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OBJECTIVE: The COVID-19 pandemic required behavioral researchers to rapidly pivot to the implementation of remote study protocols to facilitate data collection. Remote implementation required robust and flexible research protocols including reliable audio/visual technology that met all the quality, security, and privacy hallmarks of lab-based equipment, while also being portable and usable by nontechnical staff and participants. The project's primary purpose was to develop a technology kit that could be deployed for data collection in homes with young children. The secondary objective was to determine the feasibility of the kit for use longitudinally across four disparate sites. METHOD: User-centered design principles were employed in the development and implementation of a technology kit deployed across urban, suburban, and rural participant locations in four states. Preliminary feasibility and usability data were gathered to determine the reliability of the kit across three timepoints. RESULTS: In study 1, a technology kit was constructed addressing all project needs including the provision of the internet to connect remotely with participants. Staff training protocols and participant-facing materials were developed to accompany deployment procedures. In study 2, data gathered in technology logs demonstrated successful capturing of video footage in 96% of opportunities with most technology challenges mitigated. Subsequent behavioral coding indicated 100% of captured assessment footage has been successfully coded to date. Moreover, participants needed less support for technology setup at their later timepoints, and staff rated the kit as highly usable. CONCLUSION: This study offers a model for future development of technology use in remote community- and home-based pediatric research.
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OBJECTIVE: To examine predictors of implementation and perceived usefulness of four empirically supported strategies for treating externalizing behavior in youths with ASD. METHOD: Participants were 557 providers in the United States with experience treating externalizing behavior in youths with ASD. Generalized estimating equations were used to determine whether self-reported use and usefulness of four empirically supported intervention strategies (functional communication training, functional behavior analysis, visual tools/supports, token economy) were predicted by key provider characteristics: professional discipline, experience, and practice specialization (across three indices) in ASD. Post-hoc contrasts were performed to identify provider groups reporting the greatest use and usefulness of the four strategies. RESULTS: Strategies were most often used by providers with behavioral backgrounds, though perceived usefulness of strategies varied by providers' professional discipline. Compared to providers with more than 10 years of experience, less experienced providers endorsed the highest average use and usefulness of almost all strategies. Regarding ASD practice specialization, a lower volume of ASD cases, treating fewer youths with ASD over a 5-year period, and having a higher proportion of practice time working with youths with ASD reported were associated with greater use and usefulness of the strategies. CONCLUSIONS: Empirically supported strategies are widely used by and perceived as useful by providers who treat youths with ASD and co-occurring externalizing behaviors. Use and usefulness varies based on provider discipline, experience, and ASD practice specialization.
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Importance: In the US, children with signs of autism often experience more than 1 year of delay before diagnosis and often experience longer delays if they are from racially, ethnically, or economically disadvantaged backgrounds. Most diagnoses are also received without use of standardized diagnostic instruments. To aid in early autism diagnosis, eye-tracking measurement of social visual engagement has shown potential as a performance-based biomarker. Objective: To evaluate the performance of eye-tracking measurement of social visual engagement (index test) relative to expert clinical diagnosis in young children referred to specialty autism clinics. Design, Setting, and Participants: In this study of 16- to 30-month-old children enrolled at 6 US specialty centers from April 2018 through May 2019, staff blind to clinical diagnoses used automated devices to measure eye-tracking-based social visual engagement. Expert clinical diagnoses were made using best practice standardized protocols by specialists blind to index test results. This study was completed in a 1-day protocol for each participant. Main Outcomes and Measures: Primary outcome measures were test sensitivity and specificity relative to expert clinical diagnosis. Secondary outcome measures were test correlations with expert clinical assessments of social disability, verbal ability, and nonverbal cognitive ability. Results: Eye-tracking measurement of social visual engagement was successful in 475 (95.2%) of the 499 enrolled children (mean [SD] age, 24.1 [4.4] months; 38 [8.0%] were Asian; 37 [7.8%], Black; 352 [74.1%], White; 44 [9.3%], other; and 68 [14.3%], Hispanic). By expert clinical diagnosis, 221 children (46.5%) had autism and 254 (53.5%) did not. In all children, measurement of social visual engagement had sensitivity of 71.0% (95% CI, 64.7% to 76.6%) and specificity of 80.7% (95% CI, 75.4% to 85.1%). In the subgroup of 335 children whose autism diagnosis was certain, sensitivity was 78.0% (95% CI, 70.7% to 83.9%) and specificity was 85.4% (95% CI, 79.5% to 89.8%). Eye-tracking test results correlated with expert clinical assessments of individual levels of social disability (r = -0.75 [95% CI, -0.79 to -0.71]), verbal ability (r = 0.65 [95% CI, 0.59 to 0.70]), and nonverbal cognitive ability (r = 0.65 [95% CI, 0.59 to 0.70]). Conclusions and Relevance: In 16- to 30-month-old children referred to specialty clinics, eye-tracking-based measurement of social visual engagement was predictive of autism diagnoses by clinical experts. Further evaluation of this test's role in early diagnosis and assessment of autism in routine specialty clinic practice is warranted. Trial Registration: ClinicalTrials.gov Identifier: NCT03469986.
