Rethinking autism spectrum disorder assessment for children during COVID-19 and beyond.

The COVID-19 pandemic has posed unique challenges for families and caregivers, as well as for autism-focused clinicians, who are faced with providing a thorough and accurate evaluation of children's specific needs and diagnoses in the absence of in-person assessment tools. The shift to telehealth assessments has challenged clinicians to reconsider approaches and assumptions that underlie the diagnostic assessment process, and to adopt new ways of individualizing standard assessments according to family and child needs. Mandates for physical distancing have uncovered deficiencies in diagnostic practices for suspected autism and have illuminated biases that have posed obstacles preventing children and families from receiving the services that they truly need. This Commentary outlines several considerations for improving diagnostic practices as we move forward from the current pandemic and continue to strive to build an adaptable, sustainable, equitable, and family-centered system of care. LAY SUMMARY: Physical distancing and the abrupt end to in-person services for many children on the autism spectrum has forced clinicians to examine the existing challenges with autism spectrum disorder (ASD) diagnostic assessment and consider things they want to keep and things that should be changed in the years ahead. New approaches such as telehealth both alleviated and exacerbated existing disparities, and brought into stark focus the importance of equitable and timely access to family-centered care. This commentary suggests ways of improving clinical practices related to ASD assessment to continue along this path.

Assessment of Autism Symptoms From 6 to 18 Months of Age Using the Autism Observation Scale for Infants in a Prospective High-Risk Cohort.

The objectives were to characterize behavioral signs of autism spectrum disorder (ASD) in younger siblings of diagnosed children (high-risk; HR) and examine classification features of the Autism Observation Scale for Infants (AOSI). Participants (501 HR and 180 low-risk [LR]) were assessed between 6 and 18 months using the AOSI and at age 3 for ASD diagnoses. Total AOSI scores differentiated HR infants later diagnosed with ASD starting at 12 months. ROC analyses identified 12- and 18-month cutoff scores associated with 0.52 sensitivity and 0.74 specificity and 0.73 sensitivity and 0.65 specificity, respectively. Although classification accuracy does not support use as a standalone screen, the AOSI identifies features associated with ASD starting at 6 months and differentiates HR infants with ASD by 12 months.

Commentary: Embracing innovation is necessary to improve assessment and care for individuals with ASD: a reflection on Kanne and Bishop (2020).

This commentary is offered in response to Kanne and Bishop (2020) who urge caution in adopting new devices and processes for ASD assessment and advocate that that comprehensive, expert-driven, diagnostic models for ASD remain essential to maintain quality standards. While we agree that there is a critical shortage in current care, we propose that developing suites of tools and innovative approaches for screening, risk-classification, formal diagnosis, and rich assessment of abilities and challenges may be of great value to families and necessary to improve current systems of care. As well, the evaluation of 'assessment quality' should take into consideration both content and process, with a focus on achieving meaningful outcomes and optimizing family experience.

Brief Report: Preliminary Feasibility of the TEDI: A Novel Parent-Administered Telehealth Assessment for Autism Spectrum Disorder Symptoms in the First Year of Life.

Families with early concerns about infant symptoms of ASD have limited access to experienced professionals for screening and guidance. Telehealth has been used to reduce access disparities in other pediatric populations and has shown promise in parent-implemented interventions for ASD. We investigated the feasibility of a novel level-2 telehealth assessment of infants' early social communication and ASD symptoms, the Telehealth Evaluation of Development for Infants (TEDI). Parents of eleven infants aged 6-12 months were coached to administer specific semi-structured behavioral probes. Initial feasibility, reliability, and acceptability benchmarks were met. These findings suggest the feasibility of screening infants via telehealth, and are supportive of further large-scale efforts to validate this method for longitudinal monitoring of symptomatic infants in community settings.

Standards of diagnostic assessment for autism spectrum disorder.

The rising prevalence of autism spectrum disorder (ASD) has created a need to expand ASD diagnostic capacity by community-based paediatricians and other primary care providers. Although evidence suggests that some children can be definitively diagnosed by 2 years of age, many are not diagnosed until 4 to 5 years of age. Most clinical guidelines recommend multidisciplinary team involvement in the ASD diagnostic process. Although a maximal wait time of 3 to 6 months has been recommended by three recent ASD guidelines, the time from referral to a team-based ASD diagnostic evaluation commonly takes more than a year in many Canadian communities. More paediatric health care providers should be trained to diagnose less complex cases of ASD. This statement provides community-based paediatric clinicians with recommendations, tools, and resources to perform or assist in the diagnostic evaluation of ASD. It also offers guidance on referral for a comprehensive needs assessment both for treatment and intervention planning, using a flexible, multilevel approach.

