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.

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.

Associations between co-occurring conditions and age of autism diagnosis: Implications for mental health training and adult autism research.

Adult autism studies are increasingly comprised of later-diagnosed adults, yet little is known about how these adults compare to those diagnosed earlier in life. The present study examines medical and psychiatric conditions endorsed by autistic adults and documents differences between those diagnosed with ASD in childhood versus adulthood, as well as across age groups and sex at birth. 4657 legally independent adults (ages 18-85, M = 33.4 years) with professional ASD diagnoses who completed a medical questionnaire were drawn from the Simons Powering Autism Research Knowledge (SPARK) study. Chi square analyses, t-tests, and logistic regressions were used to compare medical and psychiatric conditions between age groups, sex at birth and adults diagnosed in childhood (before age 21) versus adulthood (at or after 21 years). Overall number of conditions endorsed as being diagnosed by a professional was high, with an average of 1.69 (SD = 2.01) medical or developmental and 2.98 (SD = 2.29) psychiatric conditions reported across the sample. Females were more likely to endorse psychiatric conditions (OR = 1.68). Adult-diagnosed adults were more likely to endorse psychiatric conditions (OR = 2.71) and reported more lifetime psychiatric diagnoses (M = 3.15, SD = 2.23) than their childhood-diagnosed counterparts (M = 2.81, SD = 2.33). These findings underscore the need for research to better understand and treat co-occurring psychiatric conditions in autistic adults and report and consider the age of diagnosis in adult autism samples. Moreover, results suggest it is imperative that mental health professionals receive autism training to promote accurate differential diagnosis and equitable access to mental health care for autistic adults with co-occurring psychiatric conditions.

Engrailed 2 deficiency and chronic stress alter avoidance and motivation behaviors.

Autism spectrum disorder (ASD) is a pervasive neurodevelopmental disorder characterized by impairments in social interaction, cognition, and communication, as well as the presence of repetitive or stereotyped behaviors and interests. ASD is most often studied as a neurodevelopmental disease, but it is a lifelong disorder. Adults with ASD experience more stressful life events and greater perceived stress, and frequently have comorbid mood disorders such as anxiety and depression. It remains unclear whether adult exposure to chronic stress can exacerbate the behavioral and neurodevelopmental phenotypes associated with ASD. To address this issue, we first investigated whether adult male and female Engrailed-2 deficient (En2-KO, En2-/-) mice, which display behavioral disturbances in avoidance tasks and dysregulated monoaminergic neurotransmitter levels, also display impairments in instrumental behaviors associated with motivation, such as the progressive ratio task. We then exposed adult En2-KO mice to chronic environmental stress (CSDS, chronic social defeat stress), to determine if stress exacerbated the behavioral and neuroanatomical effects of En2 deletion. En2-/- mice showed impaired instrumental acquisition and significantly lower breakpoints in a progressive ratio test, demonstrating En2 deficiency decreases motivation to exert effort for reward. Furthermore, adult CSDS exposure increased avoidance behaviors in En2-KO mice. Interestingly, adult CSDS exposure also exacerbated the deleterious effects of En2 deficiency on forebrain-projecting monoaminergic fibers. Our findings thus suggest that adult exposure to stress may exacerbate behavioral and neuroanatomical phenotypes associated with developmental effects of genetic En2 deficiency.