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Transtorno Autístico , Tecnologia de Rastreamento Ocular , Comportamento Social , Percepção Visual , Pré-Escolar , Humanos , Lactente , Instituições de Assistência Ambulatorial , Asiático , Transtorno Autístico/diagnóstico , Transtorno Autístico/fisiopatologia , Transtorno Autístico/psicologia , Movimentos Oculares/fisiologiaRESUMO
Understanding usual care is important to reduce health disparities and improve the dissemination of evidence-based practices for youth (ages 7-22 years) with autism spectrum disorder (ASD). A barrier to describing "usual ASD care" is the lack of a common vocabulary and inventory of the practices used by a diverse provider field. To address this barrier, we gathered input from expert providers to develop an inventory of usual care practices and assess expert familiarity and perceptions of these practices as interventions for anxiety, externalizing, and social difficulties in ASD. Purposeful sampling recruited 66 expert ASD providers representing multiple disciplines from 5 sites. Via a 2-round Delphi poll, experts reviewed, suggested revisions to and rated 49 literature-derived practices on several dimensions (familiarity, usefulness, common use, research support). A revised list of 55 practices and anonymous summary of group characteristics and ratings was then returned for further review. Results yielded 55 intervention practices, 48 of which were identified as "familiar" approaches by consensus (≥ 75% endorsement). Greater variation was observed in practices identified by consensus as most often used, useful, and research supported, depending upon the target problem. Findings provide an inventory of practices, reflective of the multidisciplinary language and approaches of expert ASD providers. This inventory may be used to better assess what constitutes usual care for youth with ASD in the United States. Moreover, findings offer insights from clinical experts regarding the range and acceptability of practices that may inform and ground treatment research, dissemination, and implementation efforts.
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Transtorno do Espectro Autista/terapia , Adolescente , Adulto , Criança , Consenso , Técnica Delphi , Feminino , Humanos , Masculino , Instituições Acadêmicas , Adulto JovemRESUMO
BACKGROUND/AIMS: COVID-19 necessitated a shift to virtual data collection for many research projects, providing the opportunity for novel approaches to carrying out multi-site clinical trials. Virtual multiteam systems (VMTS) are a type of team structure in which multiple geographically dispersed teams collaborate using technology-mediated communication. The article presents a case study of our use of VMTS, in response to COVID-19, to carry out a multisite randomized hybrid effectiveness-implementation trial of a caregiver-implemented intervention. METHODS: We describe how we modified our team structure from predominantly site-specific, co-located teams to predominantly cross-site, virtual teams. We then present examples of how we have conducted the two primary data collection activities virtually. To demonstrate the feasibility of this approach, we present participant demographic information, the percent of cross-site data collection activities, and fidelity data. RESULTS: In the first 20 months of data collection, we have enrolled 108 EI providers and 132 families, with 17% and 9% attrition respectively. The family sample is highly diverse in terms of race/ethnicity, parent education, and household income. The majority of provider training activities and roughly 50% of family assessment activities have been conducted cross-site. Fidelity is high, with no differences across site. CONCLUSIONS: Our data illustrate the feasibility of using virtual teams, training, and assessment in a multisite clinical trial in the Part C system. We discuss the strengths and challenges of this approach, as well as lessons learned to facilitate the planning of future multisite randomized clinical trials which may benefit from this approach. CLINICAL TRIALS: NCT05114538.