Evaluation of employment-support services for adults with autism spectrum disorder.

The employment rate among persons with autism spectrum disorder has been noted as unacceptably low. Employment-support services are increasingly linked to the potential for favorable job outcomes, yet little is known about employment-support practices and the outcome of these interventions. This mixed-methods study examined employment-support resources for persons with autism spectrum disorder. An online survey was completed by 137 senior clinicians or administrators in employment-support programs in Canada. Additionally, 122 follow-up interviews were conducted with individuals with autism spectrum disorder (n = 71) and their parents/caregivers (n = 51). Findings indicate that the quality and beneficial impact of employment-support services for adults with autism spectrum disorder may be more favorably perceived by employment-support personnel than by individuals with autism spectrum disorder and their families. Furthermore, employment-support personnel were more disparaging about autism spectrum disorder vocational support capacity within their community, compared to their own programs. Individuals with autism spectrum disorder and their families seek services that support both accessing and retaining employment. Capacity-building in employment support for youth and adults with autism spectrum disorder is recommended, based on a reported insufficiency of, and a lack of evidence guiding, existing services. Program recommendations and an emerging model for integrated vocational support in autism spectrum disorder are offered.

Stakeholders' perspectives on social participation in preschool children with Autism Spectrum Disorder.

OBJECTIVE: To determine (a) the essential components of social participation for preschool children with Autism Spectrum Disorder (ASD) using stakeholders' perspectives and (b) the facilitators and barriers experienced in promoting social participation. METHODS: A mixed-methods, web-based survey utilizing the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY) taxonomy was circulated across Canada through purposeful snowball sampling. RESULTS: Frequency analysis of the combined responses of 74 stakeholders revealed the most essential components of social participation were: (a) behavior management, (b) social interactions, and (c) various types of play. Further, content analysis revealed that stakeholders used intrinsic motivation strategies and contingency management to facilitate social participation. CONCLUSION: Stakeholders reported that the purpose of social participation was to engage the child in fun, enjoyable social activities that developed relationships between the child and peers and created a sense of belonging in the community.

Stability of diagnostic assessment for autism spectrum disorder between 18 and 36 months in a high-risk cohort.

Children with autism spectrum disorder (ASD) are diagnosed, on average, around the age of 4 years. However, previous research has shown that the diagnosis can be made as early as 2 years, and that if the child is seen a year or more later, it is highly likely that the diagnosis will be confirmed. In this study, to examine whether diagnoses made as early as 18 months of age are also "stable," we followed a group of younger siblings of children with ASD (who are known to be at higher risk). We also examined whether the age of ASD diagnosis within this high-risk group was related to the severity of children's ASD symptoms or developmental delays. Participants (n = 381) were seen at three ages: 18 months, 24 months, and 3 years. ASD symptoms, general development, and adaptive functioning were assessed at each time point. Twenty-three children were diagnosed with ASD at 18 months and a total of 61 at 24 months. Of these diagnoses, 19/23 (82.6%) and 56/61 (91.8%), respectively, were confirmed independently at 3 years. However, 45 children were diagnosed with ASD at 3 years who had not been identified at earlier visits. Children diagnosed at 18 months, in comparison to those diagnosed at 24 months, had less advanced language and adaptive skills at 18 months. Children not diagnosed with ASD until 3 years, compared with those diagnosed earlier, had more advanced language and adaptive skills, and milder ASD symptoms. Autism Res 2016, 9: 790-800. © 2015 International Society for Autism Research, Wiley Periodicals, Inc.

Behavioral Pediatrics Feeding Assessment Scale in Young Children With Autism Spectrum Disorder: Psychometrics and Associations With Child and Parent Variables.

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.

Autism spectrum disorder in infancy: developmental considerations in treatment targets.

PURPOSE OF REVIEW: This review explores recent literature to prioritize aspects of development to be targeted by intervention for infants and toddlers with autism spectrum disorder (ASD). RECENT FINDINGS: Recent investigation of early development in ASD, including prospective studies of infants at increased risk (i.e., those with an affected older sibling) identifies impairments in four key developmental domains that are predictive of ASD. These domains are early attentional control, emotion regulation, social orienting/approach, and communication development. Reciprocal relationships exist among these domains, both in ASD and in typical development. Thus, these domains represent key intervention targets, informing treatment models under investigation in recent clinical trials. SUMMARY: By targeting the earliest and foundational manifestations of atypical development, we can capitalize on neural plasticity and build skills that are most likely to have scaffolding effects on development. The optimal timing and procedures of intervention remain empirical questions, but as the field moves toward earlier identification of risk, we are now poised to evaluate the impact of tailored approaches before the developmental cascade that leads to ASD is fully manifested. Consideration regarding community translation of ASD-specific interventions for infants and toddlers is also needed, with a focus on feasibility, cost-effectiveness, and sustainability.

