Are autistic females at greater risk of suicide? A call for clarity to advance suicide prevention for the whole community.

Understanding suicide risk is critical for supporting prevention. A growing body of evidence shows autistic people are at greater risk for multiple suicide-related outcomes than non-autistic people. This commentary is in response to an observed pattern of miscommunication in scientific and community spaces about autistic females having higher risk of suicide. However, it is not always clear who they are being compared with in these statements. To address this confusion, we summarize the current population-based evidence on autistic suicide risk, highlighting findings related to sex similarities and differences, which actually indicates comparable rates of suicide death among autistic males and females, and mixed findings related to sex differences in risk of other suicidal behaviors. We call for greater clarity in suicide risk communication moving forward focused on outcomes, measurement, sampling methods, and comparison groups to reflect accurate conclusions about existing evidence. Further research is needed about the full range of suicide-related outcomes for autistic people, including a greater understanding of sex differences as well as potential gender differences to include transgender and nonbinary autistic people. However, studies of sex and gender differences should not overshadow the compelling need for efforts to understand and address the elevated risk of suicidal thoughts, behaviors, and death among autistic people across sex and gender boundaries.

Developing a Measure of Key Adult Outcomes in Adults with Developmental Disabilities: Conceptual Model and Item Generation of the REALS (Relationships, Employment, Autonomy, and Life Satisfaction).

Employment, social relationships, and autonomy are priorities to people with intellectual and developmental disabilities (IDDs). However, few validated measures exist to systematically assess these key adult outcomes in this population. This research includes first steps to develop self- and proxy report measures of life outcomes for adults with IDDs-the Relationships, Employment, Autonomy, and Life Satisfaction (REALS). A literature search identified existing adult outcome measures, and comparison of their domains informed initial conceptual model development. External consultants revised the model, and items were generated. Autistic adults (n = 15), adults with other IDDs (n = 7), caregivers of autistic adults (n = 13), and caregivers of adults with other IDDs (n = 10) completed in-depth cognitive interviews to assess comprehension of items and response categories, factors influencing how participants respond to items, and the inclusiveness of the item pool. A final conceptual model was generated with three subdomains (social relationships, employment, and autonomy), including assessment of life satisfaction within each domain. Cognitive interviews revealed that response set restructuring and item-level revisions were needed to capture the complexity of adult life and make the measure more accessible across a range of abilities. This study developed a conceptual model of relationships, work, and autonomy specific to adults with IDDs. Future work will involve collecting data from 800 + self-reporters with IDDs and 800 + caregivers of adults with IDDs to conduct psychometric analyses. Improving measurement in this area is critical to better understanding the needs of adults with IDDs and improving services available to them.

Feedback Related Negativity Amplitude is Greatest Following Deceptive Feedback in Autistic Adolescents.

The purpose of this study is to investigate if feedback related negativity (FRN) can capture instantaneous elevated emotional reactivity in autistic adolescents. A measurement of elevated reactivity could allow clinicians to better support autistic individuals without the need for self-reporting or verbal conveyance. The study investigated reactivity in 46 autistic adolescents (ages 12-21 years) completing the Affective Posner Task which utilizes deceptive feedback to elicit distress presented as frustration. The FRN event-related potential (ERP) served as an instantaneous quantitative neural measurement of emotional reactivity. We compared deceptive and distressing feedback to both truthful but distressing feedback and truthful and non-distressing feedback using the FRN, response times in the successive trial, and Emotion Dysregulation Inventory (EDI) reactivity scores. Results revealed that FRN values were most negative to deceptive feedback as compared to truthful non-distressing feedback. Furthermore, distressing feedback led to faster response times in the successive trial on average. Lastly, participants with higher EDI reactivity scores had more negative FRN values for non-distressing truthful feedback compared to participants with lower reactivity scores. The FRN amplitude showed changes based on both frustration and reactivity. The findings of this investigation support using the FRN to better understand emotion regulation processes for autistic adolescents in future work. Furthermore, the change in FRN based on reactivity suggests the possible need to subgroup autistic adolescents based on reactivity and adjust interventions accordingly.

Emotion Regulation and Executive Function: Associations with Depression and Anxiety in Autism.