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COVID-19 , Humanos , Cuidadores , Coleta de Dados/métodos , SARS-CoV-2 , Estudos Multicêntricos como Assunto/métodos , Feminino , Projetos de Pesquisa , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos , MasculinoRESUMO
COVID-19 required many research teams to shift from in-person to remote assessments, which posed both procedural and theoretical challenges. While research has explored the utility of remote assessments for autism diagnosis from the perspective of families and clinicians, less is known about their application in clinical trials. This paper describes the development of a remote research assessment protocol for a randomized clinical trial focusing on the implementation of reciprocal imitation teaching (RIT) with toddlers in Part C early intervention. This project spans two phases. For Phase 1, our team developed and documented a series of steps utilizing user-centered design (UCD) strategies (e.g., recruiting potential users, creating a prototype, engaging in iterative development) for the purpose of redesigning an assessment protocol for a remote environment. For Phase 2, we examined preliminary outcomes of the redesign process. Primary end users (assessors) rated post-redesign usability and acceptability, while acceptability was examined using attrition data from secondary end users (family participants). Preliminary fidelity of implementation was also examined. The iterative redesign process allowed the research team to refine aspects of the assessment that ultimately led to promising preliminary ratings of usability, acceptability, and feasibility, as well as high fidelity. Preliminary data suggest that the redesigned assessment appears to be an acceptable, feasible, and usable tool for autism clinical trial research and that assessors can use it with fidelity. Further research is needed to examine the reliability and validity of the assessment, as well as implementation characteristics on a larger scale.
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LAY ABSTRACT: In this article, we outline a stakeholder-driven research agenda to guide future early intervention research for children with autism. Our research team collaborated with autism service providers, parents of individuals with autism, and autistic people to create this research agenda by (1) conducting workshops with community members and (2) distributing a survey to a larger number of community members around the country. The finalized research agenda includes (1) Guiding Principles for current and future research, (2) Research Priorities focused on early intervention for individuals with autism, and (3) Systems Implications to consider in future clinical, research, and policy efforts for early intervention. The full version of the research agenda is available in Supplemental Material. This article lists the main points of the research agenda and discusses unique themes highlighted by the community members. One main conclusion is that researchers need to include community members in decision-making and consultant positions throughout the research process to best meet the needs of the broader autism community. We have created a researcher workbook which we hope may facilitate these community consultation efforts. This workbook is available in Supplemental Material.
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LAY ABSTRACT: Early Intervention systems provide therapeutic services to families of young children birth to 3 years with developmental delays and are considered a natural access point to services for young children and their families. Research studies in the autism field have been interested in training providers to deliver evidence-based practices in Early Intervention systems to increase access to services for young children with an increased likelihood of being autistic. However, research has often overlooked that Early Intervention systems prioritize family-centered care, an approach to working with families that honors and respects their values and choices and that provides supports to strengthen family functioning. This commentary points out that family-centered care deserves greater attention in research being done in Early Intervention systems. We describe how family-centered care may shape how interventions are delivered, and discuss directions for future research to evaluate the impact of family-centered care alongside intervention delivery.
