Disentangling global and domain-level adaptive behavior trajectories among children with autism spectrum disorder.

BACKGROUND: Heterogeneity in adaptive behavior abilities among people with autism spectrum disorder (ASD) is expressed not only as uneven levels of impairment across domains, but also in the developmental trajectories of adaptive skills. We studied the question of whether, after accounting for global adaptive behavior development, we find evidence of heterogeneity in the trajectories of specific domains of adaptive behavior. METHODS: A sample of 504 children with ASD was obtained by combining data from two independent natural history studies conducted in North America. We used a factor of curves model to explain growth between 36 and 138 months in Vineland Adaptive Behavior Scales, Second Edition (VABS) age equivalents as a function of domain-specific and global growth processes. RESULTS: The domain-specific trajectories in all three domains (Communication, Daily Living Skills, and Socialization) reflected impairment relative to age expectations as well as slower-than-expected growth with age, and the parameters of these trajectories were moderately-to-strongly correlated across domains. The global adaptive behavior trajectory had an initial (36-41 months of age) developmental level of about 22 age-equivalent months, and eventually slowed after initially increasing by about 6 months each year. The global trajectory accounted for the majority of variance in the domain-level processes; however, additional variance remained (14%-38%) in the domain-level intercepts, slopes, and quadratic processes. CONCLUSIONS: These results extend existing theoretical and empirical support for the hierarchical structure of adaptive behavior to include its development over time in clinical samples of children with ASD. A latent global trajectory may be sufficient to describe the growth of adaptive behavior in children with ASD; however, the remaining domain-specific variability after accounting for global adaptive behavior development allows for the possibility that differential effects of intervention on specific domains may be possible and detectable.

Longitudinal associations between early childhood irritability and adolescent depression symptoms in autistic children are mediated by peer relationships but not educational engagement.

In the general population, irritability is associated with later depression. Despite irritability being more prevalent in autistic children, the long-term sequelae are not well explored. We tested whether irritability in early childhood predicted depression symptoms in autistic adolescents, and whether associations could be explained by difficulties in peer relationships and lower educational engagement. Analyses tested the longitudinal associations between early childhood irritability (ages 3-5) and adolescent depression symptoms (age 14) in a prospective inception cohort of autistic children (N = 390), followed from early in development shortly after they received a clinical diagnosis. Mediators were measured in mid-childhood (age 10) by a combination of measures, from which latent factors for peer relationships and educational engagement were estimated. Results showed early childhood irritability was positively associated with adolescent depression symptoms, and this association remained when adjusting for baseline depression. A significant indirect pathway through peer relationships was found, which accounted for around 13% of the association between early childhood irritability and adolescent depression, suggesting peer problems may partially mediate the association between irritability and later depression. No mediation effects were found for education engagement. Results highlight the importance of early screening and intervention for co-occurring irritability and peer problems in young autistic children.

Developmental cascades between insistence on sameness behaviour and anxiety symptoms in autism spectrum disorder.

Autistic children experience high rates of anxiety. Insistence on sameness behaviour (IS) is a core feature of autism that appears correlated with anxiety severity. The objective of this study was to examine the longitudinal relations between anxiety and IS in autistic children using a developmental cascade model. A longitudinal cohort of 421 autistic children was followed between 4 and 11 years of age. Anxiety was quantified using items from the Anxiety Problems subscale of the Child Behavior Checklist; sameness behaviours were measured using the Repetitive Behavior Scale-Revised, Ritualistic/sameness subscale (both parent-report measures). Structural equation modelling was used to examine the longitudinal and directional associations between anxiety and IS at four time-points, through cross-lagged panel models (CLPM) with and without a random-intercepts component (RI-CLPM). Both the CLPM and the RI-CLPM had good fit. Significant directional associations were detected whereby elevated or increasing IS preceded elevated or increasing anxiety symptoms 1-2 years later, respectively. Stable baseline tendencies towards anxiety and IS as between-person traits (intercepts) were strongly associated (standardized estimate = 0.69, p < 0.001). The magnitude of the cross-sectional associations between anxiety and IS appeared to lessen with age. IS and anxiety symptoms in autism are closely related. They appear to be shared traits that mirror each other particularly in younger children. Increasing IS may be a sign of emerging future anxiety. Interventions that target IS to reduce or prevent anxiety amongst school-aged autistic children merit further study.

