Corrigendum: Understanding profound autism: implications for stigma and supports.

[This corrects the article DOI: 10.3389/fpsyt.2024.1287096.].

Development of Restricted and Repetitive Behaviors from 2-19: Stability and Change in Repetitive Sensorimotor, Insistence on Sameness, and Verbal Behaviors in a Longitudinal Study of Autism.

This study examined trajectories of repetitive sensorimotor (RSM), insistence on sameness (IS), and verbal RRBs from ages 2-19 in a well-characterized longitudinal cohort. We also tested the factor structure of the ADI-R restricted and repetitive behavior (RRB) domain at age 19 and the inclusion of a verbal RRBs factor, in addition to previously identified RSM and IS factors, at ages 9 and 19. The ADI-R was administered to 193 participants at five timepoints from 2 to 19. Confirmatory factor analysis (CFA) was used to examine the factor structure of ADI-R RRB data. Change in RRB subtypes was examined using group-based trajectory modeling and multilevel modeling. RSM and IS behaviors generally decreased from 2 to 19, with some participants experiencing increases from ages 2-9. 46.46% of participants experienced increasing verbal RRBs from 2 to 9, followed by a plateau from 9 to 19. The remaining participants had few to no verbal RRBs throughout development. Multilevel modeling indicated ADOS CSS scores were associated with change in RSM trajectories only. Child IQ was not associated with change in any RRB trajectories. CFA indicated previously-derived RSM and IS factors fit age 19 ADI-R data well. The inclusion of a third factor, verbal RRBs, worsened goodness-of-fit statistics and was ultimately omitted. Our findings suggest the RRB factor structure of the ADI remains consistent into early adulthood and illustrate developmental continuity and change in RRBs. For autistic individuals with fluent speech, RRB presentation may be influenced by verbal ability in ways that are highly variable, but clinically meaningful.

Understanding profound autism: implications for stigma and supports.

Introduction: Societal perceptions and lack of understanding of autism spectrum disorder can be stigmatizing for autistic individuals and their families. This may be particularly the case for individuals who meet criteria for profound autism. Despite the considerable service needs of this marginalized group, there is little data on the prevalence of profound autism, nor on the experiences of those with profound autism and their families. Methods: The current study leveraged a mixed-methods approach to address these gaps. First, the prevalence of profound autism was examined in six samples-three from the United States and three from Western Europe. Second, inductive thematic analysis was used to code interviews from 20 caregivers of profoundly autistic adults. Results: The prevalence of profound autism varied widely across the six samples-from 11% to 48%. There were also notable differences between samples in prevalence by gender, race, and ethnicity. Two overarching themes were identified via inductive thematic analysis: Community Perceptions of Autism and Family Support Needs and Advocacy Challenges. Though caregivers were not directly asked about stigmatization during interviews, 85% of caregivers reported at least one instance of perceived stigma. Discussion: Future research should continue to examine the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course.

Social competence as a predictor of adult outcomes in autism spectrum disorder.

There is a wealth of literature characterizing social difficulties in autism spectrum disorder (ASD). However, little work has replicated longitudinal findings from typical development that adolescent social competence predicts positive adult outcomes in ASD. The current study examined social competence trajectories from 2 to 26 and the utility of three social competence measures collected in adolescence in predicting work, residential status, friendship, and romantic outcomes in a longitudinal cohort (n = 253) of ASD. Using group-based trajectory modeling, we identified two patterns of social competence development: a low trajectory characterized by slow linear gains throughout childhood and plateauing in adulthood, and a high trajectory characterized by steeper linear gains in childhood followed by decline in adulthood. Regression models indicated one social competence measure, Vineland Social-AE scores, significantly predicted employment, residential status, and friendships in adulthood. One other social competence measure, SSQ total scores, also significantly predicted friendship in adulthood. Only nonverbal IQ at 9 predicted the likelihood of having ever had a romantic relationship. These findings highlight the role of social competence in both atypical and typical development and suggest the social impairments associated with ASD do not necessarily impact all realms of social functioning equally.

Work and well-being: Vocational activity trajectories in young adults with autism spectrum disorder.