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Transtorno do Espectro Autista , Transtorno Autístico , Criança , Humanos , Pré-Escolar , Intervenção Educacional Precoce , Assistência Centrada no PacienteRESUMO
Introduction: To illustrate the landscape of community-based care for autistic youth in the United States, we identified transdisciplinary psychosocial intervention practice sets that community providers report utilizing to care for this population, and examined characteristics associated with provider-reported utilization. Methods: The Usual Care for Autism Study (UCAS) Survey assessed provider demographics and provider-reported use of transdisciplinary practices for common ASD co-occurring problems: social difficulties, externalizing behaviors, and anxiety. Community practitioners (N = 701) from allied health, behavioral, education, medical, mental health and other disciplines who treat or work with autistic youth (7-22 years) participated. Results: Exploratory factor analysis yielded four factors: Consequence-Based Strategies (CBS), Cognitive-Behavioral and Therapy Strategies (CBTS), Antecedent-Based Strategies (ABS), and Teaching Strategies (TS). Providers across disciplines reported utilizing ABS more often than other sets. Providers from behavioral disciplines, with less than 4-year or Master degrees, or with more experience reported the most use of ABS, CBS and CBTS. Medical and behavioral providers reported the most use of TS. Setting and child characteristics were associated with practice set use, indicating variability by disability and client socioeconomic status. Discussion: Findings reflect the complexity and inconsistency of the service landscape for autistic youth across the U.S. Only by understanding the service landscape and predictors of practice utilization, can researchers, policymakers, provider groups, and the autistic community facilitate effective implementation strategy development and use to ultimately improve community-based care.
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Background: Parents of autistic children experience increased levels of caregiver strain and adverse mental health outcomes, even in comparison to parents of children with other neurodevelopmental disabilities. Previous studies have largely attributed these increased levels of mental health concerns to their child behavioral concerns and autism symptomatology, but less attention has been given to other potential child factors, such as child adaptive functioning. Additionally, little is known about potential protective factors, such as parents' emotion regulation (ER) abilities, that may ameliorate the experience of caregiver strain, anxiety, and depression. Objective: The current study examined the impact of child characteristics (restricted and repetitive behaviors, adaptive functioning and behavioral concerns) on parent mental health outcomes (caregiver strain, anxiety, depression and wellbeing). Additionally, we explore parents' ER abilities as a moderator of the impact of child characteristic on parents' mental health outcomes. Results: Results of linear mixed effect models indicated a significant relationship between parents' ER abilities and all four parent outcomes. Additionally, children's adaptive functioning abilities and repetitive behaviors (RRBs) were significant predictors of caregiving strain. Parents' ER abilities were a significant moderator of the effect of children's repetitive behaviors and adaptive functioning challenges on caregiver strain, such that better ER abilities mitigated the impact of child clinical factors on caregiver strain. Finally, a significant difference was detected for mothers' and fathers' mental health, with mothers reporting higher caregiver strain, and more symptoms of anxiety and depression than did fathers. Conclusion: This study leveraged a large sample of autistic children and their biological parents to examine the relationship between children's clinical characteristics and parents' psychological wellbeing. Results indicate that, although parents of autistic children do experience high rates of internalizing mental health concerns that relate to child adaptive functioning and RRBs, parent ER abilities act as a protective factor against parents' adverse mental health outcomes. Further, mothers in our sample reported significantly higher rates of depression, anxiety, and caregiver strain, as compared with fathers.
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Objective: To examine patterns and predictors of familiarity with transdisciplinary psychosocial (e.g., non-pharmacologic) practices for practitioners treating youths with autism spectrum disorder (ASD) in the United States. Method: Practitioners (n = 701) from behavioral, education, medical, and mental health backgrounds who worked with youth (ages 7-22) with ASD completed the Usual Care for Autism Survey, which assessed provider demographics and self-reported familiarity with transdisciplinary treatment practices for the most common referral problems of ASD. We examined relations between provider-, setting-, and client-level characteristics with familiarity of key groups of the treatment practices (practice sets). Practice sets were identified using exploratory factor analysis (EFA), and demographic predictors of practice subsets were examined using generalized estimating equations (GEE). Results: The EFA yielded a three-factor solution: (1) environmental modifications/antecedent strategies; (2) behavior analytic strategies; and (3) cognitive strategies, with overall familiarity ranked in this order. Medical providers indicated the least familiarity across disciplines. More experience with ASD and treating those with intellectual disabilities predicted greater familiarity with only environmental modifications/antecedent strategies and behavior analytic, but not cognitive strategies. Experience treating low SES clients predicted familiarity with environmental modification and behavior analytic strategies while experience treating high SES clients predicted familiarity with behavior analytic and cognitive strategies. Conclusion: This is the first study to identify transdisciplinary, interpretable sets of practices for treating youth with ASD based on community providers' reported familiarity. Results highlight factors associated with familiarity with practice sets, which is essential for mapping practice availability, and optimizing training and dissemination efforts for youth with ASD.
