Continuity of trajectories of autism symptom severity from infancy to childhood.

BACKGROUND: Behavioral symptom trajectories are informative of the development of young children at increased likelihood for autism spectrum disorder (ASD). METHODS: Developmental trajectories of early signs were examined in a cohort of siblings of children diagnosed with ASD (n = 502) from 6 to 18 months using the Autism Observation Scale for Infants (AOSI), and from 18 months to 5-7 years using the Autism Diagnostic Observation Schedule (ADOS). Diagnostic outcomes for ASD at age 3 confirmed diagnosis for 137 children. We further analyzed the conditional probability of a switch from a trajectory measured with the AOSI to a trajectory measured with the ADOS as well as predictors from age 6 months. RESULTS: We derived three early trajectories of behavioral signs ("Low," "Intermediate," and "Increasing") from 6 to 18 months using the AOSI. We then derived three similar, distinct trajectories for the evolution of symptom severity between 18 and 60-84 months of age (Low, Intermediate, Increasing) using the ADOS. Globally, the Low trajectory included children showing fewer ASD signs or symptoms and the Increasing trajectory included children showing more severe symptoms. We also found that most children in the Low AOSI trajectory stayed in the corresponding ADOS trajectory, whereas children in an Increasing AOSI trajectory tended to transition to an Intermediate or Increasing ADOS trajectory. Developmental measures taken at 6 months (early signs of ASD, Fine Motor, and Visual Reception skills) were predictive of trajectory membership. CONCLUSIONS: Results confirm substantial heterogeneity in the early emergence of ASD signs in children at increased likelihood for ASD. Moreover, we showed that the way those early behavioral signs emerge in infants is predictive of later symptomatology. Results yield clear clinical implications, supporting the need to repeatedly assess infants at increased likelihood for ASD as this can be highly indicative of their later development and behavior.

Precursors of self-regulation in infants at elevated likelihood for autism spectrum disorder.

Research concerning temperament in children and adults with autism spectrum disorder (ASD) has suggested a consistent profile of low positive affect, high negative affect, and low regulation (Visser et al., 2016). One area receiving less attention is individual differences among children diagnosed with ASD. The primary objective of this study was to use a person-centered approach to explore heterogeneity of early temperament precursors of regulation in a large sample of infants with elevated familial likelihood of ASD. Early precursors of regulation included temperament assessed at 6, 12, and 24 months whereas outcome measures were diagnosis of ASD, cognitive ability and adaptive behavior at 36 months. Participants included 176 low-likelihood and 473 elevated-likelihood infants, 129 of whom were diagnosed with ASD at 3 years. Results supported a three-profile solution: a well-regulated profile (high positive affect and high attentional focus and shifting), a low attention focus profile (higher attentional shifting compared to attentional focus), and a low attention shifting profile (higher attentional focus compared to attentional shifting). A higher proportion of children diagnosed with ASD were classified into the low attention shifting profile. Furthermore, children with the well-regulated profile were differentiated from the other profiles by a pattern of higher social competence and lower dysregulation whereas children with the low attention focus profile were distinguished from the other profiles by higher cognitive ability at 3 years. The findings indicate that the combination of early positive affect with attention measures may provide an enhanced tool for prediction of self-regulation and later outcomes.

Behavioral and physiological differences during an emotion-evoking task in children at increased likelihood for autism spectrum disorder.

Literature examining emotional regulation in infants with autism spectrum disorder (ASD) has focused on parent report. We examined behavioral and physiological responses during an emotion-evoking task designed to elicit emotional states in infants. Infants at an increased likelihood for ASD (IL; have an older sibling with ASD; 96 not classified; 29 classified with ASD at age two) and low likelihood (LL; no family history of ASD; n = 61) completed the task at 6, 12, and 18 months. The main findings were (1) the IL-ASD group displayed higher levels of negative affect during toy removal and negative tasks compared to the IL non-ASD and LL groups, respectively, (2) the IL-ASD group spent more time looking at the baseline task compared to the other two groups, and (3) the IL-ASD group showed a greater increase in heart rate from baseline during the toy removal and negative tasks compared to the LL group. These results suggest that IL children who are classified as ASD at 24 months show differences in affect, gaze, and heart rate during an emotion-evoking task, with potential implications for understanding mechanisms related to emerging ASD.