Predictors of language regression and its association with subsequent communication development in children with autism.

BACKGROUND: Language regression, broadly defined as the loss of acquired language skills in early childhood, is a distinctive feature of autism. Little is known about the factors underlying regression or the prognosis of children who exhibit regression. We examine potential predictors of language regression and test its association with language development in a prospective longitudinal sample of children with autism spectrum disorder (ASD) from diagnosis to age 10 years. METHODS: We analysed data from Pathways in ASD, a prospective longitudinal study of 421 children enrolled around the time of an autism diagnosis between 2 and 5 years. Autism Diagnostic Interview-Revised data were available for 408 children, of whom 90 (22%) were classified as having language regression. RESULTS: Demographic and other health factors including caregiver education, family income, child sex, reported seizures, and age of enrolment did not differ between children with and without language regression. Children with language regression walked earlier and attained first words sooner than those without regression. However, both groups attained phrase speech at comparable ages. Those with regression exhibited greater delays in expressive and receptive communication over the follow-up period, although this effect was attenuated when accounting for baseline differences in motor and cognitive ability. Overall, those with language regression continued to exhibit expressive but not receptive communication delay compared to those without regression. Communication trajectories were heterogeneous to age 10 years, irrespective of regression status. CONCLUSIONS: Although language regression can be alarming, our findings confirm that its occurrence does not necessarily foreshadow worse developmental outcomes relative to those without regression. Although a discrepancy in age-equivalent communication skills may persist, this can be expected to be of less practical importance with rising average levels of skills. Future studies need to account for the significant variability in language trajectories by considering factors beyond developmental regression.

Middle-childhood executive functioning mediates associations between early-childhood autism symptoms and adolescent mental health, academic and functional outcomes in autistic children.

BACKGROUND: Executive functioning (EF) varies in children with autism spectrum disorder (ASD) and is associated with clinical symptoms, academic, and adaptive functioning. Here, we examined whether middle-childhood EF mediates associations between early-childhood autism symptoms and adolescent outcomes in children with ASD. METHODS: The Pathways in ASD Cohort comprising children recruited at the time of ASD diagnosis (at 2-4 years-of-age) and followed prospectively across eight subsequent timepoints over ~10 years was used. A subset of Pathways participants (n = 250) with Behavior Rating Inventory of Executive Function (BRIEF)-Parent Form data from at least one timepoint when participants were school-aged was analyzed. A mediation framework was used to examine whether BRIEF-measured EF across age 7-10 years (middle-childhood) mediated associations between early-childhood autism symptoms (measured using the parent-report Social Responsiveness Scale across age 2-6 years) and clinical, academic, and functional outcomes, indexed at age >10-11.8 years (early-adolescence) using the Child Behavior Checklist (CBCL)-Internalizing and Externalizing Scales, Academic Performance from the Teacher's Report Form, and Vineland Adaptive Behavior Scales. Models were rerun substituting clinician-rated and teacher-rated measures, where possible. RESULTS: Mediation models indicated a significant indirect effect of middle-childhood EF on associations between early-childhood autism symptoms and externalizing behavior, academic performance, or adaptive functioning in early adolescence; kappa squared (κ2 ) effect sizes ranged from large to small. Model findings were stable across raters. Middle-childhood EF did not mediate associations between early-childhood autism symptoms and adolescent internalizing behavior. CONCLUSIONS: Among children with an ASD diagnosis, middle-childhood EF may be one pathway through which early-childhood autism symptoms influence a variety of outcomes in early-adolescence. An experimental study targeting middle-childhood EF to improve adolescent academic, emotional/behavioral, and adaptive functioning is needed to evaluate the clinical meaningfulness of these findings.

Co-occurring trajectories of anxiety and insistence on sameness behaviour in autism spectrum disorder.

