Demographic Factors Relate to Autism Diagnostic Certainty: Implications for Enhancing Equitable Diagnosis Among Youth.

OBJECTIVE: Autism diagnosis is fraught with inequities, including misdiagnosis and delayed identification that disproportionately affect minoritized youth. Aspects of clinician decision-making, particularly diagnostic certainty, may contribute to these inequities. Little is known about how closely clinician certainty corresponds with autistic traits, nor whether certainty relates to socio-demographic factors. METHOD: Autistic youth from the Simons Simplex Collection (N = 2,853) completed assessments after which clinicians rated how certain they were that the child met autism diagnostic criteria. Core clinical factors included clinician-observed (Autism Diagnostic Observation Schedule; ADOS) and parent-reported autistic traits (Social Communication Questionnaire), and an overall IQ score. RESULTS: Clinician certainty was moderately positively associated with parent-reported and observed autistic traits and was just as strongly negatively associated with IQ. Socio-demographic factors significantly associated with certainty, even accounting for clinical measures. Lower income and older child age related to less certainty. In contrast, clinicians rated higher certainty for youth identified as Hispanic, Black or African American, or Asian. Race and income also moderated the concordance between certainty with clinical factors. The agreement between higher ADOS scores and higher certainty was significantly weaker for lower-income families. The association between lower IQ and higher certainty was non-significant for Asian youth. CONCLUSIONS: Diagnostic certainty ratings do not necessarily correspond closely with the level of autistic traits, and clinician perception of autism diagnosis may be related to demographic factors. Caution is needed when relying on clinician certainty to inform diagnosis. Future research on diagnostic practices is urgently needed among diverse and minoritized communities.

Predictors of longer-term development of expressive language in two independent longitudinal cohorts of language-delayed preschoolers with Autism Spectrum Disorder.

BACKGROUND: Studies estimate that 30% of individuals with autism are minimally verbal. Understanding what factors predict longer-term expressive development in children with language delays is critical to inform identification and treatment of those at-risk for persistent language impairments. The present study examined predictors of expressive language development in language-delayed preschoolers followed through later school-age and young adulthood. METHODS: Children using single words or less on the Autism Diagnostic Observation Schedule (ADOS) at approximately 3 years old were drawn from the Early Diagnosis (EDX) and Pathways in ASD longitudinal cohorts. Age-3 predictors of Age-19 ADOS language level were identified using Classification and Regression Trees (CART) in the EDX sample. Linear mixed models examined the effects of CART-identified predictors on Vineland expressive communication (VExp) trajectories from Age-3 to Age-19. The same linear mixed models were examined in the Pathways sample, identifying predictors of VExp from ages 3 to 10.5 years. RESULTS: Significantly delayed fine motor skills (T-score < 20) was the strongest CART predictor of Age-19 language. In the linear mixed models, time, Age-3 fine motor skills and initiation of joint attention (IJA) predicted VExp trajectories in the EDX sample, even when controlling for Age-3 visual receptive abilities. In the Pathways sample, time and Age-3 fine motor skills were significant predictors of VExp trajectories; IJA and cognitive skills were not significant predictors. CONCLUSIONS: Marked deficits in fine motor skills may be a salient proxy marker for identifying language-delayed children with ASD who are at risk for persistent language impairments. This finding adds to the literature demonstrating a relation between motor and language development in ASD. Investigating individual skill areas (e.g., fine motor and nonverbal problem-solving skills), rather than broader indices of developmental level (e.g., nonverbal IQ) may provide important cues to understanding longer-term language outcomes that can be targeted in early intervention.

A Qualitative Examination of the Impact of COVID-19 on Transition Services for Autistic Youth.

The coronavirus (COVID-19) pandemic has caused widespread disturbances in many human and social service programs. Several studies have examined special education programming adaptations since the onset of the pandemic; however, there has yet to be documentation of pandemic-related changes to transition programming and the impact of these changes for autistic youth. The purpose of this qualitative study was to examine changes in transition programming for autistic youth amid the changing educational landscape. We conducted 12 interviews with caregivers (n = 5) and school providers (n = 7) about transition programming for autistic youth and the COVID-19 impact to these services. The pandemic had positive and negative effects on many aspects of transition programming, including student-focused planning, student development, interagency and interdisciplinary collaboration, family involvement, and program structure and attributes. Elucidation of the ways that the COVID-19 pandemic impacted transition programming from the perspectives of multiple stakeholders has important implications for school personnel and can help to inform the future directions for the field of transition programming research.