Optimizing the integration of family caregivers in the delivery of person-centered care: evaluation of an educational program for the healthcare workforce.

BACKGROUND: While family caregivers provide 70-90% of care for people living in the community and assist with 10-30% of the care in congregate living, most healthcare providers do not meaningfully involve family caregivers as partners in care. Recent research recommends that the healthcare workforce receive competency-based education to identify, assess, support, and partner with family caregivers across the care trajectory. OBJECTIVE: This paper reports a mixed-methods evaluation of a person-centered competency-based education program on Caregiver-Centered Care for the healthcare workforce. METHODS: This foundational education was designed for all healthcare providers and trainees who work with family caregivers and is offered free online (caregivercare.ca). Healthcare providers from five healthcare settings (primary, acute, home, supportive living, long-term care) and trainees in medicine, nursing, and allied health were recruited via email and social media. We used the Kirkpatrick-Barr health workforce training evaluation framework to evaluate the education program, measuring various healthcare providers' learner satisfaction with the content (Level 1), pre-post changes in knowledge and confidence when working with family caregivers (Level 2), and changes in behaviors in practice (Level 3). RESULTS: Participants were primarily healthcare employees (68.9%) and trainees (21.7%) and represented 5 healthcare settings. Evaluation of the first 161 learners completing the program indicated that on a 5-point Likert scale, the majority were satisfied with the overall quality of the education (Mean(M) = 4.69; SD = .60). Paired T-tests indicated that out of a score of 50, post-education changes in knowledge and confidence to work with family caregivers was significantly higher than pre-education scores (pre M = 38.90, SD = 6.90; post M = 46.60, SD = 4.10; t(150) = - 16.75, p < .0001). Qualitative results derived from open responses echoed the quantitative findings in satisfaction with the education delivery as well as improvements in learners' knowledge and confidence. CONCLUSION: Health workforce education to provide person-centered care to all family caregivers is an innovative approach to addressing the current inconsistent system of supports for family caregivers. The education program evaluated here was effective at increasing self-reported knowledge and confidence to work with family caregivers.

Symptom trajectories in the first 18 months and autism risk in a prospective high-risk cohort.

BACKGROUND: Although early autism spectrum disorder (ASD) detection strategies tend to focus on differences at a point in time, behavioral symptom trajectories may also be informative. METHODS: Developmental trajectories of early signs of ASD were examined in younger siblings of children diagnosed with ASD (n = 499) and infants with no family history of ASD (n = 177). Participants were assessed using the Autism Observation Scale for Infants (AOSI) from 6 to 18 months. Diagnostic outcomes were determined at age 3 years blind to previous assessments. RESULTS: Semiparametric group-based modeling using AOSI scores identified three distinct trajectories: Group 1 ('Low', n = 435, 64.3%) was characterized by a low level and stable evolution of ASD signs, group 2 ('Intermediate', n = 180, 26.6%) had intermediate and stable levels, and group 3 ('Inclining', n = 61, 9.3%) had higher and progressively elevated levels of ASD signs. Among younger siblings, ASD rates at age 3 varied by trajectory of early signs and were highest in the Inclining group, membership in which was highly specific (94.5%) but poorly sensitive (28.5%) to ASD. Children with ASD assigned to the inclining trajectory had more severe symptoms at age 3, but developmental and adaptive functioning did not differ by trajectory membership. CONCLUSIONS: These prospective data emphasize variable early-onset patterns and the importance of a multipronged approach to early surveillance and screening for ASD.

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

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

The association between social emotional development and symptom presentation in autism spectrum disorder.