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The COVID-19 pandemic, and associated social distancing mandates, has placed significant limitations on in-person health services, requiring creative solutions for supporting clinicians engaged in the diagnosis of autism spectrum disorder (ASD). This report describes the five virtual instruments available at the time of manuscript development for use by experienced clinicians making diagnostic determinations of ASD for toddlers across the 12- to 36-months age range. We focus on synchronous virtual assessments in which clinicians guide the child's caregiver through a range of assessment activities and observe spontaneous and elicited behaviors. Assessments are compared on dimensions of targeted behavioral domains, specific activities and presses employed, scoring approaches, and other key logistical considerations to guide instrument selection for use in varied clinical and research contexts.
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Transtorno do Espectro Autista , COVID-19 , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/epidemiologia , Cuidadores , Pré-Escolar , Humanos , Pandemias , SARS-CoV-2RESUMO
Differential diagnosis of young children with suspected autism spectrum disorder (ASD) is challenging, and clinician uncertainty about a child's diagnosis may contribute to misdiagnosis and subsequent delays in access to early treatment. The current study was designed to replicate and expand a recent report in this Journal (McDonnell et al. in J Autism Dev Disord 49:1391-1401, https://doi.org/10.1080/15374416.2020.1823850 , 2019), in which only 60% of diagnoses were made with complete certainty by clinicians evaluating 478 toddlers and preschool children referred for possible ASD to specialized clinics. In this study, secondary analyses were performed on diagnostic, demographic and clinical data for 496 16-30-month-old children who were consecutive referrals to a 6-site clinical trial executed by specialized centers with experienced clinicians following best-practice procedures for the diagnosis of ASD. Overall, 70.2% of diagnoses were made with complete certainty. The most important factor associated with clinician uncertainty was mid-level autism-related symptomatology. Mid-level verbal age equivalents were also associated with clinician uncertainty, but measures of symptomatology were stronger predictors. None of the socio-demographic variables, including sex of the child, was significantly associated with clinician certainty. Close to one third of early diagnoses of ASD are made with a degree of uncertainty. The delineation of specific ranges on the ADOS-2 most likely to result in clinician uncertainty identified in this study may provide an opportunity to reduce random subjectivity in diagnostic decision-making via calibration of young-child diagnostic thresholds based on later-age longitudinal diagnostic outcome data, and via standardization of decision-making in regard to clinical scenarios frequently encountered by clinicians.
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LAY ABSTRACT: Interventions that support social communication include several "components," or parts (e.g. strategies for working with children and families, targeting specific skills). Some of these components may be essential for the intervention to work, while others may be recommended or viewed as helpful but not necessary for the intervention to work. "Recommended" components are often described as "adaptable" because they can be changed to improve fit in different settings where interventions are offered or with different individuals. We need to understand which parts of an intervention are essential (and which are adaptable) when translating interventions from research to community settings, but it is challenging to do this before studying an intervention in the community. This article presents the CORE (COmponents & Rationales for Effectiveness) Fidelity Method-a new method for defining the essential components of evidence-based interventions-and applies it to a case example of Reciprocal Imitation Teaching, an intervention that parents are taught to deliver with their young children with social communication delays. The CORE Fidelity Method involves three steps: (1) gathering information from multiple sources; (2) integrating information from previous research and theory; and (3) drafting a CORE model for ongoing use. The benefits of using the CORE Fidelity Method may include: (1) improving consistency in intervention and research materials to help all providers emphasize the most important skills or strategies; (2) clarifying which parts of the intervention can be adapted; and (3) supporting future research that evaluates which intervention components work and how they work.
