Karla Ausderau PhD, OTR/L, FAOTA

Objectives: High school-based parenting programs have been identified as a way to support teen mothers as they manage their complex roles as parent and student. The purpose of this study was to describe components within a high school-based parenting program that support the overall success of the mother and child through the perspectives of current students, program alumni, and staff.

Methods: We conducted a phenomenological study using semi-structured interviews with current students (n = 8) and program alumni (n = 11) from one high school-based parenting program and staff from seven high school-based parenting programs (n = 12). Thematic analysis was used to identify essential program supports within and between the three different groups. Member checking was completed to verify that the final themes represented the experiences shared in the interviews.

Results: Four themes were identified supporting the success of teen mothers in high school-based parenting programs: Things That Make the Program Run, Basic Needs, Classroom Supports, and Connections Outward. Themes were found across all participants with comparison between groups revealing nuances in their experience and perception of supports.

Conclusions for practice: High school-based parenting programs need to move beyond providing traditional supports to focus on facilitating social connections, ensuring the basic needs are met, and utilizing non-traditional learning strategies. Programs should name and measure strategies used to measure program effectiveness to understand the academic, health, and well-being implications for both parent and child short- and long-term.

Keywords: Expectant and parenting teens, High school parenting program, School-based support, Social support.

Feeding challenges for autistic children are heterogeneous, often including aversions to various sensory food properties, and unique eating patterns that are different from other family members. This pilot study aimed to evaluate the effectiveness of the Engaged Eaters Program in achieving mealtime goals for families with autistic children who have feeding challenges. Using a quasi-experimental, one-group pre-posttest design, twenty-nine caregiver-child dyads participated in the Engaged Eaters Program: a 6-month caregiver-mediated feeding intervention (caregiver coaching, direct intervention, and caregiver training) delivered in-home (n = 13) or via telehealth (n = 16). Goal Attainment Scaling (GAS) T-scores were calculated to evaluate the effectiveness of the intervention. Caregiver-child dyads achieved significantly higher outcomes than expected based on standardized GAS T-scores, M = 58 (SD=13), t(28) = 3, p = .002 overall. No significant difference was detected between the in-home delivery method, 61 (SD = 12), and the telehealth delivery method, 55 (SD = 14), t(27) = 1, p = 0.223. The study findings can inform future efficacy testing and provide initial evidence for the caregiver-mediated intervention in improving eating skills and mealtime behaviors in autistic children, utilizing multiple delivery methods. The results support the use of family-centered interventions in ecologically valid contexts for addressing mealtime challenges.

Keywords. Autism, Eating, Mealtime, Family, Caregiver, Intervention

Aims. This project aimed to (1) Describe feeding self-help skills in autistic children with feeding challenges and (2) Identify the relationships among feeding self-help skills, feeding challenge severity, family mealtime factors, and adaptive behavior.

Methods. This study used data from a cross-sectional national survey of 358 caregivers of autistic children (ages 2-12 years) with feeding challenges, recruited through a national research registry. Data were captured using validated caregiver-report measures. Descriptive statistics were completed to characterize feeding self-help skills and additional variables within the sample. Pearson's R correlations were run to investigate relationships among variables.

Results. Feeding self-help skills, feeding challenge severity, and adaptive behavior scores were widely heterogeneous. Overall, children in the study required higher levels of support from caregivers to participate in feeding and had lower adaptive behavior than expected for their age. Significant Pearson r correlations ranging from 0.11 to 0.60 were observed between feeding self-help skills, feeding challenge severity, family mealtime factors, and adaptive behavior.

Conclusions. Feeding self-help skills and adaptive behavior are essential to evaluate in autistic children with feeding challenges. Future research should explore component skills, (e.g. use of utensils) in addition to behavior and sensory components of feeding to inform child-centered evaluation and intervention.

Keywords. Adaptive behavior, autism, family mealtime, feeding challenges, feeding self-help skills

Prenatal Zika virus (ZIKV) exposure can result in outcomes ranging from severe birth defects to subtle developmental delays, yet the underlying mechanisms remain unclear. Using a translational rhesus macaque model, we assess visual, auditory, and neurodevelopmental outcomes through 12 months of age following first-trimester ZIKV inoculation. Pregnant macaques, either flavivirus-naive or with prior dengue virus (DENV) exposure, are inoculated with Asian or African ZIKV lineages. Maternal viremia duration, placental viral burden, and neutralizing antibody titers vary but are not associated with developmental outcomes. At 12 months, ZIKV-exposed infants exhibit altered maternal attachment behaviors and reduced inhibition toward novel sensory stimuli. Visual evoked potentials are impaired at 3 months but normalize by 12 months; hearing loss is more frequent but not statistically significant. These outcomes are driven by ZIKV exposure itself, independent of maternal infection characteristics. Our findings highlight the limitations of maternal biomarkers in risk prediction and support incorporating infant-focused developmental outcomes in studies of maternal interventions.

Keywords. Viral pathogenesis, Virus–host interactions

Purpose. Group exercise provides many benefits, yet adults with intellectual and developmental disabilities are often excluded from participation. As group exercise instructors play a significant role in GE participation, this study sought to gain a better understanding of their perceptions toward the participation of adults with intellectual and developmental disabilities to support the development of more accessible and inclusive community group exercise opportunities.

Methods. Semi-structured interviews were completed with twenty participants aged 21-62 who were actively teaching group exercise classes. Participants shared their perceptions of intellectual and developmental disability concerning group exercise participation. Interviews were audio-recorded, transcribed, and analyzed using thematic analysis.

Results. Three themes were derived from the interviews: Beliefs surrounding modifications, perceived instructor roles, and self-efficacy in teaching adults with intellectual and developmental disabilities.

Conclusions. Instructors emphasized the importance of modifications but expressed mixed self-efficacy in applying these modifications effectively. Further exploration is needed surrounding instructor self-efficacy.

Keywords. Intellectual and developmental disability, group exercise, instructor perceptions, qualitative, teaching

Feeding is a multifaceted process that is frequently disrupted across pediatric populations, in particular among children with medical, developmental, or behavioral challenges. Occupational therapy practitioners possess unique expertise in providing comprehensive evaluations and interventions for feeding and eating skills, child regulation and behavior, mealtime routines, and family-centered goals during this essential activity of daily living. This State of the Science review synthesizes the current state of evaluation, intervention, and policy related to pediatric feeding within occupational therapy; specifically, we identify opportunities for expanded assessment development, intervention research, clinical research partnerships, and policy advocacy. We emphasize the importance of occupational therapy practitioners being part of multidisciplinary teams, consistently being recognized as qualified providers of feeding services, and being reimbursed for service provision across the United States related to pediatric feeding.

Keywords. Child, Feeding Behavior, Health Policy, Occupational Therapy

Autism core characteristics and sensory processing differences can create significant barriers to families accessing and children receiving emergency healthcare in the heightened sensory and fast-paced environment of emergency departments, particularly in rural communities. This project aimed to use a community-collaborative approach to develop and disseminate educational materials, recommend emergency department environmental modifications, and implement sensory regulation supports to enhance the capacity of healthcare providers and staff in supporting autistic children within rural emergency department settings. An interdisciplinary community-academic partnership team including researchers, graduate students, parents, an autistic focused organization, healthcare providers, and hospital staff used an iterative process to co-create materials. The collaboration yielded a multi-faceted toolkit with high acceptability from health care team members. The toolkit products included educational materials, environmental adaptations, and sensory-friendly tools. Future research should explore toolkit modifications to allow for implementation across unique emergency department contexts and assess healthcare related outcomes to measure toolkit effectiveness.

Keywords. Autism, Sensory processing, Emergency department, Accessibility, Health Services Accessibility

Ensuring that research participants accurately reflect patient populations is critical for the equitable distribution of the benefits and burdens of studies; however, many groups experiencing health disparities remain underrepresented in research. This study interviewed research team members (n = 25) interested in inclusive recruitment to understand their perspectives on engaging adults with intellectual and developmental disabilities in general population research. Team-based thematic analysis revealed barriers to the inclusion of adults with intellectual and developmental disabilities including 1) use of direct and indirect exclusionary practices, 2) lack of knowledge and skills, 3) reliance on ad hoc accommodations, 4) perceptions that including adults with intellectual disabilities in research lacks scientific value, and 5) beliefs that people with intellectual and developmental disabilities are not able or willing to participate. However, while team members acknowledged a lack of knowledge and skills to include people with intellectual and developmental disabilities, there was a strong interest in learning.