Understanding differences in social-emotional behavior can help identify atypical development. This study examined the differences in social-emotional development in children at increased risk of an autism spectrum disorder (ASD) diagnosis (infant siblings of children diagnosed with the disorder). Parents completed the Brief Infant-Toddler Social-Emotional Assessment (BITSEA) to determine its ability to flag children with later-diagnosed ASD in a high-risk (HR) sibling population. Parents of HR (n = 311) and low-risk (LR; no family history of ASD; n = 127) children completed the BITSEA when their children were 18 months old and all children underwent a diagnostic assessment for ASD at age 3 years. All six subscales of the BITSEA (Problems, Competence, ASD Problems, ASD Competence, Total ASD Score, and Red Flags) distinguished between those in the HR group who were diagnosed with ASD (n = 84) compared to non-ASD-diagnosed children (both HR-N and LR). One subscale (BITSEA Competence) differentiated between the HR children not diagnosed with ASD and the LR group. The results suggest that tracking early social-emotional development may have implications for all HR children, as they are at increased risk of ASD but also other developmental or mental health conditions.

Developmental trajectories of adaptive behavior in autism spectrum disorder: a high-risk sibling cohort.

BACKGROUND: Children with autism spectrum disorder (ASD) often experience impairments in adaptive behavior. METHODS: Developmental trajectories of adaptive behavior in ASD were examined in children from high-risk (siblings of children diagnosed with ASD, n = 403) and low-risk (no family history of ASD, n = 163) families. Children were assessed prospectively at 12, 18, 24, and 36 months of age using the Vineland Adaptive Behavior Scales and underwent a blind independent diagnostic assessment for ASD at 36 months of age. RESULTS: The semi-parametric group-based modeling approach using standard scores on the Adaptive Behavior Composite revealed three distinct developmental trajectories: (a) Group 1 (21.2% of sample) showed average performance at 12 months and a declining trajectory; (b) Group 2 (52.8% of the sample) showed average performance at 12 months with a slightly declining trajectory; and (c) Group 3 (26.0% of the sample) showed a higher level of adaptive behavior at 12 months and a stable trajectory. The Mullen Scales of Early Learning Early Learning Composite and the Autism Observation Scale for Infants total score at 6 and 12 months predicted trajectory membership. CONCLUSIONS: The results emphasize heterogeneous development associated with ASD and the need for interventions tailored to individual presentations.

Commentary: Identifying the Underpinnings of "Care That Honours Seniors" in Alberta.

It is no surprise that seniors' care is an important focus across Canada. Seniors are the fastest growing age group in Canada, and it is not uncommon for this population to have high comorbidity rates, functional impairments and a significant risk of decline. It is essential to support the public in remaining healthy as they age and identify what is truly important to them.

Establishing Effective Resident and Family Councils: A Pilot Project to Increase Family and Resident Engagement in Alberta's Continuing Care Sites.

Resident and family councils aim to improve resident and family satisfaction, but guidelines for councils are scarce. This project developed a toolkit and tested its ability, along with networking meetings, to promote successful councils. Nine continuing care sites participated with residents, family and staff from each site who received the toolkit, completed surveys, attended meetings and participated in post-pilot interviews. Participants found that the toolkit helped improve council function and, with the networking meetings, increased participation. All sites found the toolkit and networking meetings to be valuable resources and had a strong desire to have them available in the future.

Physician education on decision-making capacity assessment: Current state and future directions.

OBJECTIVE: To examine FPs' training needs for conducting decision-making capacity assessments (DMCAs) and to determine how training materials, based on a DMCA model, can be adapted for use by FPs. DESIGN: A scoping review of the literature and qualitative research methodology (focus groups and structured interviews). SETTING: Edmonton, Alta. PARTICIPANTS: Nine FPs, who practised in various settings, who chose to attend a focus group on DMCAs. METHODS: A scoping review of the literature to examine the current status of physician education regarding assessment of decision-making capacity, and a focus group and interviews with FPs to ascertain the educational needs of FPs in this area. MAIN FINDINGS: Based on the scoping review of the literature, 4 main themes emerged: increasing saliency of DMCAs owing to an aging population, suboptimal DMCA training for physicians, inconsistent approaches to DMCA, and tension between autonomy and protection. The findings of the focus groups and interviews indicate that, while FPs working as independent practitioners or with interprofessional teams are motivated to engage in DMCAs and use the DMCA model for those assessments, several factors impede their conducting DMCAs. The most notable barriers were a lack of education, isolation from interprofessional teams, uneasiness around managing conflict with families, fear of liability, and concerns regarding remuneration. CONCLUSION: This pilot study has helped to inform ways to better train and support FPs in conducting DMCAs. Family physicians are well positioned, with proper training, to effectively conduct DMCAs. To engage FPs in the process, however, the barriers should be addressed.

