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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.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastornos del Desarrollo del Lenguaje , Niño , Preescolar , Humanos , Trastorno del Espectro Autista/diagnóstico , Trastorno Autístico/complicaciones , Estudios Longitudinales , Estudios Prospectivos , Trastornos del Desarrollo del Lenguaje/complicaciones , Habla , Desarrollo del LenguajeRESUMEN
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.
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Trastorno del Espectro Autista , Trastorno Autístico , Adolescente , Trastorno Autístico/complicaciones , Niño , Función Ejecutiva , Humanos , Salud Mental , PadresRESUMEN
On February 5, 2022, the field of augmentative and alternative communication (AAC) lost a giant when Dr. David "Dave" Beukelman passed away. As the readership of this journal is aware, Dave was one of the principal founders of the AAC field and devoted his career to providing a voice to those without one. Before AAC became a field, people who could not talk were invisible or seldom noticed, unless they were in the way. For more than 40 years, he was a catalyst for change in AAC clinical practice, research, dissemination, teaching, and public policy development. This tribute aims to honor Dave's lifelong mission of serving others by sharing some of his most timeless and valued lessons. Each lesson begins with one of Dave's most enduring quotes that is then followed by a brief synopsis of the lesson Dave hoped to convey.
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Equipos de Comunicación para Personas con Discapacidad , Trastornos de la Comunicación , Voz , Historia del Siglo XX , Historia del Siglo XXI , Humanos , MasculinoRESUMEN
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.
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Trastorno del Espectro Autista , Trastorno Autístico , Ansiedad/epidemiología , Trastornos de Ansiedad/epidemiología , Trastorno del Espectro Autista/epidemiología , Niño , Preescolar , Humanos , Instituciones AcadémicasRESUMEN
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.
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Trastorno del Espectro Autista , Trastorno Autístico , Niño , Preescolar , Femenino , Humanos , Lenguaje , Masculino , Instituciones Académicas , Ajuste SocialRESUMEN
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.
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Trastorno del Espectro Autista/complicaciones , Trastorno del Espectro Autista/psicología , Trastornos del Desarrollo del Lenguaje/complicaciones , Trastornos del Desarrollo del Lenguaje/diagnóstico , Desarrollo del Lenguaje , Trastorno Autístico/complicaciones , Trastorno Autístico/psicología , Preescolar , Femenino , Humanos , Lenguaje , Trastornos del Desarrollo del Lenguaje/psicología , Estudios Longitudinales , MasculinoRESUMEN
OBJECTIVE: Although feeding problems are a common concern in children with autism spectrum disorder (ASD), few longitudinal studies have examined their persistence over time. The purpose of this study was to examine the developmental progression of feeding problems across four time points in preschoolers with ASD. METHODS: Group-based trajectory analyses revealed four distinct trajectories of feeding problems in our sample (N = 396). RESULTS: The majority of children showed levels of feeding problems that were low from the outset and stable (Group 1; 26.3%) or moderate and declining over time (Group 2; 38.9%). A third group (26.5%) showed high levels of feeding problems as preschoolers that declined to the average range by school age. Few participants (8.3%) showed evidence of severe chronic feeding problems. Feeding problems were more highly correlated with general behavior problems than with autism symptom severity. CONCLUSIONS: Overall, our findings demonstrated that in our sample of children with ASD, most feeding problems remitted over time, but a small subgroup showed chronic feeding problems into school age. It is important to consider and assess feeding problems in ASD against the backdrop of typical development, as many children with ASD may show improvement with age.