Keywords. Recruitment science, adults with intellectual and developmental disabilities, health equity, patient engagement, research ethics

Quality of life (QoL) is important for everyone and has been identified as a priority for autistic people. However, studies typically focus on caregiver-proxy-reported QoL and its related individual characteristics, even though self- and caregiver-proxy-reported QoL may differ in autistic children. In 74 autistic children (5.04-10.99 years old, intelligence quotient [IQ] 47-141), we sought to determine the level of agreement between self- and caregiver-proxy-reported QoL and determine if self- and caregiver-proxy-reported QoL are differently related to personal characteristics such as age, IQ, autism features, attention-deficit/hyperactivity disorder (ADHD) features, sleep difficulties, and sensory features. Findings suggested poor inter-rater agreement (ICC = 0.16) between self- and caregiver-proxy-reported QoL. Across both self- and caregiver-proxy reports, sensory features and sleep difficulties related to QoL, but age and IQ did not. We also found an interaction effect of reporter on the relation between QoL and both autism and ADHD features, with these associations driven by caregiver-proxy-reported QoL. These findings emphasize the importance of measuring both self- and caregiver-proxy-reported QoL to provide complementary perspectives. Moreover, these results underscore the importance of understanding a child's sensory features and sleep difficulties, as these two areas were similarly related to both self- and caregiver-proxy-reported QoL.

Keywords. attention-deficit hyperactivity disorder, autism, children, quality of life, sensory, sleep

Sensory processing differences are prevalent among autistic children impacting their participation in daily activities. Sensory subtypes provide a useful approach to understand these differences, as sensory response patterns often co-occur. The purpose of this paper is to apply existing sensory subtype methodology to examine the four sensory subtypes' association with child outcome measures. Autistic children (n = 118) ages 6-18 years old were grouped into four sensory subtypes of mild, sensitive-distressed, attenuated-preoccupied, and extreme-mixed. This study examined associations among the four sensory subtypes and motor skills, core autism features, and adaptive behaviors. Most children were categorized into the mild (n = 53) and sensitive-distressed (n = 45) subtype with very few children falling in the attenuated-preoccupied (n = 9) and extreme-mixed subtype (n = 11). The four subtypes had group differences identified for motor skills, core autism features, and adaptive behaviors. The mild and attenuated-preoccupied had higher motor skills compared to the sensitive-distressed and extreme-mixed subtype. The extreme-mixed subtype had more core autism features, and lower adaptive behavior compared to the mild subtype. Sensory subtypes exhibit differential associations to child outcome measures for autistic children ages 6-18 years old. Understanding these relationships may provide an opportunity for earlier, targeted interventions to address the role sensory differences play in daily activities.

Keywords. Adaptive behaviors, autism features, motor skills, sensory patterns, sensory subtypes

Importance. Comprehensive and validated assessments for use in clinical and research settings are needed to identify and address the complexities of feeding challenges for autistic children.

Objective. To establish the convergent validity of the Feeding and Eating in AutiSm Together (FEAST) questionnaire compared with two other validated parent-reported feeding assessments with similar constructs, the Behavior and Mealtime Behavior Index of Children (BAMBIC) and Screening Tool of Feeding Problems applied to Children (STEP-CHILD).

Method. Data from the Survey for Characterization of Feeding Challenges in Autistic Children-US (N = 349) were used to determine the convergence between the FEAST, BAMBIC, and STEP-CHILD using Pearson's correlation tests.

Design. Cross-sectional validation study.

Results. The FEAST total score and FEAST Behavior subscale were found to have moderate, positive correlations with comparison measures, supporting the convergent validity of the FEAST. Relationships between the remaining FEAST subscales and BAMBIC and STEP-CHILD subscales were primarily weak or nonsignificant, demonstrating that their respective scores are capturing distinct factors related to feeding. One expected exception was a moderate positive correlation between the FEAST Oral Motor subscale and the STEP-CHILD Chewing Problems subscale.

Conclusions and relevance. The FEAST demonstrates adequate convergent validity the BAMBIC and STEP-CHILD. The weak correlations of the FEAST Gastrointestinal Health, Sensory Processing, and Oral Motor Skills subscales provide evidence that FEAST may capture additional information about the factors that influence feeding challenges. The FEAST provides clinicians and researchers with a new comprehensive assessment of feeding challenges for autistic children.

[MeSH terms substituted for keywords — no author-supplied keywords listed on PubMed.]

Keywords. Autistic Disorder, Child, Child Preschool, Cross-Sectional Studies, Feeding Behavior, Female, Humans, Male, Reproducibility of Results, Surveys and Questionnaires

Prenatal and postnatal Zika virus (ZIKV) exposure can result in a constellation of developmental deficits in human infants that present during early childhood. Translational rhesus macaque models have been developed to interrogate these deficits. Here, we summarize and interpret the developmental findings from rhesus macaque studies of prenatal or postnatal ZIKV exposure. We looked for potential biomarkers that could be used to identify infants at risk for developmental deficits. Visual orientation and motor deficits were the most common developmental deficits across the studies. We identified a potential association between prolonged maternal RNAemia and worse infant developmental outcomes in prenatal exposure studies. Therefore, longitudinal screening of maternal blood for ZIKV RNA may help identify human infants at risk for visual orientation and motor deficits in early childhood; however, the diversity of research protocols across the groups made it challenging to make definitive associations.

Keywords. Zika virus, behavior, congenital infection, neurodevelopment, nonhuman primate model, macaca, prenatal care, zika virus

Zika virus, a mosquito-transmitted orthoflavivirus, has become a pathogen of global health concern ever since the virus caused an epidemic in Brazil in 2015 associated with approximately 700 000 laboratory-confirmed cases of congenital microcephaly. The subsequent spread of the epidemic in 2016 resulted in a wide spectrum of congenital neurological, ophthalmological, and developmental abnormalities across the Americas, Africa, and Asia. In this context, non-human primate models have become essential tools for Zika virus research to understand the pathogenesis of congenital brain injury and perinatal complications and for developing and testing medical countermeasures such as vaccines, diagnostics, and therapeutics. Fetal brain injury has been observed across various non-human primate species and is influenced by factors such as the Zika virus strain, gestational age at inoculation, and inoculation dose and route. Miscarriages are also seen as common outcomes of first trimester Zika virus infections. This Series paper reviews the diverse non-human primate models currently used for Zika virus research to mitigate the public health effects of future Zika virus epidemics.

[MeSH terms substituted for keywords — no author-supplied keywords listed on PubMed.]

Keywords. Animals, Disease Models Animal, Female, Humans, Microcephaly, Pregnancy, Primates, Zika Virus Infection, Zika Virus

As the COVID-19 pandemic closed doors and narrowed connections, people with intellectual and developmental disabilities faced heightened isolation and vulnerability—but they also discovered new ways to be seen, heard, and connected. Through their own lenses, these photographs capture moments of strength, loss, insight, and truth. They challenge us to foster inclusion in our everyday lives and to prepare for the future so that no one is left behind in times of crisis. The Pandemic Cancelled It, and They Never Brought It Back: Stories of Loss, Change, and Hope presents a deeply human look at how the daily lives and participation of eighteen adults with intellectual and developmental disabilities living in Wisconsin were impacted during the pandemic—one photograph, one story at a time.

The definitive, in-depth guide to Autism Spectrum Disorder (ASD), updated with new DSM-V and ICD-11 definitions and many new chapters. Since the original edition was first published more than a quarter of a century ago, The Handbook of Autism and Pervasive Developmental Disorders has been the most influential reference work in the field of autism and related conditions and is now regarded as the definitive, in-depth guide to Autism Spectrum Disorder (ASD). Along with providing practical clinical advice including the role of psychopharmacology in treatment, the Handbook codifies the ever-expanding current body of research throughout both volumes, offering a wealth of information on the epidemiology of autism and the genetic, environmental, biochemical, social, and neuropathological aspects of the disorder.

Background. Autistic children experience high rates of feeding challenges, negatively affecting their health, eating patterns, and social eating experiences. The Feeding and Eating in AutiSm Together; FEAST, a caregiver-report questionnaire, was developed to characterize feeding challenges in autistic children ages 2 to 12 years. The purpose of this study is to determine the construct validity of the FEAST assessment using a large national sample of autistic children.

Method. A large national sample (N = 396) of caregivers completed the online survey. An ordinal confirmatory factor model using a robust weighted least squares approach validated the four predicted groupings of feeding challenges (sensory processing; behavior; oral motor skills; and gastrointestinal) with generally strong loadings onto the four distinct factors.