Precocious hand use preference in reach-to-eat behavior versus manual construction in 1- to 5-year-old children.

The variation in hand use as a function of task and developmental age poses a problem for understanding how and when "handedness," preferred use of one hand, develops. The present cross-section study is the first to contrast hand preference use for the natural and frequently used reach-to-eat movement with a constructional task that requires a very similar reach-to-grasp movement. Thirty children between the ages of 1 and 3 years completed an eating task, in which they grasped small food items (Cheerios™ or Froot Loops™) that they brought to the mouth for eating. Thirty children between the ages of 3 and 5 years completed the construction task, in which they grasped LEGO® pieces to construct 3D models. Hand use preference for grasping in the eating and construction tasks was calculated by comparing the percentage of grasps made by the right hand and by the left hand. There were two main findings: First, right hand preference for grasping in the eating task is present as early as 1 year of age, whereas right hand preference for grasping in the construction task does not develop until 4 years of age. Second, right hand preference for grasping is greater in the eating than in the construction task. The results are discussed in relation to the idea that a consideration for task constraints (e.g., unimanual vs. bimanual; eating vs. construction; natural vs. praxic) should be incorporated into the experimental design when measuring hand use in children.

Comparative strengths and challenges on face-to-face and computer-based attention tasks in autistic and neurotypical toddlers.

The objectives were to compare patterns of visual attention in toddlers diagnosed with autism spectrum disorder (ASD) as compared to their sex- and age-matched neurotypical (NT) peers. Participants included 23 toddlers with ASD and 19 NT toddlers (mean age: 25.52 versus 25.21 months, respectively) assessed using computerized tasks to measure sustained attention, disengaging attention, and cognitive control, as well as an in-person task to assess joint attention. Toddlers in the ASD group showed increased looking durations on the sustained attention task, as well as reduced frequencies of responding to and initiating joint attention compared to NT peers, but showed no differences on tasks of disengaging attention and cognitive control. The results suggest that toddlers with ASD have attentional strengths that may provide a foundation for building attention, communicative, and ultimately, academic skills.

Behavioural reactions to an emotion evoking task in infants at increased likelihood for autism spectrum disorder.

Infants at increased likelihood for autism spectrum disorder (ASD) exhibit more negative affect and avoidance behaviour than typically developing infants, and children with ASD express fear differently than typically developing peers. We examined behavioural reactions to emotion-evoking stimuli in infants at increased familial likelihood for ASD. Participants included 55 increased likelihood (IL) infants (i.e., siblings of children diagnosed with ASD) and 27 typical likelihood (TL) infants (i.e., no family history of ASD). At 18 months, we showed infants two masks that commonly elicit fearful responses in older children and examined potential behavioural differences in approach, avoidance, 'freezing', crying, gaze aversion, and smiling. At 24 months, infants were assessed with the Toddler Module of the Autism Diagnostic Observation Schedule, 2nd edition (ADOS-2). Results of video-based coding showed that (1) IL infants exhibited more intense avoidance behaviour than TL infants in response to masks, and (2) intensity of avoidance and duration of freezing were positively correlated with ADOS-2 symptom severity scores. Findings suggest that differences in response to emotion-eliciting stimuli may predict later ASD symptoms. Such behavioural differences may inform early detection and intervention in ASD.

Development of visual and somatosensory attention of the reach-to-eat movement in human infants aged 6 to 12 months.