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Trastorno del Espectro Autista/fisiopatología , Desarrollo Infantil/fisiología , Trastornos de Ingestión y Alimentación en la Niñez/fisiopatología , Problema de Conducta , Trastorno del Espectro Autista/complicaciones , Niño , Preescolar , Trastornos de Ingestión y Alimentación en la Niñez/etiología , Femenino , Humanos , Estudios Longitudinales , MasculinoRESUMEN
BACKGROUND: Early diagnosis of autism spectrum disorder (ASD) is essential in most Canadian jurisdictions to access interventions that improve long-term child outcomes. Our main objective was to identify factors associated with timing of ASD diagnosis in five provinces across Canada. METHODS: Factors influencing age of diagnosis were assessed in the analyses of an inception cohort of children diagnosed with ASD between ages 2 and 5 years. We examined bivariate associations and using a series of multiple variable regression models, evaluated the unique contributions of developmental functioning, ASD symptoms and demographic variables. Children with known genetic abnormalities, or severe sensory or motor impairments interfering with assessment were excluded. RESULTS: Participants were 421 children (84.6% boys). The mean age of diagnosis was 38.2 months (SD=8.7), an average of 19 months after parents identified initial concerns. Factors associated with later diagnosis included more advanced language and cognitive skills, and higher levels of restricted repetitive behaviour symptoms. Child sex and family demographics were not associated with age of diagnosis. In regression analyses, language and cognitive skills accounted for 6.8% of variance in age of diagnosis and ASD symptoms contributed an additional 5.5%. Provincial site accounted for 4.0% of variance in age of diagnosis, independent of developmental skills and ASD symptoms. INTERPRETATION: Diagnosis of ASD occurred, on average, 19 months after parents' initial concerns. Language and cognitive skills, symptom severity and provincial site accounted for variation in age of ASD diagnosis in this Canadian cohort. Variable presentation across the developmental continuum must be considered in planning assessment services to ensure timely ASD diagnosis so that outcomes can be improved. Policy and practice leadership is also needed to reduce interprovincial variability.
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The co-occurring development of internalizing and externalizing problems were examined in an inception cohort of 392 children diagnosed with autism spectrum disorder at age 3 who were assessed on four occasions. Results indicated that internalizing and externalizing problems were stable over time and highly comorbid. Joint trajectory analysis suggested that 13% of the sample followed a dual high-risk trajectory. High risk was not found to be associated with intellectual ability or autism spectrum disorder symptom severity but was linked to lower income and gender: more girls than boys were found in the high/stable internalizing problems trajectory. The results suggest that 1 in 4 preschoolers followed a trajectory of internalizing or externalizing problems (or a combination of the two) that could be characterized as clinically elevated.
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Agresión/psicología , Trastorno del Espectro Autista/psicología , Depresión/psicología , Problema de Conducta/psicología , Trastorno del Espectro Autista/complicaciones , Trastorno del Espectro Autista/diagnóstico , Preescolar , Depresión/complicaciones , Femenino , Humanos , Masculino , Índice de Severidad de la Enfermedad , Factores SexualesRESUMEN
BACKGROUND: Differences in how developmental pathways interact dynamically in children with autism spectrum disorder (ASD) likely contribute in important ways to phenotypic heterogeneity. This study aimed to model longitudinal reciprocal associations between social competence (SOC) and language (LANG) pathways in young children with ASD. METHODS: Data were obtained from 365 participants aged 2-4 years who had recently been diagnosed with an ASD and who were followed over three time points: baseline (time of diagnosis), 6- and 12 months later. Using structural equation modeling, a cross-lagged reciprocal effects model was developed that incorporated auto-regressive (stability) paths for SOC (using the Socialization subscale of the Vineland Adaptive Behavior Scales-2) and LANG (using the Preschool Language Scale-4 Auditory Comprehension subscale). Cross-domain associations included within-time correlations and lagged associations. RESULTS: SOC and LANG were highly stable over 12 months. Small reciprocal cross-lagged associations were found across most time points and within-time correlations decreased over time. There were no differences in strength of cross-lagged associations between SOC-LANG and LANG-SOC across time points. Few differences were found between subgroups of children with ASD with and without cognitive impairment. CONCLUSIONS: Longitudinal reciprocal cross-domain associations between social competence and language were small in this sample of young children with ASD. Instead, a pattern emerged to suggest that the two domains were strongly associated around time of diagnosis in preschoolers with ASD, and then appeared to become more independent over the ensuing 12 months.