The Impact of Birth Order on Language Development in Autistic Children from Simplex Families.

The current study investigated the impact of birth order on vocabulary and social language development in 1338 first-born and 1049 s-born autistic youth (M age = 9.03 years, SD = 3.57; 86.4% male) from the Simons Simplex Collection. Frequentist and Bayesian analyses revealed mixed findings in language development. There were no differences in vocabulary or social language between first-born and second-born children. However, birth order and income together predicted expressive vocabulary and inappropriate speech such that birth order had a greater impact on language in lower-income families. This is the first study to investigate the impact of birth order on language outcomes in autistic youth and has implications for early intervention in lower-resourced communities.

Cognitive profiles of children with autism spectrum disorder with parent-reported extraordinary talents and personal strengths.

LAY ABSTRACT: Previous research has suggested that focusing on impairments can be detrimental to the well-being of autistic individuals, yet little research has focused on strengths and positive qualities in autism. Some studies explored "savant skills" (herein referred to as "extraordinary talents"), that is, skills that stand out compared to the general population. These often group everyone who has a specific talent, rather than exploring subgroups with strengths in specific areas. There has been even less research focused on personal strengths (i.e. skills that stand out relative to the individual's other abilities, but not the general population). To expand this research, we use a sample of 1470 children (ages 4-18 years) from the Simons Simplex Collection without cognitive impairment to examine the relationship between having a parent-reported skill in a specific area and performance on a standardized cognitive test. Almost half (46%) had at least one parent-reported talent and an additional 23% without extraordinary talents had at least one personal strength. Children with these parent-reported skills had different patterns of performance on these standardized tests than children without skills in that area (i.e. visuospatial, drawing, computation, reading, and memory). Specific skills in computation or reading were associated with higher overall performance on the standardized tests. These results emphasize the importance of considering strengths separately by area, rather than combining individuals with different types of strengths. The high number of children with skills in this study underscores the need for more research in this area, particularly using instruments focused on understanding the nuances of these strengths. It is important for future studies to consider these skills in children with cognitive impairment.

Perceived Driving Difficulty, Negative Affect, and Emotion Dysregulation in Self-Identified Autistic Emerging Drivers.

Driving is central to adult independence and autonomy; yet most autistic young adults do not acquire driver's licenses. It is important to understand barriers to achieving this milestone for autistic adults. Differences in negative affect and emotion dysregulation associated with autism may interfere with managing difficult driving situations. The current study compared perceived driving difficulty (DD), emotion dysregulation, and negative affect in emerging drivers with and without autistic traits (AT), and investigated how emotion dysregulation and negative affect relate to perceived DD. We expected (1) greater perceived DD, emotion dysregulation, and negative affect in participants with AT and (2) a positive correlation of perceived DD with both emotion dysregulation and negative affect in the whole sample. Thirty-seven adolescents and young adults (15 AT) self-reported perceived DD in 15 scenarios and completed the Difficulty in Emotion Dysregulation Scale (DERS) and the Depression, Anxiety, and Stress Scale (DASS). Autistic participants scored significantly higher on mean perceived DD, DERS Impulse subscale, DASS total and DASS Stress subscale scores. Perceived DD positively correlated with the DERS and DASS total scores, all DASS subscales, and DERS Nonacceptance, Goals, and Impulse subscales across the whole sample. The findings highlight the roles of emotion dysregulation and negative affect in perceived DD in emerging drivers with AT. In particular, emotional stress and impulsivity may map onto mechanisms of over-reactivity to negative affect and explain why autistic people perceive particular situations as difficult when driving. Implications and directions for future research are discussed.

Frequency and correlates of augmentative and alternative communication use in an autistic inpatient sample.