The reach-to-eat movement is a natural act in which an object or food item is grasped and brought to the mouth. It is one of the earliest forelimb behaviours displayed by human infants, who bring almost all grasped objects to the mouth, and is used daily by adults. In adults, there is a tight coupling between visual attention and the advance phase of the reach-to-eat movement. The target is visually engaged just as hand advance is initiated and visually disengaged just as the target is grasped. This coupling of vision and hand advance suggests that advance is mediated by visual attention and withdrawal by somatosensation. The present study examined when the tight coupling between visual attention and the advance phase of the movement develops in infancy. In a longitudinal study, eight infants, aged 6-12 months, and 20 adults reached for familiar inanimate objects and food items. Visual gaze, hand movement and hand accuracy were measured using frame-by-frame video scoring and 2D kinematic analysis. The study found that the youngest infants (6-8 months) visually engaged the target well before initiating a reaching movement and continued to fixate on the target after it was grasped and as it was brought to the mouth. Between 10 and 12 months of age, infants began to visually engage the target just as the reaching movement was initiated and visually disengaged the target as it was grasped, as did the adults. Over the same developmental time period, the infants developed rotatory hand shaping movements, precision grasping, and improved targeting accuracy both for grasping the object and placing it into the mouth. The results suggest that visual guidance of advance and somatosensory guidance of withdrawal develop together and in concert with hand movement ability and skill.

Hand shaping using hapsis resembles visually guided hand shaping.

The reach-to-grasp movement is composed of a number of movement elements including hand transport, hand shaping, and grasping. These movement elements are featured in grasping when it is guided by vision, when it is guided by haptic input from the non-reaching hand or other body parts, and when it is guided by off-line perceptual (remembered) knowledge. An unanswered question is how is the reach-to-grasp movement achieved when all information about the target must be acquired by the grasping hand? The answer to this question was obtained by asking participants to reach for three randomly presented food items that varied in size: an orange slice, a small round donut ball, or a blueberry. In order to constrain the grasping pattern, participants were asked to pick up an item with the intention of placing it in the mouth. Thus, in the unsighted condition, participants did not know which item they were reaching for until they made haptic contact with it. Hand transport, shaping, and grasping were examined using frame-by-frame video analysis and linear kinematics. These measures showed that in unsighted reaching, hand transport first served to establish haptic contact between either the second or third digit and the target. After haptic identification of the target, the hand and/or grasping digits adjusted their trajectory, reshaped, and reoriented for grasping. A comparison of haptically guided grasping and visually guided grasping indicated that the two were very similar. This similarity is discussed in relation to contemporary ideas concerning the neural mechanisms that guide hand use.

Oral hapsis guides accurate hand preshaping for grasping food targets in the mouth.

Preshaping the digits and orienting the hand when reaching to grasp a distal target is proposed to be optimal when guided by vision. A reach-to-grasp movement to an object in one's own mouth is a natural and commonly used movement, but there has been no previous description of how it is performed. The movement requires accuracy but likely depends upon haptic rather than visual guidance, leading to the question of whether the kinematics of this movement are similar to those with vision or whether the movement depends upon an alternate strategy. The present study used frame-by-frame video analysis and linear kinematics to analyze hand movements as participants reached for ethologically relevant food targets placed either at a distal location or in the mouth. When reaching for small and medium-sized food items (blueberries and donut balls) that had maximal lip-to-target contact, hand preshaping was equivalent to that used for visually guided reaching. When reaching for a large food item (orange slice) that extended beyond the edges of the mouth, hand preshaping was suboptimal compared to vision. Nevertheless, hapsis from the reaching hand was used to reshape and reorient the hand after first contact with the large target. The equally precise guidance of hand preshaping under oral hapsis is discussed in relation to the idea that hand preshaping, and its requisite neural circuitry, may have originated under somatosensory control, with secondary access by vision.

Effectiveness of a parent-mediated intervention for toddlers with autism spectrum disorder: Evidence from a large community implementation.

