depression, few studies have developed or adapted treatments targeting depressive symptoms for autistic adults. Behavioral activation is widely accepted as an empirically-supported approach for treating depression in other populations. Careful attention to the mechanisms targeted by behavioral activation is an essential step toward adapting behavioral activation protocols for use with autistic adults. We consider the mechanisms targeted by behavioral activation and provide a framework for research to explore the facilitators and barriers to the use of behavioral activation to treat depression in autistic adults. Drawing upon clinical experience and extant literature, the suggestions presented are aimed at highlighting considerations for clinicians wanting to use behavioral activation programs in their clinical practices with autistic adults and to promote the research needed to establish behavioral activation as an evidence-based practice for treating depression in adults on the autism spectrum.