Profile and predictors of service needs for families of children with autism spectrum disorders.

PURPOSE: Increasing demand for autism services is straining service systems. Tailoring services to best meet families' needs could improve their quality of life and decrease burden on the system. We explored overall, best, and worst met service needs, and predictors of those needs, for families of children with autism spectrum disorders. METHODS: Parents of 143 children with autism spectrum disorders (2-18 years) completed a survey including demographic and descriptive information, the Family Needs Survey-Revised, and an open-ended question about service needs. Descriptive statistics characterize the sample and determine the degree to which items were identified and met as needs. Predictors of total and unmet needs were modeled with regression or generalized linear model. Qualitative responses were thematically analyzed. RESULTS: The most frequently identified overall and unmet service needs were information on services, family support, and respite care. The funding and quality of professional support available were viewed positively. Decreased child's age and income and being an older mother predicted more total needs. Having an older child or mother, lower income, and disruptive behaviors predicted more total unmet needs, yet only disruptive behaviors predicted proportional unmet need. Child's language or intellectual abilities did not predict needs. CONCLUSION: Findings can help professionals, funders, and policy-makers tailor services to best meet families' needs.

Attrition and the management of pediatric obesity: an integrative review.

BACKGROUND: A key challenge in managing pediatric obesity is the high degree of program attrition, which can reduce therapeutic benefits and contribute to inefficient health services delivery. Our aim was to document and characterize predictors of, and reasons for, attrition in pediatric obesity management. METHODS: We searched literature published until January 2014 in five databases (CINAHL, EMBASE, MEDLINE, PsycINFO, and Scopus). Articles were included if they were English, included participants 0-18 years of age, focused on pediatric obesity management, incorporated lifestyle and behavioral changes without pharmacotherapy, provided attrition data, and reported information about predictors of, and/or reasons for, attrition from family-based interventions provided in research or clinical settings. Twenty-three articles (n=20 quantitative; n=2 qualitative; n=1 mixed methods) met our inclusion criteria. Clarity of study aims, objectives, methods, and data analysis were appraised using Bowling's checklist. RESULTS: Attrition varied according to definition (minimum to maximum, 4-83%; median, 37%). There were few consistent predictors of attrition between studies, although dropout was higher among US-based families receiving public health insurance. Older children were also more likely to discontinue care, but sex and baseline weight status did not predict attrition. The most commonly reported reasons for attrition were logistical barriers and programs not meeting families' needs. CONCLUSIONS: Developing and evaluating strategies designed to minimize the risk of attrition, especially among families who receive public health insurance and older boys and girls, are needed to optimize the effectiveness of pediatric obesity management.

Brief report: assessment of early sensory processing in infants at high-risk of autism spectrum disorder.

This study assessed sensory processing differences between 24-month infants at high-risk of autism spectrum disorder (ASD), each with an older sibling with ASD, and low-risk infants with no family history of ASD. Sensory processing differences were assessed using the Infant/Toddler Sensory Profile, a parent-reported measure. Groups were compared based on 3-year outcomes: (a) high-risk infants subsequently diagnosed with ASD; (b) high-risk infants without an ASD diagnosis; and (c) low-risk infants without an ASD diagnosis. Analyses showed that high-risk infants diagnosed with ASD have more difficulty with auditory processing (i.e., responses to auditory stimuli) and lower registration (i.e., lacking sensation awareness) compared to controls. Thus, behavioral responses to sensory input represent early risk markers of ASD, particularly in high-risk infants.

Clinical assessment and management of toddlers with suspected autism spectrum disorder: insights from studies of high-risk infants.

With increased public awareness of the early signs and recent American Academy of Pediatrics recommendations that all 18- and 24-month-olds be screened for autism spectrum disorders, there is an increasing need for diagnostic assessment of very young children. However, unique challenges exist in applying current diagnostic guidelines for autism spectrum disorders to children under the age of 2 years. In this article, we address challenges related to early detection, diagnosis, and treatment of autism spectrum disorders in this age group. We provide a comprehensive review of findings from recent studies on the early development of children with autism spectrum disorders, summarizing current knowledge on early signs of autism spectrum disorders, the screening properties of early detection tools, and current best practice for diagnostic assessment of autism spectrum disorders before 2 years of age. We also outline principles of effective intervention for children under the age of 2 with suspected/confirmed autism spectrum disorders. It is hoped that ongoing studies will provide an even stronger foundation for evidence-based diagnostic and intervention approaches for this critically important age group.