Results. Model fit statistics indicated good model fit (Robust Root Mean Square Error of Approximation = .080, Robust Comparative Fit Index = .909, Robust Tucker-Lewis Index = .901). Findings provide preliminary confirmation of the construct validity of the FEAST assessment to characterize feeding difficulties for autistic children ages 2–12. Small to medium correlations between all factors indicate items successfully targeted four unique areas of feeding challenge. For all factors, the largest correlation was with behavior.

Conclusion. Assessments developed to address the complex feeding and mealtime challenges for autistic children are essential to identify and integrate the most appropriate intervention approaches. FEAST offers researchers and clinicians with a comprehensive and psychometrically sound assessment tool to address autistic children's unique feeding challenges.

Keywords. Autism spectrum disorder, feeding, factor analysis, assessment, sensory, oral motor, gastrointestinal, behavior

Importance. At least 10 million people in the United States have an intellectual and/or developmental disability (IDD). People with IDD experience considerably higher rates of poor overall health, chronic conditions including diabetes, mental health challenges, maternal mortality, and preventable deaths. This Special Communication proposes national goals based on a community-led consensus model that advances priority health outcomes for people with IDD and their caregivers/partners and identifies critical policy opportunities and challenges in achieving these goals. A community-led consensus agenda offers a foundation for focusing research, improving data collection and quality measurement, enhancing coverage and payment for services, and investing in a prepared clinical workforce and infrastructure in ways that align with lived experiences and perspectives of community members.

Observations. People with IDD prioritize holistic health outcomes and tailored supports and services, driven by personalized health goals, which shift over their life course. Caregivers/partners need support for their own well-being, and easy access to resources to optimize how they support loved ones with IDD. Development of an adequately prepared clinical workforce to serve people with IDD requires national and regional policy changes that incentivize and structure training and continuing education. Ensuring effective and high-value coverage, payment, and clinical decisions requires investments in new data repositories and data-sharing infrastructure, shared learning across public and private payers, and development of new technologies and tools to empower people with IDD to actively participate in their own health care.

Conclusions and Relevance. Consensus health priorities identified in this project and centered on IDD community members' perspectives are generalizable to many other patient populations. Public and private payers and regulators setting standards for health information technology have an opportunity to promote clinical data collection that focuses on individuals' needs, quality measurement that emphasizes person-centered goals rather than primarily clinical guidelines, and direct involvement of community members in the design of payment policies. Clinical education leaders, accrediting bodies, and investors/entrepreneurs have an opportunity to innovate a better prepared health care workforce and shared data infrastructure to support value-based care programs.

Background. People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles.

Objectives. We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities.

Methods. We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility.

Results. The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher.

Conclusions. Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

Keywords. Accessibility, Community-based participatory research, Ethics, Inclusive research, Intellectual and developmental disability

Individuals with intellectual and developmental disabilities (IDD) have unique and complex health care needs that require health care access. Barriers, such as decreased health literacy and a lack of experienced physicians working with this population, make access to inclusive health care increasingly difficult. Therefore, it is important for occupational therapists to intentionally create opportunities to improve healthcare access and utilization for this population. This paper describes the collaborative health narrative development process as well as the inclusion of three examples created by co-authors with intellectual or developmental disability.

Objective. To evaluate caregiver outcomes (stress, self-efficacy, and positive feeding responses and confidence) after participation in the Engaged Eaters Program.

Design. Quasi-experimental pretest–posttest design.

Setting. In-home via telehealth.

Participants. Fourteen primary caregivers of an autistic child (ages 2–7 yr) with feeding challenges.

Intervention. The Engaged Eaters Program–Telehealth, a caregiver-mediated 6-mo in-home telehealth feeding intervention for autistic children ages 2 to 7 yr that included 24 intervention visits, eight caregiver training modules, and consultation with a dietician.

Outcomes and Measures. Relationships between child feeding challenge severity and caregiver outcomes and individual differences in caregivers’ intervention responses were evaluated. We assessed caregivers’ stress (Parenting Stress Index, Fourth Edition Short Form), self-efficacy (Parent Sense of Competence Scale), Positive Feeding Responses and Confidence (PFRC; composite score of items from other assessments), and individual intervention response using pre- to postintervention change in scores.

Results. Exploration of individual differences revealed that only caregivers with intake PFRC scores below the mean made significant improvements by the end of the intervention. No significant group-level changes were identified for stress, self-efficacy, or PFRC. Feeding challenge severity was not significantly related to caregiver outcomes.

Conclusions and Relevance. The results emphasize the importance of considering baseline practices, efficacy, and caregiver confidence when engaging caregivers in intervention. Future research should explore the nuanced relationship between caregiver outcomes and child characteristics.

Plain-Language Summary. Caregivers are essential partners with feeding interventions that build on family routines and practices. When working with caregivers, occupational therapists should consider caregivers’ readiness for and responses to an intervention because intervention practices may differentially affect caregivers’ parenting practices, confidence, and self-efficacy. Caregivers’ responses may also affect the overall effectiveness of a caregiver-mediated intervention.

Positionality Statement. The term caregiver-mediated is used throughout this article in place of parent-mediated to be inclusive of all types of caregivers.

Attention-deficit/hyperactivity disorder (ADHD) commonly co-occurs in autistic children. However, additional research is needed to explore the differences in motor skills and sensory features in autistic children with and without ADHD, as well as the impacts of these factors on daily living skills (DLS). This observational study sought to fill this gap with 67 autistic children (6.14-10.84 years-old), 43 of whom had ADHD. Autistic children with ADHD demonstrated higher sensory features and lower motor skills than autistic children without ADHD. In examining autism and ADHD features dimensionally, we found that overall sensory features, seeking, and hyporesponsiveness were driven by both autism and ADHD features, whereas motor skills, enhanced perception, and hyperresponsiveness were driven by only autism features. Additionally, in using these dimensional variables of autism and ADHD features, we found that differences in motor skills, sensory and autism features, but not ADHD features, impact DLS of autistic children, with autism features and motor skills being the strongest individual predictors of DLS. Together, these results demonstrate the uniqueness of motor skills and sensory features in autistic children with and without ADHD, as well as how autism features, sensory features, and motor skills contribute to DLS, emphasizing the importance of a comprehensive understanding of each individual and complexities of human development when supporting autistic children.

Keywords. Attention-deficit hyperactivity disorder, Autism spectrum disorder, Daily living skills, Motor skills, Sensory features

The purpose of this study was to understand caregivers' experience of participating in a caregiver-mediated in-home feeding intervention, the Engaged Eaters Program, for their young autistic child. This qualitative study utilized a thematic approach to analyze post-intervention semi-structured interviews with thirteen mothers of autistic children between the ages of 2 to 7 years after they participated in the intervention. Interview questions focused on the child and family experience, what worked well, what could be improved, and how the intervention integrated into family routines. Four major themes were identified: In-Home Intervention, Parent Skill and Knowledge, Increased Social Participation, and Parent Responsibilities and Challenges. Sub-themes provided descriptions of learning practical tools to support their child, increasing self-efficacy, and impacts on family life. Mothers described an increase in tangible skills that were easily practiced in the home environment that improved their confidence and self-efficacy in feeding their children. They also described how participation did require more work and time commitment for them beyond their regular responsibilities. The caregiver experience is essential to understand for intervention effectiveness while simultaneously addressing child, caregiver, and family needs. By focusing on the mothers' experiences, individualized needs, and self-efficacy, we were able to better understand how integrating an intervention into the family context and daily routines may be beneficial for the whole family.

Keywords. Autistic Disorder, Caregivers, Child, Feeding and Eating, Mother

Feeding challenges are common for autistic children. Currently, research and intervention for feeding challenges focuses on single factors (e.g. behavior or sensory). Research is needed to understand the complexity of feeding challenges. This study provides a comprehensive description of feeding challenges. Furthermore, this study identifies what factors predict the severity and type of feeding challenges experienced by autistic children. Using the Survey for Characterization of Feeding Challenges in Autistic Children-United States, 427 caregivers of autistic children provided information about their child's feeding challenges. Children were between the ages of 2 and 12 with an average age of 8.42 years. Children in the study had a wide variety of feeding difficulties including challenges in early childhood, sensory challenges, difficulty with family mealtime, and variable self-help skills. On average children's feeding challenges were present prior to their autism diagnosis. We found that children who had early feeding challenges had more severe feeding challenges in later childhood. Also, specific early feeding challenges predicted the types of feeding challenges children would have later in childhood. For example, children who had difficulty transitioning to table foods and who continued to restrict their diet over time were more likely to have sensory-based feeding challenges. Results from this study show how feeding challenges present in a wide variety of ways for autistic children. The findings also highlight the importance of screening for feeding challenges in early childhood and collaborating with families to understand individualized feeding challenge experiences. These results could be used to inform evaluation and intervention for feeding.