Background: Adolescents and young adults with autism spectrum disorder (ASD) are prone to experience co-occurring mental health conditions such as mood or anxiety disorders, as well as impairments in emotion regulation and executive functioning. However, little research has examined inter-relationships among these constructs, despite evidence of additional stressors and increased risk of internalizing disorders at this age, relative to non-autistic individuals. If either emotion regulation or executive functioning are shown to have patterns of association with mental health, this can inform mechanism-based intervention. Method: Fifty-seven autistic adolescents and adults (16-25 years) with ASD in a transition intervention completed questionnaires and clinician-administered measures at baseline. Analyses assessed whether executive functioning impairment, above and beyond emotion regulation impairment, were associated with depression and anxiety symptoms. Results: ASD characteristics, emotion regulation, anxiety, and depression were significantly correlated. ASD characteristics was a significant contributor to depression and emotion regulation impairments were significant contributors to anxiety and depression. Findings indicated that inhibition difficulties did not uniquely contribute to depression or anxiety above emotion regulation impairment. Difficulties in cognitive flexibility were associated with depression above and beyond ASD characteristics, IQ, and emotion regulation, but not associated with anxiety. Conclusions: Although preliminary, findings suggest that inflexibility and regulatory impairment should be considered in depression remediation approaches. Improving ER, on the other hand, may have broader transdiagnostic impact across both mood and anxiety symptoms in ASD.

Brief Report: Creation of a Transition Readiness Scale for Adolescents with ASD.

The transition to postsecondary education is characterized by many changes for adolescents with autism spectrum disorder (ASD). A data-based understanding of a student's readiness for postsecondary education could help students, and their parents, better prepare for this life transition. The Transition Readiness Scale (TRS) was created to address this need. The TRS is a self/other-report questionnaire used to assess postsecondary readiness across behavioral, cognitive, and emotional domains among adolescents 15-18 years of age. The present study details measure development and provides preliminary psychometric properties in a sample of transition-aged youth with ASD. Results indicate strong internal consistency, adequate item-level analyses, and discriminant and concurrent validity. Future validation of the TRS in large-scale field testing is merited to inform clinical interpretation.

The role of emotion dysregulation and intolerance of uncertainty in autism: Transdiagnostic factors influencing co-occurring conditions.

BACKGROUND: Individuals with autism spectrum disorders (ASD) are more likely to have co-occurring psychiatric conditions such as depression and anxiety. Transdiagnostic constructs such as intolerance of uncertainty (IU) and emotion dysregulation (ED) have both been shown to be individually associated with depression and anxiety in those with ASD. AIMS: The current study examined the relationship between IU and ED, depression, and anxiety in an ED treatment-seeking sample and examined whether ED acts as a mediator between IU-depression and IU-anxiety. METHODS AND PROCEDURES: We examined baseline scores for 78 adolescents and young adults (12-21 years old) who were participating in an ED treatment. We assessed for correlations between IU, Reactivity and Dysphoria, anxiety, and depression symptoms, and then conducted mediation analyses to determine whether Reactivity and Dysphoria functioned as a mediator in IU- anxiety and IU- depression relationships. OUTCOMES AND RESULTS: Concordant with prior research, ED, IU, anxiety, and depression scores were correlated. Both Reactivity and Dysphoria were found to mediate both IU-depression and IU-anxiety. CONCLUSIONS AND IMPLICATIONS: Findings suggest that ED contributes to how IU affects psychopathology. Furthermore, both IU and ED may be pertinent treatment targets for individuals with depression or anxiety and ASD.

Stakeholder informed development of the Emotion Awareness and Skills Enhancement team-based program (EASE-Teams).

LAY ABSTRACT: Emotion dysregulation (ED) impacts mental health symptoms and well-being in autistic individuals. In prior work, we developed the Emotion Awareness and Skills Enhancement (EASE) to improve emotion dysregulation with autistic adolescents (aged 12-17). The study team partnered with autistic individuals, their caregivers, and expert clinicians to adapt EASE for autistic adolescents and adults with co-occurring intellectual disability and autistic elementary-aged children, groups that often benefit from caregiver support in treatment. In three phases, we (1) gathered caregiver and expert feedback to adapt the original EASE program for autistic adults with intellectual disability, (2) revised the treatment after using it with six autistic adults with intellectual disability, and (3) tested the newly developed caregiver-client team-based treatment, called EASE-Teams, in a small group of 10 autistic individuals with and without intellectual disability (aged 7-25). Families found EASE-Teams to be acceptable and helpful. We found improvements in emotion dysregulation and mental health symptoms for autistic participants. Caregivers reported less stress from their child's dysregulation after participating. These results show that EASE-Teams can be appropriate for different developmental and cognitive needs. Future studies will need to test the benefits of the treatment in community clinics.