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Transtorno do Espectro Autista , Comportamento Imitativo , Criança , Pré-Escolar , Comunicação , Humanos , Pais/psicologia , Intervenção PsicossocialRESUMO
BACKGROUND: Intervention during the first years of life for children with autism spectrum disorder (ASD) may have the strongest impact on long-term brain development and functioning. Yet, barriers such as a shortage of trained professionals contribute to significant delays in service. The goal of this proof-of-concept study was to explore strategies that support timely and equitable deployment of ASD-specific interventions. METHODS: This 15-week, randomized proof-of-concept study explored the acceptability of a digital parent mediated intervention online reciprocal imitation training (RIT; a naturalistic developmental behavioral intervention) and compared it to a treatment as usual (TAU) control on parent and child outcomes. Eligible children were between 18 and 60 months, met the cutoff for ASD on the Autism Diagnostic Observation Schedule-2nd Edition and demonstrate significant social imitation deficits. Primary outcomes include the acceptability of RIT (Scale of Treatment Perceptions) and the feasibility of the Online RIT digital intervention (online RIT attributes). Secondary outcomes included parent fidelity (RIT parent fidelity form) and parental self-efficacy (Early Intervention Parenting Self-Efficacy Scale). Exploratory outcome measures included child social communication (Social Communication Checklist), child imitation skills (Unstructured Imitation Assessment), and family quality of life (Beach Center Family Quality of Life Scale). RESULTS: Twenty participants were randomized in a 1:1 fashion. The acceptability and feasibility of RIT and the Online RIT digital intervention were rated highly. Among the secondary outcomes, there were significant group differences in parent fidelity (p < .001) and self-efficacy (p = .029). On exploratory outcomes, there were group differences in child social communication (p = .048). There were no significant group differences in imitation ability (p = .05) or family quality of life (p = .22). LIMITATIONS: There are several limitations with this study, including the small sample size as well as lack of data on enactment and website engagement. This study was not able to address questions related to which variables predict program engagement and treatment response, which will be critical for determining which families may benefit from such a stepped-care delivery model. CONCLUSIONS: Overall, the Online RIT program delivered in a stepped-care format shows strong acceptability and holds promise as an innovative delivery model. Trial registration ClinicalTrials.gov, NCT04467073. Registered 10 July 2020- Retrospectively registered, https://clinicaltrials.gov/ct2/show/NCT04467073.
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Transtorno Autístico , Telemedicina , Transtorno do Espectro Autista/terapia , Criança , Pré-Escolar , Humanos , Pais , Qualidade de VidaRESUMO
Pediatric insomnia is common, impacting up to a third of typically-developing, healthy children, and over 80% of children with neurodevelopmental disorders or chronic medical conditions. Previous reviews of behavioral interventions for pediatric insomnia have had a limited focus on a single age group, a specific population, and/or only randomized controlled trials. Furthermore, few reviews have considered non-sleep outcomes of both children and their parents. This scoping review provides a broader context, including studies regardless of research design or population, along with sleep and non-sleep study outcomes. Clear gaps in the literature were identified, highlighting the need for additional research in different populations, including school-age children and adolescents, racial/ethnic groups around the world, as well as youth with medical or psychiatric disorders. In addition, more research is needed on different features of treatment, including the delivery mode, involvement of all family members, non-sleep outcomes, and long-term follow-up.