Keywords. autism spectrum disorders, interventions—psychosocial/behavioral, nutrition/feeding, screening

Background. Children with prenatal Zika virus exposure are at an increased risk of developing neurodevelopmental deficits in early childhood. Travel to Zika virus-endemic regions during pregnancy elevates the risk of offspring developing complications. This study examined developmental outcomes of children from Wisconsin with maternal or partner travel history to Zika virus-endemic regions during pregnancy compared to gestation and age-matched controls.

Methods. A retrospective chart review compared outcomes of cases (n = 181) with prenatal travel history to Zika virus-endemic regions to gestational and birth date-matched controls (n = 172) up to 7 years old. We reported Zika virus testing and travel, birth outcomes, standardized developmental screening tests, and specialist referral rates.

Results. There were no differences in referral rates and standardized developmental screening test outcomes, but cases tended to have more referrals for early intervention compared to the controls (P = 0.059). One Zika virus-positive case was identified with complications surrounding birth, and 2.2% of children had documentation in their health records noting potential Zika virus exposure. Regardless of groups, limited referrals were made at 9 (0%), 18 (60%), and 24 (40%) months based on Ages and Stages Questionnaire-version 3 (ASQ-3) recommendations.

Conclusions. This study found similar developmental screening outcomes and referral rates between groups. Longitudinal care of children whose mothers traveled to Zika virus-endemic regions could be improved with better documentation of prenatal Zika virus exposure in the child's medical record, use of standardized developmental screening tools at every recommended well-child visit, and referral when developmental screening test scores are low.

Keywords. Zika virus, prenatal exposure, neurodevelopmental screening, case-control study, Wisconsin

Background. Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, leisure, and routine daily care during COVID-19.

Objective. The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic.

Methods. A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n=331) and during (2021; n=206) the pandemic.

Results. Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M=2.99 vs. 3.14, p=.028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre- vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre- vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16% experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r=.15, p=.036), level of agreement that the vaccine is safe (r=.17, p=.024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r=.25, p=.001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r=.15, p=.048).

Conclusions. Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.

Keywords. quality of life, service, satisfaction, COVID-19, self-report

Background. Differences in responding to sensory stimuli, including sensory hyperreactivity (HYPER), hyporeactivity (HYPO), and sensory seeking (SEEK) have been observed in autistic individuals across sensory modalities, but few studies have examined the structure of these "supra-modal" traits in the autistic population.

Methods. Leveraging a combined sample of 3868 autistic youth drawn from 12 distinct data sources (ages 3–18 years and representing the full range of cognitive ability), the current study used modern psychometric and meta-analytic techniques to interrogate the latent structure and correlates of caregiver-reported HYPER, HYPO, and SEEK within and across sensory modalities. Bifactor statistical indices were used to both evaluate the strength of a "general response pattern" factor for each supra-modal construct and determine the added value of "modality-specific response pattern" scores (e.g., Visual HYPER). Bayesian random-effects integrative data analysis models were used to examine the clinical and demographic correlates of all interpretable HYPER, HYPO, and SEEK (sub)constructs.

Results. All modality-specific HYPER subconstructs could be reliably and validly measured, whereas certain modality-specific HYPO and SEEK subconstructs were psychometrically inadequate when measured using existing items. Bifactor analyses supported the validity of a supra-modal HYPER construct (ωH = .800) but not a supra-modal HYPO construct (ωH = .653), and supra-modal SEEK models suggested a more limited version of the construct that excluded some sensory modalities (ωH = .800; 4/7 modalities). Modality-specific subscales demonstrated significant added value for all response patterns. Meta-analytic correlations varied by construct, although sensory features tended to correlate most with other domains of core autism features and co-occurring psychiatric symptoms (with general HYPER and speech HYPO demonstrating the largest numbers of practically significant correlations).

Limitations. Conclusions may not be generalizable beyond the specific pool of items used in the current study, which was limited to caregiver report of observable behaviors and excluded multisensory items that reflect many "real-world" sensory experiences.

Conclusion. Of the three sensory response patterns, only HYPER demonstrated sufficient evidence for valid interpretation at the supra-modal level, whereas supra-modal HYPO/SEEK constructs demonstrated substantial psychometric limitations. For clinicians and researchers seeking to characterize sensory reactivity in autism, modality-specific response pattern scores may represent viable alternatives that overcome many of these limitations.

Eating and mealtime challenges are common in autistic children, yet intervention access is limited. Telehealth may provide opportunities to address this gap and increase access for underserved families. This study examined the occupational therapy practitioner's perceptions of transitioning from a caregiver-mediated, in-home eating, and mealtime intervention for autistic children to telehealth owing to COVID-19 while considering the impact on accessibility, challenges, and benefits. Family characteristics were compared between groups. Thematic analysis of semi-structured interviews explored practitioners' experiences of telehealth. Statistical findings and themes were directly compared and contrasted. The following three themes emerged: Intervention Adaptations, Challenges for Interventionists, and Benefits of Telehealth. The differences in the families' geographic location were identified. Themes and family characteristic differences supported increased intervention accessibility for the telehealth group. This study provides preliminary evidence that telehealth can increase access to specialized services. There are benefits and challenges to implementing telehealth with families and autistic children.

Importance. Limited research has elucidated factors predicting occupational therapy–specific service utilization by children with autism. Such research is needed to inform reasons for receipt of services.

Objective. To examine factors associated with occupational therapy service utilization by children with autism. We hypothesized that elevated sensory hyperresponsiveness; greater sensory interests, repetitions, and seeking; and lower adaptive behavior would predict more service utilization.

Design. Analysis of extant data from a prospective, longitudinal survey study about autism symptom severity, adaptive behavior, sensory features, and demographic and service utilization information of children with autism ages 3 to 13 yr.

Setting. Online parent survey regarding child behaviors during daily activities and contexts.

Participants. 892 parents of children with autism from 50 U.S. states.

Outcomes and Measures. We used scores on the Vineland Adaptive Behavior Scale–Second Edition, the Social Responsiveness Scale, and the Sensory Experiences Questionnaire Version 3.0 and responses to a demographic questionnaire. We formulated hypotheses after data collection but before analysis.

Results. Predictors of higher occupational therapy service utilization were lower enhanced perception; lower adaptive behavior; elevated sensory interests, repetitions, and seeking behaviors; younger child age; and higher household income.

Conclusion and Relevance. Results partially support our hypotheses. Sensory interests, repetitions, and seeking behavior predicted occupational therapy service utilization, whereas other sensory response patterns did not, suggesting a possible referral bias for certain sensory response patterns. Occupational therapy practitioners can educate parents and teachers about the scope of practice, which includes addressing sensory features beyond sensory interests, repetitions, and seeking behaviors.

Keywords. autistic disorder, child, adaptive behavior

In the 2016 Zika virus (ZIKV) pandemic, a previously unrecognized risk of birth defects surfaced in babies whose mothers were infected with Asian-lineage ZIKV during pregnancy. Less is known about the impacts of gestational African-lineage ZIKV infections. Given high human immunodeficiency virus (HIV) burdens in regions where African-lineage ZIKV circulates, we evaluated whether pregnant rhesus macaques infected with simian immunodeficiency virus (SIV) have a higher risk of African-lineage ZIKV-associated birth defects. Remarkably, in both SIV+ and SIV- animals, ZIKV infection early in the first trimester caused a high incidence (78%) of spontaneous pregnancy loss within 20 days. These findings suggest a significant risk for early pregnancy loss associated with African-lineage ZIKV infection and provide the first consistent ZIKV-associated phenotype in macaques for testing medical countermeasures.

Background. Understanding gait development is essential for identifying motor impairments in neurodevelopmental disorders. Defining typical gait development in a rhesus macaque model is critical prior to characterizing abnormal gait. The goal of this study was to 1) explore the feasibility of using the Noldus Catwalk to assess gait in infant rhesus macaques and 2) provide preliminary normative data of gait development during the first month of life. NEW

Method. The Noldus Catwalk was used to assess gait speed, dynamic and static paw measurements, and interlimb coordination in twelve infant rhesus macaques at 14, 21, and 28 days of age. All macaque runs were labeled as a diagonal or non-diagonal walking pattern.