BACKGROUND: Children with autism spectrum disorder (ASD) have increased susceptibility to anxiety disorders. Variation in a common ASD symptom, insistence on sameness behaviour, may predict future anxiety symptoms. AIMS: To describe the joint heterogeneous longitudinal trajectories of insistence on sameness and anxiety in children with ASD and to characterise subgroups at higher risk for anxiety. METHOD: In a longitudinal ASD cohort (n = 421), insistence on sameness behaviour was measured using the Autism Diagnostic Interview-Revised at approximately ages 3, 6 and 11 years. Anxiety was quantified at 8 time points between ages 3 and 11 years using the Child Behavior Checklist (CBCL) (parent report). Clusters of participants following similar trajectories were identified using group-based and joint trajectory modelling. RESULTS: Three insistence on sameness trajectories were identified: (a) 'low-stable' (41.7% of participants), (b) 'moderate-increasing' (52.0%) and (c) 'high-peaking' (i.e. increasing then stabilising/decreasing behaviour) (6.3%). Four anxiety trajectories were identified: (a) 'low-increasing' (51.0%), (b) 'moderate-decreasing' (16.2%), (c) 'moderate-increasing' (19.6%) and (d) 'high-stable' (13.1%). Of those assigned to the 'high-peaking' insistence on sameness trajectory, 95% jointly followed an anxiety trajectory that surpassed the threshold for clinical concern (T-score >65) by middle childhood (anxiety trajectories 3 or 4). Insistence on sameness and anxiety trajectories were similar in severity and direction for 64% of the sample; for 36%, incongruous patterns were seen (e.g. decreasing anxiety and increasing insistence on sameness). CONCLUSIONS: The concurrent assessment of insistence on sameness behaviour and anxiety in ASD may help in understanding current symptom profiles and anticipating future trajectories. High preschool insistence on sameness in particular may be associated with elevated current or future anxiety symptoms.

Profiles and Predictors of Academic and Social School Functioning among Children with Autism Spectrum Disorder.

Objective: The purpose of the study was to identify profiles and predictors of academic and social functioning in a sample of school-age children with autism spectrum disorder.Method: The study included 178 children (88% boys, 75% Caucasian, ages 10-11) who completed a standardized measure of academic skills and whose teachers completed a related measure. Measures of both academic and social performance were used to construct profiles of school functioning. Measures of language, nonverbal IQ, autism symptom severity, behavior difficulties, and early social-communication skills between ages 3 and 4 were used to examine predictors of profile membership. Latent Profile Analysis was used to identify and describe profiles of children's academic and social school functioning. Profile membership was then regressed on each of the predictors using a series of multinomial logistic regression models. Finally, a multivariate model that included all significant predictors was built to examine the best fitting constellation of profile predictors.Results: Four profiles - reflecting variation in academic achievement, school engagement, socialization skills, pragmatic language use, and social relationships - captured the diverse school functioning outcomes of the sample. Profile membership was predicted by variation in imitation, responding to joint attention, language ability, nonverbal IQ and behavior difficulties between ages 3 and 4 years. However, in a multivariate model, only language and behavior difficulties emerged as significant predictors.Conclusions: A person-centered approach to targeted early intervention that reduces behavior difficulties and enhances social-communication and language abilities may prove especially important for the promotion of later academic and social functioning at school.

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.

Relationships Among Deaf/Hard-of-Hearing Siblings: Developing a Sense of Self.

While sibling relationships are known to be important for children's social and emotional well-being, little is known about sibling relationships when both siblings are deaf or hard-of-hearing (DHH). In-depth interviews were conducted with 10 young DHH adults (20-30 years old) who had studied in mainstream schools to explore their retrospective experiences of growing up with a DHH sibling. Interviews were analyzed using interpretive phenomenological analysis. Findings revealed two superordinate themes: (1) sibling relationship and sense of self and (2) family coping and relationships, with each superordinate theme containing several subthemes. Findings highlighted the various ways sibling relationships contribute to siblings' psychological development, identity formation, and coping with deafness. Potential challenges were identifed, as well as the role of parents' attitudes and coping with hearing loss in promoting supportive sibling relationships. Parents and professionals should be aware of the valuable and unique aspects of DHH siblingship and attend to imporatnt relationship asepcts such as sibling communication, sibling comparisons, and parental differential treatment.

The Transition to School Among Deaf/Hard-of-Hearing Children: Teacher and Parent Perspectives.