Evidence Base Update for Questionnaires of Emotion Regulation and Reactivity for Children and Adolescents.

Objective: Emotion regulation (ER) is a multi-faceted and dynamic process relevant to both normative emotional development and transdiagnostic emotional dysfunction for a range of psychological disorders. There has been tremendous growth in ER research over the past decade, including the development of numerous new measures to assess ER. This Evidence Base Update included a systematic review to identify self- and informant-report questionnaire measures of ER for children and adolescents, including measures of ER strategies and effectiveness (or emotion dysregulation).Methods: PubMed, PsycInfo, and Health and Psychosocial Instruments databases were searched using the terms emotion OR affect AND regulation OR control OR reactivity OR response, as well as terms related to questionnaires and psychometrics, restricted to articles on youth (< 18 years old). Each measure's psychometrics was evaluated based on modified criteria by De Los Reyes and Langer (2018).Results: Nine-hundred ninety-seven papers were identified yielding 87 measures that met inclusion for review. Although the majority (60%) of identified ER measures could not be recommended based on these criteria, 8% were Excellent, 14% were Good, and 17% were Adequate. The recommended measures included: 11 general ER measures (5 focused on strategies, 5 focused on dysregulation/ effectiveness), 13 measures of ER as it relates to specific emotions or contexts such as irritability or peer stress (4 focused on strategies, 9 focused on dysregulation/effectiveness), and 11 measures of other constructs that include an ER subscale (all focused on dysregulation). Conclusions: The characteristics, strengths, and weaknesses of the recommended ER measures are described in order to guide measure selection for clinical or research uses. A synthesis of themes identified during this review includes commonly observed areas of weakness and gaps in the literature to provide a foundation for future research and measure development.

Emotion Dysregulation is Substantially Elevated in Autism Compared to the General Population: Impact on Psychiatric Services.

Emerging evidence suggests that emotion regulation (ER) impairment in those with ASD is associated with poor mental health. This study used the Emotion Dysregulation Inventory, a new norm-referenced ER measure with clinical cut-offs, developed and validated in ASD and non-ASD samples, to establish rates of ER impairment and understand its association with psychiatric service use in ASD. Parents of 6-17 year olds in three well-characterized samples (nationally representative US n = 1,000; community ASD n = 1,169; inpatient ASD n = 567) completed a battery of questionnaires about their child. The prevalence of ER impairment was significantly higher in the ASD groups compared to the nationally representative sample and highest in the psychiatric Inpatient ASD group. The community ASD and inpatient ASD samples were four and seven times more likely, respectively, to exceed clinical cutoffs for emotional reactivity than the general US sample. Similarly, history of psychiatric hospitalization, recent emergency services use (police contact, emergency room visits, or in-home crisis evaluations for emotional or behavioral concerns in the past 2 months), and psychotropic medication prescriptions were significantly higher in the ASD groups. ER impairment was significantly associated with all forms of psychiatric service use, after controlling for demographics (age, sex, race), co-occurring intellectual disability, and ADHD symptoms. This is the first large-scale study to document substantially higher rates of ER impairment in youth with ASD compared to the general population. The importance of ER impairment is underscored by its association with higher utilization of inpatient, emergency, and medication services in ASD, after accounting for demographics and ADHD-related symptoms.

Trial by trial EEG based BCI for distress versus non distress classification in individuals with ASD.