Results. Infant rhesus macaques primarily used a diagonal (mature) walking pattern as early as 14 days of life. Ten infant rhesus macaques (83.3%) were able to successfully walk across the Noldus Catwalk at 28 days of life. Limited differences in gait parameters were observed between timepoints because of the variability within the group at 14, 21, and 28 days.

Comparison with Existing Methods. No prior gait analysis system has been used to provide objective quantification of gait parameters for infant macaques.

Conclusions. The Catwalk system can be utilized to quantify gait in infant rhesus macaques less than 28 days old. Future applications to infant rhesus macaques could provide a better understanding of gait development and early differences within various neurodevelopmental disorders.

Depression and anxiety are some of the most prevalent and debilitating mental health conditions in humans. They can present on their own or as co-morbidities with other disorders. Like humans, non-human primates (NHPs) can develop depression- and anxiety-like signs. Here, we first define human depression and anxiety, examine equivalent species-specific behaviors in NHPs, and consider models and current methods to identify and evaluate these behaviors. We also discuss knowledge gaps, as well as the importance of evaluating the co-occurrence of depression- and anxiety-like behaviors in animal models of human disease. Lastly, we consider ethical challenges in depression and anxiety research on NHPs in order to ultimately advance the understanding and the personalized treatment of these disorders.

Background. Elevated or reduced responses to sensory stimuli, known as sensory features, are common in autistic individuals and often impact quality of life. Little is known about the neurobiological basis of sensory features in autistic children. However, the brainstem may offer critical insights as it has been associated with both basic sensory processing and core features of autism.

Methods. Diffusion-weighted imaging (DWI) and parent-report of sensory features were acquired from 133 children (61 autistic children with and 72 non-autistic children, 6-11 years-old). Leveraging novel DWI processing techniques, we investigated the relationship between sensory features and white matter microstructure properties (free-water-elimination-corrected fractional anisotropy [FA] and mean diffusivity [MD]) in precisely delineated brainstem white matter tracts. Follow-up analyses assessed relationships between microstructure and sensory response patterns/modalities and analyzed whole brain white matter using voxel-based analysis.

Results. Results revealed distinct relationships between brainstem microstructure and sensory features in autistic children compared to non-autistic children. In autistic children, more prominent sensory features were generally associated with lower MD. Further, in autistic children, sensory hyporesponsiveness and tactile responsivity were strongly associated with white matter microstructure in nearly all brainstem tracts. Follow-up voxel-based analyses confirmed that these relationships were more prominent in the brainstem/cerebellum, with additional sensory-brain findings in the autistic group in the white matter of the primary motor and somatosensory cortices, the occipital lobe, the inferior parietal lobe, and the thalamic projections.

Limitations. All participants communicated via spoken language and acclimated to the sensory environment of an MRI session, which should be considered when assessing the generalizability of this work to the whole of the autism spectrum.

Conclusions. These findings suggest unique brainstem white matter contributions to sensory features in autistic children compared to non-autistic children. The brainstem correlates of sensory features underscore the potential reflex-like nature of behavioral responses to sensory stimuli in autism and have implications for how we conceptualize and address sensory features in autistic populations.

Background. Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research.

Methods. A comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability.

Results. Eleven key barriers to research participation were identified including gaps in researchers' knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template.

Conclusion. Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.

Countermeasures against Zika virus (ZIKV), including vaccines, are frequently tested in nonhuman primates (NHP). Macaque models are important for understanding how ZIKV infections impact human pregnancy due to similarities in placental development. The lack of consistent adverse pregnancy outcomes in ZIKV-affected pregnancies poses a challenge in macaque studies where group sizes are often small (4–8 animals). Studies in small animal models suggest that African-lineage Zika viruses can cause more frequent and severe fetal outcomes. No adverse outcomes were observed in macaques exposed to 1x10⁴ PFU (low dose) of African-lineage ZIKV at gestational day (GD) 45. Here, we exposed eight pregnant rhesus macaques to 1x10⁸ PFU (high dose) of African-lineage ZIKV at GD 45 to test the hypothesis that adverse pregnancy outcomes are dose-dependent. Three of eight pregnancies ended prematurely with fetal death. ZIKV was detected in both fetal and placental tissues from all cases of early fetal loss. Further refinements of this exposure system (e.g., varying the dose and timing of infection) could lead to an even more consistent, unambiguous fetal loss phenotype for assessing ZIKV countermeasures in pregnancy. These data demonstrate that high-dose exposure to African-lineage ZIKV causes pregnancy loss in macaques and also suggest that ZIKV-induced first trimester pregnancy loss could be strain-specific.

Background. Caregivers of children with autism spectrum disorders (ASD) and developmental disabilities (DD) implement myriad strategies to support their children during daily activities and routines, which are laden with sensory stimuli. Children's sensory features are often characterized by three patterns of response (i.e., hyperresponsiveness, hyporesponsiveness, sensory seeking), and little is known about how caregivers' strategies differ among these patterns. Therefore, we used a mixed methods analysis to examine the complex interplay between children's sensory response patterns, child characteristics (diagnosis, chronological age, mental age), and caregiver strategies. Specifically, we examined how children's sensory response pattern scores were associated with caregiver strategies within sensory response pattern and at the item level. Lastly, we described the differential strategies implemented by caregivers of children with ASD and DD by sensory response pattern.

Materials and Methods. Participants included children with ASD (n = 77) and DD (n = 40) aged 2-10 years. Caregivers completed the Sensory Experiences Questionnaire-2.1. A convergent parallel mixed methods approach was used to analyze data.

Results. Children's sensory response pattern scores were significantly, positively associated with caregiver strategies within each sensory pattern (hyperresponsiveness, hyporesponsiveness, seeking); however, child mental age, and chronological age were not significantly related to the rate of caregiver strategies across patterns. While caregivers of children with ASD reported using more strategies, child diagnosis did not moderate the association between child sensory response pattern scores and the rate of caregiver strategies used. Item analysis demonstrated specific child behaviors in response to sensory stimuli that elicited high rates of strategies among caregivers. Qualitative analysis revealed distinct themes characterized caregiver strategies within each sensory pattern for children with ASD and DD.

Conclusion. Our findings demonstrated specificity of caregiver strategies to children's sensory response patterns in the context of families' everyday lives, which were not contingent on child diagnosis, mental age, or chronological age, thereby highlighting universal qualities of caregiving for young children who experience varying levels of sensory challenges. Targeted intervention approaches may differentially incorporate types of strategies based on sensory response patterns to more optimally facilitate children's activity participation.

This project aimed to develop a comprehensive set of evaluation tools to assess the accessibility and inclusion of families with children on the autism spectrum in cultural institutions. A stakeholder team conducted interviews, reviewed museum artifacts, and observed museum programming. An evaluation toolkit was constructed by incorporating best practices from current literature and collected data. Tools were piloted and revised after being implemented in the museum context. The Toolkit to Increase Accessibility and Inclusion for Children on the Autism Spectrum and with Sensory Processing Differences in Cultural Institutions was developed with five unique tools, the Dimensions of Accessibility framework, and further resources to provide a self-assessment of cultural institutions. The toolkit can be used broadly across many types of institutions and self-assessment can lead to proactive development of public spaces, institutions, and programming that is accessible and inclusive of diverse groups of people, beyond families with children on the autism spectrum.

Importance. Motor and sensory challenges are commonly reported among autistic individuals and have been linked to challenges with daily living skills (DLS). To best inform clinical intervention, greater specificity in how sensory and motor challenges relate to DLS is needed.

Objective. To evaluate the relationship between combined sensory and motor scores and DLS performance among autistic and nonautistic children and to explore associations between motor scores and performance on specific DLS items.

Design. Descriptive design.

Setting. University research lab.

Participants. Autistic children, nonautistic children with no family history of or diagnosis related to autism, and nonautistic children with a family history of or diagnosis related to autism (ages 6-10 yr; N = 101). All participants communicated verbally.

Intervention. None. Outcomes and Measures: Parent-report measures of DLS and sensory features and standardized assessments of motor performance.

Results. Findings indicated a strong relationship between motor difficulties and all domains of DLS. At the item level, motor skills were associated with occupations of dressing, bathing, health management, cleaning up and organization, meal preparation and clean-up, education, and safety. Combined sensory and motor measures better predicted DLS than sensory or motor measures alone.