Although entry into the school system is a major milestone in the lives of young d/Deaf or hard-of-hearing (DHH) children and their families, relatively little is known about parents' and teachers' experiences and perspectives of this important transition. The aims of this study were to describe parents' concerns during their children's transition from early intervention to school, to describe practices available for families of DHH children, and to explore parents' and teachers' perspectives regarding practices that support a smooth transition to school. Parents (N = 40) and teachers (N = 37) of the deaf and hard of hearing completed surveys examining their experiences and perspectives on DHH children's transition to school. Among concerns expressed among parents was their child's ability to participate successfully in an inclusive school setting, as well as the level of supports their child would receive. Teachers reported numerous policies and practices that supported the transition to school, emphasizing high-intensity practices often used to gather information about the child and set accommodations in place. Parent and teacher reports on facilitators for the transition are compared and contrasted. Recommendations for research and practice are provided.

The transition to adulthood of young adults with IDD: Parents' joint projects.

INTRODUCTION: Parents have found the transition to adulthood for their sons or daughters with intellectual and/or developmental disabilities (IDD) particularly challenging. The literature has not examined how parents work together and with others in face of this transition nor has it highlighted parental goals in this process. This study used a perspective based on joint, goal-direct action to describe the projects that Canadian parents engaged in together and with others relative to this transition. METHODS: Using the qualitative action-project method, joint projects between parents and with others were identified from their conversations and followed for 6 months. FINDINGS: Three groups of projects were described: equipping the young adult for adult life, connecting for personal support and managing day-to-day while planning for the future. CONCLUSIONS: Parents act together and with others relative to the transition to adulthood of their young adult children with IDD. These projects are complex and differ in goals, steps, resources and emotional regulation and motivation.

Parent Couples' Coping Resources and Involvement in their Children's Intervention Program.

Parental involvement is vital to the implementation of intervention programs for deaf and hard-of-hearing (DHH) children. The current study examined the dyadic relationships between mothers' and fathers' coping resources and their involvement in their child's intervention program. In addition, the moderating roles of parent's gender and family religiosity on the associations between coping resources and involvement were examined. Seventy Jewish couples of parents of DHH children, representing various levels of religiosity, completed questionnaires regarding involvement in their child's intervention program, child acceptance, parental self-efficacy, and perceived social support. Multilevel modeling analyses were used to test actor-partner interdependence. The findings indicated significant actor effects for child acceptance, parental self-efficacy, and social support. All were positively associated with parental involvement. Gender was found to moderate the actor effect of child acceptance. Partner effects were found only for mothers, for child acceptance, and social support. Fathers' child acceptance and social support were negatively associated with mothers' involvement. Religiosity did not moderate neither actor nor partner effects. These results have important implications for planning intervention programs that are sensitive to each of the parent's needs.

Health-Related Quality of Life Among Young Children With Cochlear Implants and Developmental Disabilities.

OBJECTIVE: The present study examined differences in health-related quality of life (HRQoL) between deaf children with cochlear implants (CI) with and without developmental disabilities (DD) and differences across HRQoL domains within both groups of children. METHODS: Ninety-two parents of children with CI aged 3-7 years participated in this cross-sectional study. Of these children, 43 had DD (i.e., CI-DD group) and 49 had no DD or chronic illness, demonstrating overall typical development (i.e., CI-TD group). Parents of children in both groups completed the KINDL, a generic HRQoL questionnaire. Parents also provided anecdotal comments to open-ended questions, and parent comments were evaluated on a CI benefits scale to assess parent-perceived benefits of CI for the deaf children with and without disabilities. RESULTS: Children in the CI-DD group had significantly lower HRQoL compared to children in the CI-TD group, including lower scores on the self-esteem, friend, school, and family HRQoL subscales. No significant differences among groups were found on the physical well-being and emotional well-being subscales. For the CI-TD group, age at implantation correlated negatively with self-esteem and school HRQoL subscales. In the CI-DD group, children's current age correlated negatively with family and with the total HRQoL scores. Parent anecdotal comments and scores on the CI-benefits scale indicated strong parent perceptions of benefits of implantation for children in both groups. CONCLUSION: Based on parents' proxy report, findings suggest that having DD affects multiple domains of HRQoL among young children with CIs above and beyond that of the CI itself. Parents of deaf children with DD may need greater support through the CI process and follow-up than parents of deaf children without DD.

Everyday Stressors in Deaf and Hard of Hearing Adolescents: The Role of Coping and Pragmatics.