Autism spectrum disorder (ASD) is a neurodevelopmental disorder that is often accompanied by impaired emotion regulation (ER). There has been increasing emphasis on developing evidence-based approaches to improve ER in ASD. Electroencephalography (EEG) has shown success in reducing ASD symptoms when used in neurofeedback-based interventions. Also, certain EEG components are associated with ER. Our overarching goal is to develop a technology that will use EEG to monitor real-time changes in ER and perform intervention based on these changes. As a first step, an EEG-based brain computer interface that is based on an Affective Posner task was developed to identify patterns associated with ER on a single trial basis, and EEG data collected from 21 individuals with ASD. Accordingly, our aim in this study is to investigate EEG features that could differentiate between distress and non-distress conditions. Specifically, we investigate if the EEG time-locked to the visual feedback presentation could be used to classify between WIN (non-distress) and LOSE (distress) conditions in a game with deception. Results showed that the extracted EEG features could differentiate between WIN and LOSE conditions (average accuracy of 81%), LOSE and rest-EEG conditions (average accuracy 94.8%), and WIN and rest-EEG conditions (average accuracy 94.9%).

Assessment and Treatment of Emotion Regulation Impairment in Autism Spectrum Disorder Across the Life Span: Current State of the Science and Future Directions.

Emotion regulation (ER) is the ability to modify arousal and emotional reactivity to achieve goals and maintain adaptive behaviors. ER impairment in autism spectrum disorder (ASD) is thought to underlie many problem behaviors, co-occurring psychiatric symptoms, and social impairment, and yet is largely unaddressed both clinically and in research. There is a critical need to develop ER treatment and assessment options for individuals with ASD across the life span, given the multitude of downstream effects on functioning. This article summarizes the current state of science in ER assessment and treatment and identifies the most promising measurement options and treatments.

Improving Transition to Adulthood for Students with Autism: A Randomized Controlled Trial of STEPS.

Emerging adulthood is a period of heightened risk for young people with autism spectrum disorder (ASD). Due in part to a lack of evidence-based services and supports during the transition to adulthood, many emerging adults fail to matriculate into postsecondary education or thrive in productive employment. The Stepped Transition in Education Program for Students with ASD (STEPS) was developed to address the psychosocial, transition-related needs of emerging adults with ASD. Adolescents and emerging adults (n = 59) with ASD were randomly assigned to either STEPS or transition as usual (TAU). Results indicate that STEPS is acceptable to young people with ASD and their parents and that it can be implemented with high fidelity. Among secondary school students, those who completed STEPS exhibited significantly greater gains in transition readiness from high school, and these gains were largely sustained after program completion. Among students enrolled in postsecondary education, STEPS resulted in increased levels of student adaptation to college relative to those in TAU. Programming to address ASD-related challenges can promote successful educational transitions.

Mindfulness "Here and Now": Strategies for Helping Adolescents With Autism.

Mindfulness-based interventions (MBIs) are increasingly popular and have a growing empirical basis of support for improving physical and mental health, general functioning, and quality of life. MBIs are an especially attractive approach to improve emotion regulation (ER) in adolescents who have autism spectrum disorder (ASD), as they are thought to directly target ER and can be tailored to individual needs, symptoms, and cognitive capacity. Despite growing interest in MBIs for adolescents with ASD, there are few clinical delivery resources to support clinicians untrained in the use of mindfulness within therapy. This article uses an ASD-specific MBI as an exemplar to outline common challenges and solutions for clinicians using MBIs with adolescents with ER impairment. Mindfulness teaching practices described in this article have been trialed and refined over several years with >40 participants, across three different sites, and with 16 clinicians from four clinical professional backgrounds-most of whom had no prior experience with MBIs-in the Emotion Awareness and Skills Enhancement (EASE) program trials with adolescents with ASD. Although we describe the use of an MBI program with adolescents with ASD, the suggestions offered herein are relevant to use of MBIs with other clinical populations and include basic strategies for mental health professionals untrained in MBIs to enhance delivery to patients with ER impairment.

Assessment and Treatment of Emotion Regulation Impairment in Autism Spectrum Disorder Across the Life Span: Current State of the Science and Future Directions.

Emotion regulation (ER) is the ability to modify arousal and emotional reactivity to achieve goals and maintain adaptive behaviors. ER impairment in autism spectrum disorder (ASD) is thought to underlie many problem behaviors, co-occurring psychiatric symptoms, and social impairment, and yet is largely unaddressed both clinically and in research. There is a critical need to develop ER treatment and assessment options for individuals with ASD across the life span, given the multitude of downstream effects on functioning. This article summarizes the current state of science in ER assessment and treatment and identifies the most promising measurement options and treatments.