Conclusions and Relevance. Children with motor and sensory challenges are likely to experience challenges with a diversity of occupations, which is important given the prevalence of motor and sensory challenges among autistic children and among children with other neurodevelopmental conditions. Therapeutic interventions that account for or address these motor challenges and associated sensory features are likely to further enhance DLS.

What This Article Adds. A combination of motor challenges and sensory features better predict DLS than either motor or sensory challenges alone. In addition, motor challenges in children are most highly associated with DLS challenges in the domains of dressing, bathing, cleaning, education, safety, health, and meal preparation. Occupational therapists can use this information when considering how the results of sensory and motor assessment may guide clinical intervention in autistic and nonautistic children.

Children in lower income households are less likely to be diagnosed with autism spectrum disorder (ASD) and diagnosis is often delayed. Lack of or delayed identification of ASD minimizes a child's ability to receive effective early intervention services that support development of functional independence skills. Research has yet to identify relationships between functional independence and household income for children with ASD. A cross-sectional national survey with 231 caregivers of children with autism aged 2-12 years was conducted. Caregivers completed a 90-min survey examining family demographics, intervention services, autism symptom severity, and children's functional behavioral outcomes. Significant differences in functional independence behavior scores were identified for children from the highest and lowest income categories when controlling for autism symptom severity, age of diagnosis, and receipt of intervention services. This study provides preliminary evidence to support the association between income and functional independent behavior for children with ASD.

Infants exposed to Zika virus (ZIKV) prenatally may develop birth defects, developmental deficits, or remain asymptomatic. It is unclear why some infants are more affected than others, although enhancement of maternal ZIKV infection via immunity to an antigenically similar virus, dengue virus (DENV), may play a role. We hypothesized that DENV immunity may worsen prenatal ZIKV infection and developmental deficits in offspring. We utilized a translational macaque model to examine how maternal DENV immunity influences ZIKV-exposed infant macaque neurodevelopment in the first month of life. We inoculated eight macaques with prior DENV infection with ZIKV, five macaques with ZIKV, and four macaques with saline. DENV/ZIKV-exposed infants had significantly worse visual orientation skills than ZIKV-exposed infants whose mothers were DENV-naive, with no differences in motor, sensory or state control development. ZIKV infection characteristics and pregnancy outcomes did not individually differ between dams with and without DENV immunity, but when multiple factors were combined in a multivariate model, maternal DENV immunity combined with ZIKV infection characteristics and pregnancy parameters predicted select developmental outcomes. We demonstrate that maternal DENV immunity exacerbates visual orientation and tracking deficits in ZIKV-exposed infant macaques, suggesting that human studies should evaluate how maternal DENV immunity impacts long-term neurodevelopment.

Objectives. Examine healthcare usage, pharmacy prescriptions and healthcare cost among people with Intellectual Disability (ID) who participate in Special Olympics (SO) compared to people with ID who do not participate in SO. In addition, a subanalysis was completed to compare SO athletes who participated in the Healthy Athlete program to those who had not.

Methods. Ten years of data were extracted based on active claim and identification. Final analyses included non-SO participants and SOWI athletes for healthcare and pharmacy.

Results. SOWI athletes who participated in the Healthy Athlete program had significantly lower healthcare and pharmacy usage, and cost than SOWI athletes who did not participate controlling for race, ethnicity, and age.

Conclusions. Public health programs may have variable levels of effectiveness when addressing health disparities for people with ID.

Background. Understanding the daily health experiences of people with intellectual disability is necessary to illuminate factors that may be influencing health and health disparities. The objective of this study is to understand how people with intellectual disability participate in and access health promotion.

Methods. Ten adults with intellectual disability engaged in an adapted photovoice study.

Results. Four themes emerged: Health Is Who We Are; Health is What We Do; Health Is Our Body, Mind, and Place; and Barriers and Facilitators. Participants communicated an understanding of health, a strong identity of themselves as being healthy, and diverse participation in health promotion. Additionally, participants identified specific resources and support necessary to pursue health. Participants' broad description of health aligns with understandings of the social determinants of health.

Conclusion. Participant's holistic view of health and experienced factors of health promotion should inform the development and implementation of inclusive health programming for people with intellectual disability.

Motor challenges are commonly reported in autism spectrum disorder (ASD). Yet, there is substantial heterogeneity in motor ability within ASD, and it is unknown what behavioral characteristics best explain individual differences in motor ability in ASD and related conditions. This observational study examined motor ability as a function of sensory features, attention deficit/hyperactivity symptoms, ASD symptoms, and IQ in 110 children with ASD, typical development, or an intermediate behavioral profile. While motor challenges were more prevalent in the ASD group compared to other groups, sensory symptom severity and IQ across all individuals best predicted motor performance above-and-beyond group status. Therefore, motor challenges may be best characterized by individual variation in sensory features and cognitive abilities rather than diagnostic group.

Congenital Zika virus (ZIKV) exposure results in a spectrum of disease ranging from severe birth defects to delayed onset neurodevelopmental deficits. ZIKV-related neuropathogenesis, predictors of birth defects, and neurodevelopmental deficits are not well defined in people. Here we assess the methodological and statistical feasibility of a congenital ZIKV exposure macaque model for identifying infant neurobehavior and brain abnormalities that may underlie neurodevelopmental deficits. We inoculated five pregnant macaques with ZIKV and mock-inoculated one macaque in the first trimester. Following birth, growth, ocular structure/function, brain structure, hearing, histopathology, and neurobehavior were quantitatively assessed during the first week of life. We identified the typical pregnancy outcomes of congenital ZIKV infection, with fetal demise and placental abnormalities. We estimated sample sizes needed to define differences between groups and demonstrated that future studies quantifying brain region volumes, retinal structure, hearing, and visual pathway function require a sample size of 14 animals per group (14 ZIKV, 14 control) to detect statistically significant differences in at least half of the infant exam parameters. Establishing the parameters for future studies of neurodevelopmental outcomes following congenital ZIKV exposure in macaques is essential for robust and rigorous experimental design.

Background and Objectives. Though exercise for care recipients receives considerable emphasis, few dyadic studies focus on caregivers. This systematic review identified dyadic exercise interventions, which measured outcomes for older adult caregivers. Studies that met inclusion criteria were examined to better understand whether caregivers derived greater benefit from exercising with care recipients, or not exercising at all.

Research Design and Methods. PRISMA guidelines were followed to identify quantitative studies of dyadic exercise interventions in which caregivers enrolled with care recipients, and either coparticipated in exercise; or while their care recipients exercised independently, caregivers received a separate, nonexercise intervention or usual care (UC). To be included, studies had to measure physical or psychosocial outcomes for caregivers. Study quality was assessed via the Downs and Black checklist.

Results. Eleven studies met inclusion criteria. In six, the dyad exercised; in five, care recipients exercised while caregivers received a separate program, or UC. Results suggest that caregivers may improve both psychosocial and physical health when exercising together with care recipients. Caregivers who did not exercise but received a separate, nonexercise intervention, such as support, education, or respite, showed psychosocial benefits. Those who received UC were less likely to derive physical or psychosocial benefits. Included studies were fair to good quality with moderate to high risk of bias.

Discussion and Implications. Often examined secondarily, caregivers are overlooked for participation in interventions with care recipients. This analysis suggests that caregivers may benefit from dyadic interventions in which they either exercise together with their care recipients or receive a separate nonexercise intervention or respite.

BACKGROUND. Objective gait evaluation in humans is used as a predictive disability outcome measure as well as an indicator for intervention effectiveness. Parallel methods of gait analysis in nonhuman primate models are essential for clinical translation. The goal of this study was to first assess whether marmosets' gait data could be reliably collected in a Noldus CatWalk XT10.6 and second, establish a testing protocol to assess gait and the intraindividual variability during repeated testing.

NEW METHOD. The CatWalk, originally developed for rodents, was modified and used to assess gait in eight adult common marmoset monkeys across multiple days and trials. Data was first analyzed to identify valid runs. Repeated measures ANOVA was completed for the following gait measures: mean base of support, average stride length, average swing time, and average stance time.

RESULTS. Raters had a high level of concurrence of usable data across all trials with successful trials including four consecutive hindfoot footfalls, during a continuous, uninterrupted segment of walking. A significant main effect of time (p < 0.000) but not rater (p = 0.98) was present with significant interactions for time by subject (p < 0.000), but not rater per subject (p = 0.538), time (p = 0.186), or three-way interaction (p = 0.297).