The current mixed-methods study examined everyday problems among deaf and hard of hearing (DHH) adolescents across various life domains. To better understand the factors influencing levels of perceived stress, the impact of DHH adolescents' coping and pragmatic abilities was also examined. Thirty DHH adolescents completed questionnaires about everyday stressors and coping, and 13 of these respondents were interviewed regarding their everyday problems. All participants used spoken language and attended mainstream high schools. Teachers evaluated the pragmatic skills of each participant through a communication assessment tool. The quantitative-based results showed that DHH adolescents perceived greatest stress related to the future, peers, and school, in that order. Considerably less stress was experienced with regard to parents, leisure, and romantic relationships. The qualitative data reflected the context-specific everyday stressors experienced by DHH adolescents and suggested they have been generated by problems related to having a hearing loss, experiences in social interactions, classroom environment, and academic challenges. Importantly, lower pragmatic abilities and increased level of withdrawal coping style were found to be associated with higher perceived stress. The conclusions focused on ways in which schools, teachers, and professionals can implement prevention and intervention efforts to adequately support DHH adolescents in facing everyday challenges.

The Transition From Early Intervention to School for Children Who Are Deaf or Hard of Hearing: Administrator Perspectives.

Although the transition from early intervention (EI) to school is a significant milestone in the lives of young children, little research to date has investigated this transition among children who are deaf or hard of hearing (D/HH). The aims of this study were to investigate the organizational policies, procedures, and guidelines that facilitate or hinder the transition from the EI system to the school system for children who are D/HH from the perspective of program administrators. Using the Enhanced Critical Incident Technique methodology, 146 incidents were extracted from 10 interviews and sorted into 10 helping, 9 hindering, and 5 wish list categories. Findings are consistent with the Ecological and Dynamic Model of Transition (Rimm-Kaufman & Pianta, 2000), which conceptualizes the transition to school as being influenced by the pattern of interactions between the individuals, groups, and institutions connected to the child.

The Impact of Childhood Hearing Loss on the Family: Mothers' and Fathers' Stress and Coping Resources.

Parenting children who are deaf or hard of hearing (D/HH) presents unique long-term challenges that can place the parents at a greater risk for elevated levels of parenting stress. Adaptation of families to the various challenges presented by childhood hearing loss is influenced by their personal and social coping resources available for managing these stressors and challenges. The current study examined differences in parenting stress and personal (i.e., acceptance of the child who is D/HH and parents' sense of parenting self-efficacy) and social (i.e., formal and informal social support) coping resources between mothers and fathers of children who are D/HH in the Arab sector in Israel. Further, the study examined the relations between coping resources and parenting stress among these parents. Participants included 30 Israeli Arab mother-father couples (n = 60) having a child who is D/HH aged 3-8 years. Findings revealed no significant differences between mothers and fathers regarding parenting stress, child acceptance, or parental support systems. However, mothers reported significantly higher self-efficacy. In addition, correlation analysis indicated that higher coping resources decreased parenting stress levels. Theoretical and practical implications of parental gender in the context of cultural background are discussed regarding parent intervention programs.

Children's night waking among toddlers: relationships with mothers' and fathers' parenting approaches and children's behavioural difficulties.

AIMS: To explore associations between children's sleep problems, and behavioural difficulties and parenting approaches. BACKGROUND: Children commonly have problematic night waking; however, relationships between parenting cognitions and behaviours and children's sleep problems are rarely examined. DESIGN: Longitudinal children's cohort study from 5-29 months post birth. METHODS: Data were taken from the Quebec Longitudinal Study of Child Development (1998-2007) at three phases: 5, 17 and 29 months of age. Thousand four hundred and eighty-seven families were included in our study based on: participation from phase 1 (5-months old), both parents' reports on parenting cognitions/behaviours and child behavioural difficulties at 29 months, and mothers' reports of children's sleep at 29 months. In 2013, we conducted repeated measures anovas and manovas including children's gender. RESULTS: Extended night-time waking patterns (wakes of ≥20 minutes) were associated with mothers' and fathers' lower sense of parenting impact and higher overprotectiveness and mothers' lower self-efficacy and higher coerciveness for 29-month-old children. In the extended waking group, mothers consistently reported lower self-efficacy, higher overprotectiveness and lower parenting impact at 5, 17 and 29 months. For those children, fathers were only more overprotective at 5 and 29 months. Regarding 29-month-old children's behaviour, children in the extended night waking group had highest scores on externalizing and internalizing behaviours. Girls had higher scores on shyness/inhibition and boys had higher scores on aggression/hyperactivity. CONCLUSION: Mothers' and fathers' parenting cognitions and behaviours are affected by 29-month-old children's night waking patterns and night waking patterns are associated with children's behavioural problems.