LAY ABSTRACT: In an effort to increase access to intervention as early as possible for toddlers with autism spectrum disorder or signs thereof, many researchers have developed interventions that can be delivered by parents in their own homes. These parent-mediated approaches have gained a lot of research attention in recent years and have been found to be helpful in terms of parent and toddler learning. Several studies have used a rigorous research design (a randomized controlled trial) to show that parent-mediated intervention can work under ideal well-controlled conditions. To build on this evidence, we also need to examine whether parent-mediated interventions can be taught well through community service providers and delivered in more "real-world" conditions. This study used a research-community partnership to provide a parent-mediated intervention (called the Social ABCs) to 179 families (mean toddler age was 25 months; ranging from 14 to 34 months). Almost 90% of the families completed the 12-week program and 70% returned for a follow-up assessment 3 months later. Analyses showed that parents learned the strategies that were designed to help them support their toddlers' development. Also, toddlers made gains in their language, communication, and social skills. Importantly, parents' use of the strategies was related to toddlers' skill gains, suggesting that the use of the strategies made a difference for the toddlers. Findings support the use of parent-mediated intervention in this very young age group and suggest that such intervention approaches should be made available for community delivery.

Rural Family Caregiving: A Closer Look at the Impacts of Health, Care Work, Financial Distress, and Social Loneliness on Anxiety.

Even before the COVID-19 pandemic, earlier acute care patient discharges, restricted admissions to long-term care, and reduced home care services increased the amount and complexity of family caregivers' care work. However, much less is known about rural caregivers' experiences. Thus, our aim in this sequential mixed-methods study was to understand how COVID-19 affected rural family caregivers. Thematically analyzed interviews and linear regression on survey data were used to understand family caregiver stress. Fourteen rural caregivers participated in interviews. They acknowledged that they benefitted from the circle of support in rural communities; however, they all reported having to cope with fewer healthcare and social services. 126 rural caregivers participated in the online survey. About a third (31%) of these caregivers had moderate frailty, indicating that they could benefit from support to improve their health. In linear regression, frailty, social loneliness, financial hardship, and younger age were associated with caregiver anxiety. Contrary to the qualitative reports that people in rural communities are supportive, over two-thirds of the rural caregivers completing the survey were socially lonely. Rural family caregivers are vulnerable to anxiety and social loneliness due to the nature of caregiving and the lack of healthcare and social service supports in rural areas. Primary healthcare and home care teams are well-positioned to assess caregivers' health and care situation as well as to signpost them to needed supports that are available in their areas.

Temperament in Infancy Predicts Internalizing and Externalizing Problem Behavior at Age 5 in Children With an Increased Likelihood of Autism Spectrum Disorder.

Differences in temperament have been linked to later mental health. Children with autism spectrum disorder (ASD) have an increased likelihood of experiencing such problems, including anxiety, depression, attention deficit/hyperactivity disorder, and oppositional defiant disorder; yet, relations between early temperament and later mental health are not well understood. In this paper, we assess the relationship between temperament in infancy and internalizing and externalizing behavior at age 5, in 178 children at an increased likelihood of being diagnosed with ASD (i.e., younger siblings of children with ASD). Temperament was assessed using the parent-reported Infant Behavior Questionnaire (IBQ) at 6 and 12 months of age and the Toddler Behavior Assessment Questionnaire-Revised (TBAQ-R) at 24 months of age. Mental health problems were assessed using the parent-reported Child Behavior Checklist (CBCL) at age 5. The data were analyzed using hierarchical multiple regressions, with individual temperament subscale scores as single predictor variables (Subscale Score) or temperament profiles using confirmatory factor analyses (Person-Centered Profile) in the first block, Autism Diagnostic Observation Schedule total severity scores at age 3 in the second block, and expressive and receptive language scores (from Mullen Scales of Early Learning) at age 3 in the third block for each model. Three main findings were: (1) 4 of 6 IBQ subscales at both 6 and 12 months significantly predicted internalizing and externalizing problems at age 5; (2) 9 and 8 of 13 TBAQ-R subscales at 24 months significantly predicted internalizing and externalizing problems, respectively, at age 5; and (3) a "sticky attention" temperament profile significantly predicted internalizing problems, whereas a "low-focused" profile significantly predicted externalizing problems, both at age 5. The results of this study support the supposition that temperament is a trans-diagnostic risk factor for later mental health conditions. Exploring temperament profiles and trajectories may illuminate early avenues for prevention in siblings of children with ASD who are at an increased likelihood of experiencing mental health problems, regardless of ASD diagnostic status.