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Transtornos do Neurodesenvolvimento , Distúrbios do Início e da Manutenção do Sono , Adolescente , Terapia Comportamental , Criança , Humanos , Sono , Distúrbios do Início e da Manutenção do Sono/terapiaRESUMO
Although norm-referenced scores are essential to the identification of disability, they possess several features which affect their sensitivity to change. Norm-referenced scores often decrease over time among people with neurodevelopmental disorders who exhibit slower-than-average increases in ability. Further, the reliability of norm-referenced scores is lower at the tails of the distribution, resulting in floor effects and increased measurement error for people with neurodevelopmental disorders. In contrast, the person ability scores generated during the process of constructing a standardized test with item response theory are designed to assess change. We illustrate these limitations of norm-referenced scores, and relative advantages of ability scores, using data from studies of autism spectrum disorder and creatine transporter deficiency.
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Transtornos do Neurodesenvolvimento/diagnóstico , Testes Neuropsicológicos/normas , Avaliação de Resultados em Cuidados de Saúde/normas , Psicometria/normas , Transtorno do Espectro Autista/diagnóstico , Encefalopatias Metabólicas Congênitas/diagnóstico , Criança , Creatina/deficiência , Humanos , Deficiência Intelectual Ligada ao Cromossomo X/diagnóstico , Proteínas da Membrana Plasmática de Transporte de Neurotransmissores/deficiênciaRESUMO
Parent-mediated interventions are cost-effective ways to increase access to appropriate treatment services to children with autism spectrum disorder. We aimed to engage parents working as partners within rural autism identification teams to facilitate prompt initiation of autism-specific treatment services and expand the amount of treatment available to young children with autism spectrum disorder. To do this, we sought to employ a two-phase training approach: (Phase 1) train parents to fidelity in an evidence-based parent-mediated intervention (reciprocal imitation training), and (Phase 2) evaluate the extent to which parents could effectively coach other parents of newly diagnosed children to implement reciprocal imitation training with their child. We experienced several unexpected barriers to completing all aspects of the Phase 1 training workflow. This led us to pivot toward a process evaluation. We used qualitative interviewing with our partner parents to systematically identify barriers and enhance the likelihood for successful future efforts at such an approach. The lessons we learned and recommendations for others attempting this type of research are presented.
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Transtorno do Espectro Autista/terapia , Terapia Comportamental/educação , Comportamento Imitativo , Pais/educação , Transtorno do Espectro Autista/psicologia , Pré-Escolar , Educação , Humanos , Entrevistas como Assunto , Pais/psicologia , Grupo AssociadoRESUMO
The goal of this review is to advance the discussion regarding meaningful outcomes of early intervention for children with autism spectrum disorder. The rapid growth in the development and evaluation of early intervention approaches for autism spectrum disorder includes both therapist-driven and parent-mediated interventions. The majority of research on both approaches to early intervention focuses on promoting child outcomes (e.g. language acquisition) with less emphasis on family and parent outcomes (e.g. quality of life, self-efficacy). Given that parent buy-in is essential for parent-mediated interventions to be effective over time, increased attention to family outcomes that are of value to families and have the potential to be impacted positively by these interventions is needed to develop, disseminate, and sustain high-quality interventions in community settings. In this review, we draw from work on parent and family outcomes targeted in related fields (e.g. Part C early intervention, pediatric chronic illness, behavior management parent training) that we propose are particularly relevant for evaluating the impact of parent-mediated interventions in early intervention for autism spectrum disorder.
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Transtorno do Espectro Autista/terapia , Intervenção Educacional Precoce , Família/psicologia , Pais , Transtorno do Espectro Autista/psicologia , Humanos , Relações Pais-Filho , Pais/psicologiaRESUMO
Despite the expansion of early intervention approaches for young children with ASD, investigators have struggled to identify measures capable of assessing social communication change in response to these interventions. Addressing recent calls for efficient, sensitive, and reliable social communication measures, the current paper outlines the refinement and validation of the Social Communication Checklist (SCC). We discuss two small studies exploring the psychometric properties of the SCC and the SCC-R (revised Social Communication Checklist), including sensitivity to change, inter-rater reliability, and test-retest reliability, in two samples of children with ASD and one sample of typically-developing children. Results indicate this measure is reliable, sensitive to change after a brief social communication intervention, and strongly related to well-established measures of social communicative functioning.