Although augmentative and alternative communication (AAC) strategies are often used by autistic youth, little is known about the use of AAC in inpatient psychiatric settings. This study evaluated how demographic and clinical factors (e.g., language level, IQ) related to AAC use in a well-characterized sample of 527 autistic youth (78.7% male, mean age 12.94) who participated in the Autism Inpatient Collection. AAC use was common, with 42.5% of caregivers reporting at least one form of AAC. White children were more likely to use AAC than non-white children at the bivariate level. In regression analyses, young children were more likely to use AAC than older children. These results suggest the importance of provider training and improved equitable access to AAC.

Differences in profiles of emotional behavioral problems across instruments in verbal versus minimally verbal children with autism spectrum disorder.

There has been increasing attention to the assessment of minimally verbal (MV) children with autism spectrum disorder (ASD). Previous research has begun to examine the relationship between verbal abilities and emotional and behavioral problems (EBP). The current study compared parent-reported EBP in children of differing language levels on two instruments commonly used in ASD research and clinical practice, the Child Behavior Checklist (CBCL) and Aberrant Behavior Checklist (ABC). The study consisted of 1,937 6-18 years old children with ASD from the Simons Simplex Collection. Children were divided into three language groups, by ADOS module (Module 1 = MV, 2 = phrase speech (PS), and 3 = verbally fluent (VF)) and then compared on CBCL and ABC subscales. The ABC and CBCL showed different patterns of elevations across the language groups. MV children were reported to have more impairment than VF children on the ABC irritability, lethargy, and hyperactivity scales. Children with less language (MV and PS) exhibited less impairment on the CBCL internalizing domain than VF children, but did not differ on the externalizing domain. Post hoc comparisons showed that internalizing differences were driven by fewer children with less language exhibiting clinically elevated anxious/depressed scores compared to VF children. The present study underscores the significance of considering language when assessing EBP. Results have implications for the psychiatric screening of children with ASD, particularly those with language impairments. Researchers should exercise caution when applying EBP instruments designed for use with different populations and purposes to broad samples of children. Autism Res 2019, 12: 1367-1375. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Some emotional and behavioral problem (EBP) scales include items that may be inappropriate for children with ASD and limited language. The present study found that there was a tendency for children with language impairment to have lower internalizing scores on the Child Behavior Checklist, but higher scores lethargy and irritability scores on the Aberrant Behavior Checklist, relative to verbally fluent children. This suggests that each of these instruments may underestimate EBPs in certain subsets of children.

Autism spectrum disorder symptoms from ages 2 to 19 years: Implications for diagnosing adolescents and young adults.

This study explored change in social-communicative symptoms in 140 individuals with childhood autism spectrum disorder (ASD) diagnoses. Trajectories of caregiver-reported social-communicative symptoms were examined for three groups (verbal, delayed speech, minimally verbal) from ages 2 to 19 years. Groups showed comparable levels of social-communicative impairment at 2 years and significant decreases in overall symptom levels across the 17-year period (P < .001). Across three subdomains, main effects of time and language (P < .001) reflected patterns of overall improvement, although children with more impaired language tended to have more caregiver-reported symptoms relative to verbal peers. A significant time-by-language interaction (P < .001) reflected that trajectories of socioemotional reciprocity symptoms differed according to patterns of language development. In contrast, improvements in the nonverbal communication domain were seen across language groups, whereas deficits in the development and maintenance of relationships improved for only verbal children. Verbal adults showed significant reductions in the prevalence of kseveral symptoms exhibited during childhood. Improvements suggest that symptoms indicative of ASD in young children may no longer be diagnostic markers in adolescents and adults. Relative stability of several items suggests that impaired facial expression may be a core ASD symptom that warrants more systematic study across the lifespan. Research investigating the manifestation of ASD in older individuals is needed to foster development of appropriate assessment tools and interventions. Differential relationships to developmental factors within the broader social-communication domain underscores a need to focus on more narrowly defined symptom constructs when exploring links between pathophysiology and observable phenotypes. Autism Research 2019, 12: 89-99. © 2018 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: In a sample of 140 participants with autism spectrum disorder (ASD) followed from 2 to 19 years old, this study found that overall social-communicative symptoms improve across childhood and adolescence. However, timing and amount of change varied for different symptom categories and participants with different language abilities. Findings suggest that some older adolescents and adults with ASD may not exhibit the same difficulties observed in young children with ASD. More research is needed to better understand the strengths and needs of young adults with ASD.