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Trastorno del Espectro Autista/epidemiología , Trastornos del Desarrollo del Lenguaje/epidemiología , Habilidades Sociales , Trastorno del Espectro Autista/psicología , Canadá/epidemiología , Preescolar , Comorbilidad , Femenino , Estudios de Seguimiento , Humanos , Lenguaje , Trastornos del Desarrollo del Lenguaje/psicología , Estudios Longitudinales , Masculino , Estudios Prospectivos , Conducta SocialRESUMEN
OBJECTIVE: The factor structure and validity of the Behavioral Pediatrics Feeding Assessment Scale (BPFAS; Crist & Napier-Phillips, 2001) were examined in preschoolers with autism spectrum disorder (ASD). METHODS: Confirmatory factor analysis was used to examine the original BPFAS five-factor model, the fit of each latent variable, and a rival one-factor model. None of the models was adequate, thus a categorical exploratory factor analysis (CEFA) was conducted. Correlations were used to examine relations between the BPFAS and concurrent variables of interest. RESULTS: The CEFA identified an acceptable three-factor model. Correlational analyses indicated that feeding problems were positively related to parent-reported autism symptoms, behavior problems, sleep problems, and parenting stress, but largely unrelated to performance-based indices of autism symptom severity, language, and cognitive abilities, as well as child age. CONCLUSION: These results provide evidence supporting the use of the identified BPFAS three-factor model for samples of young children with ASD.
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Trastorno del Espectro Autista/complicaciones , Trastorno del Espectro Autista/psicología , Trastornos de Ingestión y Alimentación en la Niñez/complicaciones , Trastornos de Ingestión y Alimentación en la Niñez/diagnóstico , Padres/psicología , Encuestas y Cuestionarios/normas , Trastorno Autístico , Trastornos Generalizados del Desarrollo Infantil/psicología , Preescolar , Análisis Factorial , Conducta Alimentaria/psicología , Trastornos de Ingestión y Alimentación en la Niñez/psicología , Femenino , Humanos , Estudios Longitudinales , Masculino , Responsabilidad Parental/psicología , Pediatría , Psicometría/métodos , Reproducibilidad de los ResultadosRESUMEN
The goal of this Forum article is to examine the progress that has been made over the past 20 years in providing opportunities for community living, inclusive schooling, and integrated employment to people with severe intellectual or developmental disabilities who rely on Augmentative and Alternative Communication (AAC). Recent research and statistical data from the United States and elsewhere are used to describe both the gains that have been made and the challenges that still remain. Directions for future advocacy and research efforts are also included.
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BACKGROUND: Autism spectrum disorder (ASD) is characterized by notable phenotypic heterogeneity, which is often viewed as an obstacle to the study of its etiology, diagnosis, treatment, and prognosis. On the basis of empirical evidence, instead of three binary categories, the upcoming edition of the DSM 5 will use two dimensions - social communication deficits (SCD) and fixated interests and repetitive behaviors (FIRB) - for the ASD diagnostic criteria. Building on this proposed DSM 5 model, it would be useful to consider whether empirical data on the SCD and FIRB dimensions can be used within the novel methodological framework of Factor Mixture Modeling (FMM) to stratify children with ASD into more homogeneous subgroups. METHODS: The study sample consisted of 391 newly diagnosed children (mean age 38.3 months; 330 males) with ASD. To derive subgroups, data from the Autism Diagnostic Interview-Revised indexing SCD and FIRB were used in FMM; FMM allows the examination of continuous dimensions and latent classes (i.e., categories) using both factor analysis (FA) and latent class analysis (LCA) as part of a single analytic framework. RESULTS: Competing LCA, FA, and FMM models were fit to the data. On the basis of a set of goodness-of-fit criteria, a 'two-factor/three-class' factor mixture model provided the overall best fit to the data. This model describes ASD using three subgroups/classes (Class 1: 34%, Class 2: 10%, Class 3: 56% of the sample) based on differential severity gradients on the SCD and FIRB symptom dimensions. In addition to having different symptom severity levels, children from these subgroups were diagnosed at different ages and were functioning at different adaptive, language, and cognitive levels. CONCLUSIONS: Study findings suggest that the two symptom dimensions of SCD and FIRB proposed for the DSM 5 can be used in FMM to stratify children with ASD empirically into three relatively homogeneous subgroups.