COMPARISON WITH EXISTING METHOD(S). Gait has been assessed using force-plate and video data. The CatWalk allowed reproducible, automated and translational locomotor data to be collected at multiple time points with detailed analyses that identified a diagonal gait pattern.

CONCLUSIONS. The CatWalk system, similar to those used in humans, can be effectively used to quantify spatiotemporal characteristics of gait in the common marmoset.

Keywords. Common marmosets; Monkeys; Gait; Locomotion; Stride; Duty cycle

OBJECTIVE. The purpose of this systematic review was to evaluate the evidence for the effectiveness of parent-mediated interventions on occupational performance of children with autism spectrum disorder (ASD).

METHOD. We conducted a search of academic databases using terms such as autism spectrum disorder, parent, caregiver, and intervention. Five hundred eighty-two articles were reviewed, and 109 were selected for full-text review. The final analysis included 13 articles.

RESULTS. Strong evidence was found for the efficacy of parent-mediated intervention for increasing child joint attention. Moderate evidence was found for the improvement of language scores, expressive language, nonverbal communication, initiation and response to interaction, behavior, play, adaptive functioning, ASD symptoms, and social communication.

CONCLUSION. This systematic review suggests that parent-mediated interventions for children with ASD can improve various aspects of communication and ASD symptoms, with emerging support for occupational performance. Occupational therapy practitioners are well suited to facilitate these interventions to support families with children with autism.

OBJECTIVE. We identified and described the strategies parents use to support the mealtime participation of their child with autism spectrum disorder (ASD).

METHOD. Twelve families with children with ASD (ages 2-7 yr) participated in videotaped mealtime observations. Qualitative content analysis was used to identify strategies families used to facilitate participation.

RESULTS. Six categories were identified: (1) parent intervening and ignoring, (2) meal preparation and adaptability, (3) play and imagination, (4) distractions, (5) positive reinforcements, and (6) modeling. Props-common child objects that support the child's mealtime participation-were used in the context of multiple strategies. In addition, increased parental vigilance emerged as an important component of all family mealtimes.

CONCLUSION. Families used multiple strategies within and across mealtimes, highlighting the individualistic nature of feeding challenges. Understanding parent mealtime strategies allows for further investigation into the efficacy and development of intervention strategies to promote mealtime participation of children with ASD.

Mealtime is an important family routine commonly affected for families with children with autism spectrum disorders (ASD). Limited research is available regarding strategies families incorporate to support mealtime engagement. The purpose of this study was to explore the frequency and characterize the purpose of Props used during mealtimes with children with ASD. A total of 12 families with a child(ren), N = 14, aged 2 to 7 years, with ASD and mealtime challenges or eating difficulties participated in video-recorded mealtimes in their home. Independent coders analyzed mealtimes for the frequency and purpose of Props (items used to support child participation during mealtime). Props were used by 75% of families (n = 9); common Props included toys, electronics, and books. Props were used primarily as a self-regulation tool for the child and occasionally as positive reinforcement for specific behaviors. Overall, Props were used to support child engagement in mealtime. Occupational therapists should consider using Props as individualized, accessible, and supportive mealtime interventions for families and children.

Keywords. caregivers, family centered practice, pediatrics

BACKGROUND. Individuals with intellectual disability (ID) are at an increased risk for health disparities that serve as barriers to participation in daily occupations. Understanding the lived experience of individuals with ID can illuminate barriers and facilitators to these health-promoting occupations. Commonly used methods examining health for individuals with ID may not reveal important information about their daily participation potentially due to cognitive or communication limitations. Participatory action research including Photovoice is a viable alternative to meet their unique needs.

OBJECTIVE. The purpose of this study was to describe the process of using a Photovoice method with individuals with ID and present results from two participants to understand their meaning of health.

METHOD. An analysis of two participants is provided to illustrate the use of Photovoice.

RESULTS. Three themes, Personal Identity of Health, Nutrition, and Meaningful Occupation were identified using photos, personal narratives, and focus group data.

CONCLUSIONS. Participants had complex definitions of health that are better understood through the composite of narrative descriptions and visual data as compared to more commonly used research methods. The use of a Photovoice method allowed participants to communicate additional depth and complexity of their understanding of health that has not been previously captured.

Keywords. Participatory action, Photovoice, health disparities, intellectual disabilities, occupation

Participatory action research methodologies may empower and protect marginalized individuals; however, they remain underutilized. Limited studies have investigated the impact of participatory action research, specifically on individuals with intellectual disability (ID). This study examines (1) the perspectives of co-researchers with ID on their involvement in the research process and (2) the feasibility of their inclusion based on perspectives of research staff (academic faculty and graduate students without ID). Three co-researchers with ID were interviewed regarding their research participation. Thematic analysis of interviews identified four themes: (1) Shared Experience of Disability, (2) Teaching and Guidance, (3) Acquisition of Skills and Knowledge, and (4) Value of Participation. Research staff reviewed field notes and identified benefits and challenges to feasibility of including co-researchers with ID. Inclusion of co-researchers with ID was found to be both meaningful and feasible.

Keywords. co-researcher, inclusive research, intellectual disability, participatory methods

The common marmoset (Callithrix jacchus) is an increasingly popular non-human primate species for developing transgenic and genomic edited models of neurological disorders. These models present an opportunity to assess from birth the impact of genetic mutations and to identify candidate predictive biomarkers of early disease onset. In order to apply findings from marmosets to humans, a cross-species comparison of typical development is essential. Aiming to identify similarities, differences, and gaps in knowledge of neurodevelopment, we evaluated peer-reviewed literature focused on the first 6 months of life of marmosets and compared to humans. Five major developmental constructs, including reflexes and reactions, motor, feeding, self-help, and social, were compared. Numerous similarities were identified in the developmental sequences with differences often influenced by the purpose of the behavior, specifically for marmoset survival. The lack of detailed knowledge of marmoset development was exposed as related to the vast resources for humans.

Keywords. callithrix jacchus, human, marmosets, motor, neurodevelopment, reflexes

Pediatric occupational therapy practitioners frequently provide interventions for children with differences in sensory processing and integration. Confusion exists regarding how best to intervene with these children and about how to describe and document methods. Some practitioners hold the misconception that Ayres Sensory Integration intervention is the only approach that can and should be used with this population. The issue is that occupational therapy practitioners must treat the whole client in varied environments; to do so effectively, multiple approaches to intervention often are required. This article presents a framework for conceptualizing interventions for children with differences in sensory processing and integration that incorporates multiple evidence-based approaches. To best meet the needs of the children and families seeking occupational therapy services, interventions must be focused on participation and should be multifaceted.

Sensory features are prevalent and heterogeneous across children with ASD and these features have been associated with child outcomes. Identification of clinically defined sensory subtypes may enhance our understanding of unique phenotypes that have implications for etiology, prognosis, and intervention. This longitudinal study used a national online survey aimed to identify associations of previously validated sensory subtypes to specific child and family characteristics and functional outcomes [Vineland Adaptive Behavior Scale-II (VABS) and Parenting Stress Index short form (PSI)]. The sensory experiences questionnaire-3.0 was collected from caregivers with children with ASD, ages 2-12, at two time points (Time 1, n = 1307, Time 2, n = 884), 1 year apart. Functional outcomes assessments were collected at the second time point. A latent profile transition analysis (LPTA) was used to test associations, and results indicated that the attenuated-preoccupied subtype presented with the significantly lowest levels of VABS adaptive behavior composite scores compared to the other three sensory subtypes. Both the VABS maladaptive behavior index and the total PSI score were significantly highest in the extreme-mixed subtype. These results underscore the clinical utility of this subtyping approach for differentiating characteristics and functional outcomes associated with clinically defined sensory phenotypes. These findings may have implications for better understanding etiology, prognosis, and more precise targets for interventions designed to ameliorate sensory difficulties, and ultimately mitigate negative developmental consequences and parenting stress.

OBJECTIVE. We examined the effects of a guided imagery intervention on perceived stress in pregnant adolescents.

METHOD. Thirty-five pregnant adolescents recruited from a local alternative education program participated in a guided imagery intervention. Participants listened to a pregnancy-specific guided imagery recording on four separate occasions during their pregnancies. Perceived stress was measured immediately before and after each session using the Perceived Stress Measure-9 (PSM-9).