Cochlear implantation among deaf children with additional disabilities: parental perceptions of benefits, challenges, and service provision.

Although increasing numbers of children with additional disabilities are receiving cochlear implants (CIs), little is known about family perspectives of the benefits and the challenges of cochlear implantation in this pediatric population. This study examines perceptions among parents of deaf children with additional disabilities regarding satisfaction with service provision, benefits, and challenges of the CI process. This was a mixed-methods study, which included a survey and interviews. Twenty-three families of deaf children with additional disabilities participated in this study, and 17 of these parents participated in in-depth interviews regarding their child's experience with the CI, including benefits and challenges. Interviews were analyzed through inductive thematic analysis. Parent-perceived benefits of cochlear implantation included children's improved sound awareness, communication skills, and greater well-being compared to preimplantation status. However, the majority of families felt that they and their children were not receiving enough services. Major challenges included managing funding; coping with limited availability of specialized services, particularly in rural areas; and continuing concerns about the child's communication, social skills, and academic performance. Results suggest that children with additional disabilities benefit from CIs, but they and their families also face unique challenges that professionals should consider when working with these families.

Social support for parents of deaf children: moving toward contextualized understanding.

In light of claims that social support needs to be defined within specific context, we conducted a metasynthesis to identify ways that social support has been studied and contextualized in research focused on hearing parents of children with hearing loss. A literature search of published articles was conducted to identify research studies related to support and hearing parents of children with hearing loss. Our search yielded 108 items from Psycinfo and 154 items from Web of Science; 26 studies met our inclusion criteria. Our analyses involved summary and integration of information regarding research methods, guiding theoretical frameworks, and findings in relation to diverse support contexts. We found that it is the multidimensionality of social support and its specific functions, individually and in combination, that are particularly relevant in informing family-centered service provision. Further understanding of the multidimensional and dynamic nature of support could occur through investigation of diverse functions of support within and across ecological contexts. Findings from this study contributed to a descriptive framework that can be used to explore the multidimensionality of support; facilitate use of methods that assess specific support functions; and also inform the development of interventions that are responsive and match the needs of parents.

Trajectories of adaptive functioning from early childhood to adolescence in autism: Identifying turning points and key correlates of chronogeneity.

Background: Previous research has demonstrated heterogeneous adaptive outcomes across the autism spectrum; however, the current literature remains limited in elucidating turning points and associated factors for longitudinal variability (chronogeneity). To address these empirical gaps, we aimed to provide a finer-grained characterization of trajectories of adaptive functioning from early childhood to adolescence in autism. Methods: Our sample (N = 406) was drawn from an inception cohort of children diagnosed Autistic at ages 2-5. Adaptive functioning was assessed with Vineland Adaptive Behavior Scales (VABS, 2nd Edition) across 6 visits from the time of diagnosis by age 18. Parallel-process latent growth curve modeling were used to estimate domain-level VABS trajectories, followed by latent class growth analysis to identify trajectory subgroups. Child characteristics at diagnosis, family demographics, and participation outcomes at adolescence were compared across subgroups. Results: Piecewise latent growth models best described VABS trajectories with two turning points identified at around ages 5-6 and 9-10, respectively reflecting transitions into school age and early adolescence. We parsed four VABS trajectory subgroups that vary by level of functioning and change rate for certain domains and periods. Around 16% of the sample exhibited overall adequate functioning (standard score >85) with notable early growth and social adaptation during adolescence. About 21% showed low adaptive functioning (standard score ≤70), with decreasing slopes by age 6 followed by improvements in communication and daily-living skills by age 10. The other two subgroups (63% in total) were characterized by adaptive functioning between low and adequate levels, with relatively stable trajectories entering school age. These subgroups differed most in their cognitive ability at diagnosis, household income, and social participation in adolescence. Conclusions: We identified key individual and family characteristics and time windows associated with distinct adaptive functioning trajectories, which have important implications for providing timely and tailored supports to Autistic people across developmental stages.