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Trastornos Generalizados del Desarrollo Infantil/psicología , Trastornos Generalizados del Desarrollo Infantil/diagnóstico , Preescolar , Análisis Factorial , Femenino , Humanos , Entrevista Psicológica , Masculino , Modelos Psicológicos , FenotipoRESUMEN
LAY ABSTRACT: Currently, our understanding of the adolescent period for autistic youth has relied on the expertise of researchers, clinicians, parents, and teachers, yet rarely involves their unique first-person experiences. Our study attempted to understand the experiences and perspectives of autistic adolescents in their home, school, and community environments using the Autism Voices protocol, a semi-structured interview specifically designed and tailored to engage with autistic youth with various language and intellectual levels. The analysis of the 31 interviews conducted with autistic adolescents aged 11-18 years highlighted six themes: (1) autistic identities, (2) thinking about the future, (3) seeking social connection on their own terms, (4) seeking autonomy, (5) school as both a stressor and social facilitator, and (6) experiences of stress and anxiety. These results highlight similarities and differences in the adolescent experiences of autistic youth compared to their typically developing peers. Our findings suggest that by removing assumptions about the experiences of autistic individuals and investing in inclusive interview methods, we can faithfully capture the experiences of autistic youth regardless of their communication and cognitive abilities. Being able to capture and amplify these diverse voices will facilitate the active involvement of autistic communities in research and clinical and policy decisions that impact them.
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Trastorno del Espectro Autista , Trastorno Autístico , Humanos , Adolescente , Comunicación , Esperanza , AnsiedadRESUMEN
We examined the narrative abilities of bilingual and monolingual children on the autism spectrum (AS), whether bilinguals presented stronger social and pragmatic language abilities compared to monolinguals, and the link between narrative, social, and pragmatic language abilities.The narrative, social, and pragmatic language skills of school-aged bilinguals (n = 54) and monolinguals (n = 80) on the AS were assessed using normed measures. Language exposure was estimated through a parent questionnaire.Bilinguals performed similarly to monolinguals on measures of narrative, social, and pragmatic language skills. However, balanced bilinguals performed better on a nonliteral language task.Overall, results indicate that bilingual children on the AS can become as proficient in using language as monolinguals and may enjoy a bilingual advantage.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastornos del Desarrollo del Lenguaje , Multilingüismo , Humanos , Niño , Trastorno del Espectro Autista/diagnóstico , LenguajeRESUMEN
BACKGROUND: Maximizing measurement accuracy is an important aim in child development assessment and research. Parents are essential informants in the diagnostic process, and past research suggests that certain parental characteristics may influence how they report information about their children. This has not been studied in autism spectrum disorders (ASD) to date. We aimed, therefore, to investigate the possible effect that maternal depression might have on a mother's reports of her child's ASD behaviors. Using structural equation modeling, we disaggregated shared from unique variation in the association between latent variable measures of maternal depression and ASD behaviors. METHODS: Data were obtained from a study of preschoolers aged 2-4 newly diagnosed with ASD (n = 214). Information from a parent questionnaire, a semi-structured parent interview, and a semi-structured observational assessment was used to develop a latent variable measure of child ASD behaviors. Mothers reported on their own depression symptoms. We first modeled the covariance between maternal depression and child ASD behavior. Then, to quantify unique variation, we added covariance terms between maternal depression and the residual variation associated with the individual measures of child ASD behaviors. RESULTS: The model demonstrated excellent fit to the underlying data. Maternal self-report of depression symptoms exhibited a significant association with the unique variance of the questionnaire report but not with the latent variable measure of child ASD behavior. A gradient pattern of association was demonstrated between maternal depression and the unique variance of the ASD measures: most strongly for the maternal questionnaire report, more weakly for the maternal semi-structured interview, and to a trivial extent for the observational interview. CONCLUSIONS: Parental depression may influence reporting of ASD behaviors in preschoolers. Shared method effects may also contribute to bias. This finding highlights the importance of obtaining multimethod reports of child ASD symptoms.