RESULTS. Participants' pre- and postsession PSM-9 scores for three of the four sessions demonstrated a significant reduction in stress. Participants' baseline stress levels also decreased significantly across the four listening sessions. The greatest reductions in stress within and between sessions occurred in the early sessions, with effects diminishing over time.

CONCLUSION. Pregnant teens experienced initial short- and long-term stress reduction during a guided imagery intervention, supporting the use of guided imagery to reduce stress in pregnant adolescents.

Keywords. health promotion, imagery (psychotherapy), pregnancy in adolescence, stress, psychological

Sensory features are highly prevalent among children with autism spectrum disorders (ASD) and have been shown to cluster into four patterns of response, including hyperresponsiveness, hyporesponsiveness, enhanced perception, and sensory interests, repetitions and seeking behaviors. Given the lack of large-scale research on the differential effects of sensory response patterns on children's participation in specific activities, this study investigated the extent to which sensory response patterns impacted six dimensions of children's activity participation as measured by the Home and Community Activities Scale among a large, national sample of school aged children with ASD (n = 674). Using mixed model regression, results showed that sensory response patterns differentially impacted dimensions of activity participation, and associations were moderated by a number of child characteristics.

Background. Sensory features are highly prevalent and heterogeneous among children with ASD. There is a need to identify homogenous groups of children with ASD based on sensory features (i.e., sensory subtypes) to inform research and treatment.

Methods. Sensory subtypes and their stability over 1 year were identified through latent profile transition analysis (LPTA) among a national sample of children with ASD. Data were collected from caregivers of children with ASD ages 2-12 years at two time points (Time 1 N = 1294; Time 2 N = 884).

Results. Four sensory subtypes (Mild; Sensitive-Distressed; Attenuated-Preoccupied; Extreme-Mixed) were identified, which were supported by fit indices from the LPTA as well as current theoretical models that inform clinical practice. The Mild and Extreme-Mixed subtypes reflected quantitatively different sensory profiles, while the Sensitive-Distressed and Attenuated-Preoccupied subtypes reflected qualitatively different profiles. Further, subtypes reflected differential child (i.e., gender, developmental age, chronological age, autism severity) and family (i.e., income, mother's education) characteristics. Ninety-one percent of participants remained stable in their subtypes over 1 year.

Conclusions. Characterizing the nature of homogenous sensory subtypes may facilitate assessment and intervention, as well as potentially inform biological mechanisms.

This national online survey study characterized sensory features in 1,307 children with autism spectrum disorder (ASD) ages 2-12 years using the Sensory Experiences Questionnaire Version 3.0 (SEQ-3.0). Using the SEQ-3.0, a confirmatory factor analytic model with four substantive factors of hypothesized sensory response patterns (i.e., hyporesponsiveness; hyperresponsiveness; sensory interests, repetitions and seeking behaviors; enhanced perception), five method factors of sensory modalities (i.e., auditory, visual, tactile, gustatory/olfactory, vestibular/proprioceptive), and one of social context were tested with good model fit. Child and family characteristics associated with the sensory response patterns were explored. The effect of sensory response patterns on autism severity was tested, controlling for key child and family characteristics. The SEQ-3.0 demonstrates an empirically valid factor structure specific to ASD that considers sensory response patterns, modalities, and social context.

Objective. The purpose of this study was to empirically derive dimensions of activity participation among a sample of school-age children with autism spectrum disorder (ASD; n = 713). Additionally, we examined the associations between dimensions of activity participation and child characteristics (i.e., chronological age, autism severity, gender) and family demographics (i.e., maternal education).

Methods. Exploratory factor analysis was used to determine the factors on the Home and Community Activities Scale (HCAS). Multiple regression was used to examine the extent to which child characteristics and family demographics were related to HCAS dimensions.

Results. A six-factor model best characterized activity participation among the school-age children with ASD, and child characteristics and family demographics were differentially associated with HCAS dimensions.

Conclusion. The findings have implications for how activities may be categorized for children with ASD and suggest that the frequency of specific activities is affected by child characteristics and maternal education.

Feeding disorders are prevalent in children with autism spectrum disorder (ASD) and can have a profound impact on family mealtimes. Mothers of 6 children with ASD were interviewed to explore family mealtime experiences. Narrative and thematic analysis were used. Analysis discovered varying mealtime practices across participants; however, similarities were evident across all families. Mealtimes were important to all families, but challenging to construct, often involving exhaustive work by the mother. Nutrition was a high priority for all and mothers detailed the battle with “healthy food” intake for their child with ASD, as the child displayed atypical food preferences, food selectivity, and disruptive mealtime behaviors. Four core themes emerged as mother’s narrated typical mealtimes in their households: (a) Eating Together, (b) Adapted Mealtime Routines, (c) Constructing Mealtimes Alone, and (d) No Longer Just a Sibling. An overwhelming similarity among mothers was the experience of stress surrounding aspects of mealtime that was interwoven throughout the 4 themes.

Keywords. autism, feeding, family mealtime, narrative

BACKGROUND. Fragile X syndrome (FXS) is known to be associated with a range of developmental challenges, yet the occurrence and intensity of therapy services along with associated factors have not been determined.

METHOD. In a US national survey, caregivers provided information regarding the therapy services received by their sons (n = 1013) and daughters (n = 283) with FXS (from birth to 63 years; mean = 15.6 years, SD = 10.6). Caregivers reported (1) type, (2) amount, (3) location, and (4) overall satisfaction with services. Associations with other child variables and family income were also examined.

RESULTS. Key findings included that 72% of males and 47% of females were currently receiving at least one type of therapy service; the most common services for both males and females were speech-language therapy (ST) and occupational therapy (OT). Overall, males were more likely to receive therapy services as well as a greater number of services than females. Autism status was significantly associated with both males and females receiving ST and males receiving OT and behaviour management therapy. Therapies were provided in a variety of locations, and parents were generally satisfied with the amount and quality of therapy services. Age-related declines were evident in the use of services for both males and females, with very few individuals receiving any therapy services after 20 years of age.

CONCLUSIONS. This study provides a baseline description of the current state of therapy services for children with FXS, laying a foundation for future research and recommendations for service provision and policy.

Keywords. behaviour management therapy, fragile X syndrome, national survey, occupational therapy, physical therapy, speech-language therapy

We sought to examine concurrent and longitudinal associations between sensory response patterns (i.e., hyperresponsiveness, hyporesponsiveness, and sensory seeking) and verbal status of young children with autism spectrum disorder (ASD) as a potential factor influencing the development of verbal communication. Seventy-nine children with ASD (verbal, n = 29; nonverbal, n = 50) were assessed using cross-sectional analyses (Study 1), and 14 children with ASD (verbal, n = 6; nonverbal, n = 8) were assessed using prospective longitudinal analyses (Study 2). Data were collected regarding sensory response patterns and verbal ability. Hyporesponsiveness and sensory seeking behaviors were associated with verbal status in both cross-sectional and longitudinal analyses; nonverbal children were more likely to demonstrate higher hyporesponsive and sensory seeking patterns. Hyperresponsiveness did not significantly differ between verbal and nonverbal groups in either design. Sensory hyporesponsiveness and seeking behaviors may be important factors hindering the development of functional verbal communication in children with ASD. Unusual sensory responsiveness can often be observed before the onset of speech and may yield important prognostic capabilities as well as inform early interventions targeting verbal communication or alternative communication options in young children with ASD.

The recently expanded Sensory Experience Questionnaire (Version 3.0; SEQ; Baranek, 1999; Baranek, David, Poe, Stone, & Watson, 2006) is a caregiver report assessment intended to be used by researchers and clinicians to characterize the sensory features in children ages 2–12 years with autism spectrum disorder (ASD) and/or developmental disabilities (DD) in social and nonsocial contexts. The questionnaire takes about 15–20 minutes to complete by a parent or a caregiver and can also be administered in a structured interview format if necessary. The SEQ (Version 3.0) has 105 items that measure the frequency of sensory behaviors across sensory response patterns (i.e., hyporesponsiveness, hyperresponsiveness, sensory seeking, and enhanced perception), modalities (i.e., auditory, visual, tactile, gustatory, and vestibular), and social or nonsocial contexts. The first 97 items measure the frequency using a 5-point Likert scale ranging from 1 (almost never) to 5 (almost always).

[Abstract truncated from publisher page — full abstract behind paywall.]

[Abstract not available — this is a short clinical practice article; no abstract was published for this piece.]

[Abstract not available — this is a short clinical practice article; no abstract was published for this piece.]