The role of emotion regulation and core autism symptoms in the experience of anxiety in autism.

LAY ABSTRACT: Many children with autism spectrum disorder have problems with managing their emotions (emotion regulation) and anxiety. In this study, over 1000 parents completed an online survey which showed that emotion regulation and anxiety are closely linked. Although emotion regulation and anxiety are inter-connected, the results also show that autism symptoms play an important role in anxiety in autism spectrum disorder. Emotion regulation problems may be an important target for the treatment of anxiety in autism.

A Comparative Study of Suicidality and Its Association with Emotion Regulation Impairment in Large ASD and US Census-Matched Samples.

Evidence suggests increased rates of suicidality in autism spectrum disorder (ASD), but the research has rarely used comparison samples and the role of emotion dysregulation has not been considered. We compared the prevalence of parent-reported suicidality ideation and considered the role of emotion dysregulation in 330 psychiatric inpatient youth with ASD, 1169 community youth with ASD surveyed online, and 1000 youth representative of the US census. The prevalence of suicidal ideation was three and five times higher in the community and inpatient ASD samples, respectively, compared to the general US sample. In the ASD groups, greater emotion dysregulation was associated with suicidal ideation. Implications include consideration of emotion regulation as a potential mechanism and treatment target for suicidality in ASD.

Examining the Diagnostic Validity of Autism Measures Among Adults in an Outpatient Clinic Sample.

Background: Previous research has questioned the validity of diagnostic measures for autism spectrum disorder (ASD) among adults. This study examined the correspondence between several measures and clinician diagnosis. Methods: We conducted a retrospective chart review for 93 adults (18-61 years; 72% male) who received an ASD evaluation at a specialty outpatient clinic. Thirty-one individuals (33%) in the sample were diagnosed with ASD. We compared participant scores on the Autism Spectrum Quotient (AQ), the Ritvo Autism Asperger's Diagnostic Scale-Revised (RAADS-R), and the Autism Diagnostic Observation Schedule (ADOS) to clinician diagnosis of ASD. We calculated sensitivity, specificity, and area under the curve (AUC) for each measure. Results: Participants diagnosed with ASD scored significantly higher, on average, on the ADOS than those who were not diagnosed with ASD, but not on the RAADS-R or AQ. The AUC was relatively low for each measure: ADOS = 0.69 (95% confidence interval [CI] 0.58-0.81), RAADS-R = 0.58 (95% CI 0.46-0.72), and AQ = 0.40 (95% CI 0.28-0.52). Sensitivity and specificity of all three measures were in the poor to fair range. When dichotomized at the optimal cutoffs for this sample, the ADOS had a sensitivity of 0.65 and a specificity of 0.76; the RAADS-R had a sensitivity of 0.52 and a specificity of 0.73; and the AQ had a sensitivity of 0.45 and a specificity of 0.52. Conclusions: Results of the study suggest that clinicians should not rely solely on self-report measures or the ADOS when diagnosing adults on the spectrum. Further development of measures is needed, including self-report measures with higher diagnostic validity, that are sensitive across age, gender, and cognitive functioning, and that differentiate autism from psychiatric diagnoses. Lay Summary: Why was this study done?: Diagnosing adults with autism spectrum disorder (ASD) is difficult. Other research has suggested that the few measures that exist for autistic adults may not be very effective for accurate diagnoses. We wanted to see how closely the results of commonly used ASD assessment tools compared with clinical diagnoses in a real-life outpatient setting.What did the researchers do?: This study looked at adults who went to an adult ASD outpatient clinic for an initial ASD diagnosis over 3 years. Of these 93 adults, one-third were diagnosed as autistic. As part of the evaluation, all participants completed two commonly used autism screening surveys-the Autism Spectrum Quotient (AQ) and the Ritvo Autism Asperger's Diagnostic Scale-Revised (RAADS-R)-and took part in a semistructured diagnostic interview called the Autism Diagnostic Observation Schedule (ADOS). The clinicians also collected additional information and, when possible, spoke to family members before jointly making a diagnosis. The researchers compared how those diagnosed with ASD and those who were not diagnosed with ASD scored on the AQ, the RAADS-R, and the ADOS.What were the results of this study?: Although adults on the spectrum scored higher on average on the ADOS clinical interview than those who did not receive an autism diagnosis, they did not score higher on the AQ and RAADS-R self-report measures. All three of the measures were only moderately effective at showing who would be diagnosed with ASD and who was not.What do these findings add to what was already known?: These results confirm and expand on findings from other prior studies. The findings suggest that ASD diagnostic measures should not be used alone or considered the only source of information when making an initial autism diagnosis in adulthood.What are potential weaknesses in the study?: When studying the accuracy of diagnostic tests, it is best to compare the results of the tests being studied with an "independent gold standard," that is, a test that we know is very good and that is totally separate from the tests being studied. In this case, there is no clear "gold standard," so we had to compare the tests with the next best thing-the clinicians' final decision about whether or not a client has a diagnosis of ASD. It is possible that the clinicians did not make the right diagnosis. Also, the diagnosis was not "independent" of the tests being studied, since the clinicians used the results of the tests to help make the diagnosis. Clinicians only diagnosed about one-third of adults in this study with ASD, whereas previous studies in community clinics have had a higher percentage of adults diagnosed; this factor may have influenced the measures' accuracy. Lastly, clinicians in this study did not assess clients for any other mental health conditions, which may have provided more information about the clients who were not diagnosed with ASD.How will these findings help autistic adults now or in the future?: The findings from this study suggest that none of these measures are very accurate on their own. Thus, we recommend multiple measures (interviews and questionnaires) should be used together when clinicians diagnose ASD in adulthood. Results of this study also suggest that measures for adults with ASD should be tested in real-world community clinics, so that clinicians and researchers see how the measures perform when used for initial diagnosis in adulthood.