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Trastornos Generalizados del Desarrollo Infantil/diagnóstico , Trastornos Generalizados del Desarrollo Infantil/epidemiología , Trastorno Depresivo/epidemiología , Relaciones Madre-Hijo , Madres/psicología , Adulto , Sesgo , Canadá/epidemiología , Conducta Infantil/psicología , Trastornos Generalizados del Desarrollo Infantil/psicología , Preescolar , Trastorno Depresivo/psicología , Femenino , Humanos , Entrevista Psicológica , Estudios Longitudinales , Masculino , Madres/estadística & datos numéricos , Encuestas y CuestionariosRESUMEN
A randomized feasibility trial of a parent coaching (PC) intervention was conducted across 16 community agencies in a Canadian province. Parents of toddlers with suspected autism were assigned to either a PC group (n = 24) or an enhanced community treatment (ECT) group (n = 25). PC participants received 24 weeks of coaching support from community service providers trained in the project. Children in both groups also received available community services and supplementary materials. PC children made significantly greater gains in word understanding and PC parents had significantly higher quality of life, satisfaction, and self-efficacy scores. Results are discussed in terms of the challenges of conducting feasibility studies in community settings and the lessons learned in the project.
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Trastorno del Espectro Autista , Trastorno Autístico , Preescolar , Humanos , Trastorno del Espectro Autista/terapia , Trastorno Autístico/diagnóstico , Trastorno Autístico/terapia , Canadá , Intervención Educativa Precoz/métodos , Estudios de Factibilidad , Padres , Calidad de VidaRESUMEN
This study evaluated the fidelity and effectiveness of a parent coach training program for toddlers at risk for autism spectrum disorder and identified factors required for successful training implementation under real-world conditions. Training addressed four tiers of clinical competence and was delivered to early intervention providers across 23 partner agencies in a large Canadian province. Results indicated that mean trainee fidelity scores were within the range reported in previous community-based training studies but there was considerable variability across trainees. Implementation facilitators included agency learning climate, leadership support, and trainee readiness for change. Implementation barriers included time/caseload demands and challenges related to technology learning and infrastructure. Results have implications for parent coach training in community settings.
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Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/terapia , Canadá , Intervención Educativa Precoz/métodos , Humanos , PadresRESUMEN
LAY ABSTRACT: The perspective of autistic individuals is often left uncaptured, and as a result they are often excluded from making decisions that impact them. Conventional communication can be challenging for many autistic individuals, especially those who are minimally verbal or who have an associated intellectual disability. Currently, a lack of appropriate methods to capture voices across the spectrum is a barrier. In the present study, we developed the Autism Voices protocol using universal design principles to capture the perspectives and experiences of autistic youth with a range of language or intellectual abilities. This protocol was then used with 33 autistic youth aged 11 to 18 years. A scoring rubric was developed to capture the unconventional communication used by the participants and the mitigation strategies used by interviewers to facilitate the interview. Many components of the protocol were found to effectively facilitate communication between the participant and interviewer, including the use of picture cards to support verbal questions/prompts, the fact that participants could respond with their preferred communication methods (writing, texting, pointing), and the fact that interviews were applied flexibly to adapt to each participant. Unconventional communication and mitigation strategies were mostly observed in interviews with minimally verbal individuals, but a fine-grained analysis showed participants were still communicating something through this unconventional communication. Our protocol could help promote the inclusion of more autistic individuals in research and showed that unconventional modes of communication like echolalia provide an understanding that participants' are invested in conversations and certain topics are more meaningful than others.
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Trastorno del Espectro Autista , Trastorno Autístico , Discapacidad Intelectual , Adolescente , Comunicación , Humanos , LenguajeRESUMEN
LAY ABSTRACT: Experiencing stressful life events, such as a parent having had serious illness, parental divorce, bullying and victimization, is known to increase risk for mental health difficulties in neurotypical children. However, few studies have looked at whether stressful life events have a similar impact in autistic youth and if any individual characteristics may moderate the impact of said life events. In this study, we tested whether in autistic children aged 7-11 years, exposure to family-level stressful life events predicted later mental health symptoms (and vice versa). We also tested whether associations between stressful life events and mental health symptoms differed depending on the child's level of cognitive flexibility. We found stressful life events only predicted internalizing symptoms (such as anxiety and depression) in children with clinically significant difficulties in cognitive flexibility (as rated by their parents). Mental health symptoms did not predict future exposure to stressful life events. Results suggest that information about exposure to stressful life events and cognitive inflexibility may be helpful in identifying autistic children who may be at risk of developing anxiety and depression symptoms.