Young adults with autism spectrum disorder (ASD) experience limited social connectedness, difficulty living independently, and other poor outcomes at high rates. Vocational activities, including employment and postsecondary education, are associated with increased positive outcomes and subjective well-being in typical adults. This study identified vocational activity trajectory groups in adults with ASD, examined change in these trajectories from ages 18 to 28, and compared levels of parent- and self-report subjective well-being across trajectory groups. One hundred fifty-one adults with ASD were drawn from an ongoing longitudinal study. Data on psychosocial outcomes and vocational activities were compiled from parent-report demographic forms. Vocational activities were scored using the vocational index (VDI). There was no significant effect of age on the slope of vocational trajectories (p = 0.787). Participants in the Independent Activities group had significantly higher parent-report happiness factor scores than participants in the No Activities group (F [3, 107] = 3.56, p = 0.017) and significantly higher self-report happiness factor scores than participants in the Volunteer Activities group (F [2, 35] = 6.46, p = 0.004). The Independent Activities group was also significantly more likely to have at least one social contact (X2 [3, 118] = 10.54, p = 0.014), however, there was no difference in trajectories groups in the likelihood of living independently (X2 [3, 120] = 1.71, p = 0.634). The results of this study indicate vocational activities in young adults with ASD are stable across time. In the current sample, participation in independent vocational activities was associated with increased levels of subjective well-being.

Post-High School Daily Living Skills in Autism Spectrum Disorder.

OBJECTIVE: Daily living skills (DLS) are a predictor of positive outcomes in youths with autism spectrum disorder (ASD), yet little is known about trajectories of DLS in adults with ASD. This study investigated the impact of high school exit on participants' trajectories of daily living skills age equivalent (DLS-AE) scores from ages 2 to 26 and the relationship between DLS-AE trajectories and employment and education outcomes. METHOD: Participants were 98 adults with ASD drawn from an ongoing longitudinal study. The Vineland Adaptive Behavior Scales were administered 8 times from ages 2 to 26. Employment and education data were compiled from parent report demographic forms. RESULTS: DLS-AE trajectories modestly increased with age before exiting school, at which point DLS-AE trajectories plateaued, then declined. A significant (p < .01) decrease occurred in the slope of DLS-AE trajectories following school exit. High DLS-AE scores predicted participation in postsecondary education (χ25 [n = 73] = 27.83, p < .001). Autism symptom severity predicted participation in employment (χ25 [n = 58] = 27.54, p < .001). CONCLUSION: These findings provide evidence that DLS decline in adults with ASD, specifically after school exit, and highlight the importance of DLS in normative adult outcomes. Future work should examine the trajectories of DLS in middle and later adulthood and consider intervention targets for bolstering DLS following school exit.

Autism Heterogeneity in a Densely Sampled U.S. Population: Results From the First 1,000 Participants in the RI-CART Study.

The objective of this study was to establish a large, densely sampled, U.S. population-based cohort of people with autism spectrum disorder (ASD). The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by ASD. Diagnosis was based on direct behavioral observation via the Autism Diagnostic Observation Schedule, Second Edition. For the first 1,000 participants, ages ranged from 21 months to 64 years. Using Geographic Information System and published prevalence rates, the overall cohort is estimated to represent between 20% and 49% of pediatric age persons in Rhode Island with ASD, with demographics representative of U.S. Census. We observed a high rate of co-occurring medical and psychiatric conditions in affected individuals. Among the most prominent findings of immediate clinical importance, we found that females received a first diagnosis of ASD at a later age than males, potentially due to more advanced language abilities in females with ASD. In summary, this is the first analysis of a large, population-based U.S. cohort with ASD. Given the depth of sampling, the RI-CART study reflects an important new resource for studying ASD in a representative U.S. population. Psychiatric and medical comorbidities in ASD constitute a substantial burden and warrant adequate attention as part of overall treatment. Our study also suggests that new strategies for earlier diagnosis of ASD in females may be warranted. Autism Res 2020, 13: 474-488. © 2020 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: The Rhode Island Consortium for Autism Research and Treatment (RI-CART) represents a unique public-private-academic collaboration involving all major points of service for families in Rhode Island affected by autism spectrum disorder (ASD). In this article, we provide results from the first 1,000 participants, estimated to represent >20% of affected families in the state. Importantly, we find a later age at first diagnosis of ASD in females, which potentially calls attention to the need for improved early diagnosis in girls. Also, we report a high rate of co-occurring medical and psychiatric conditions in affected individuals.