Improving emotion regulation ability in autism: The Emotional Awareness and Skills Enhancement (EASE) program.

Emotion regulation impairments are common among individuals with autism spectrum disorder and are believed to often underlie commonly seen problems with aggression, depression, and anxiety. The Emotional Awareness and Skills Enhancement program was developed to reduce emotion regulation impairment and thereby improve behavioral disturbance, via mindfulness. Emotional Awareness and Skills Enhancement consists of a 16-week individual therapy treatment targeting emotion regulation impairments among individuals with autism spectrum disorder. We describe the conceptual framework and development of the program and present data on feasibility and preliminary efficacy from a pilot trial. The Emotional Awareness and Skills Enhancement manual was developed using a participatory action framework, based on emotion regulation research specific to autism spectrum disorder and input from individuals with autism spectrum disorder, therapists, and parents of children with autism spectrum disorder. Emotional Awareness and Skills Enhancement was piloted in a two-site open trial with 20 participants with autism spectrum disorder (12-17 years old, confirmed autism spectrum disorder diagnosis, IQ > 80).Outcome data support program feasibility and acceptability to participants, as well as significant improvement in emotion regulation impairments and related concerns.Findings offer preliminary support for both the feasibility and clinical effectiveness of the Emotional Awareness and Skills Enhancement program.

Psychosocial Treatments Targeting Anxiety and Depression in Adolescents and Adults on the Autism Spectrum: Review of the Latest Research and Recommended Future Directions.

PURPOSE OF REVIEW: This synthesis of treatment research related to anxiety and depression in adolescents and adults with autism spectrum disorder (ASD) focuses on the scientific support for various forms of psychosocial interventions, useful adaptations to standard interventions, and engagement of candidate therapeutic mechanisms. RECENT FINDINGS: There is considerable evidence for the efficacy of cognitive-behavioral therapy (CBT) to treat co-occurring problems with anxiety, but there has been relatively little research on treatment of co-occurring depression. Multiple mechanisms of treatment effect have been proposed, but there has been little demonstration of target engagement via experimental therapeutics. Comorbidity between ASD and anxiety and/or mood problems is common. Although there is evidence for the use of CBT for anxiety, little work has addressed how to effectively treat depression. There is emerging support for alternative treatment approaches, such as mindfulness-based interventions. We encourage rigorous, collaborative approaches to identify and manipulate putative mechanisms of change.