Reaction to Diagnosis and Parental Concerns in Parents of Children and Young Adults With XYY Syndrome.

BACKGROUND: There is a growing interest in exploring parents' views on the benefits of early diagnosis and awareness of sex chromosome trisomies. However, only a few studies focus specifically on the experience of parents of children with XYY syndrome. The present study aimed to assess, in parents of individuals with XYY, the perceived severity of their children's condition, their level of satisfaction with the disclosure process and their concerns about their children's present and future condition. METHODS: A national online sample of 56 Italian parents of children and young adults diagnosed with XYY syndrome participated in the study. They filled out a specifically developed online survey that assessed their children's areas of concern, their experience with the disclosure process and their worries about their children's condition. RESULTS: Seventy per cent of the parents received a prenatal diagnosis, whereas 30% received a postnatal diagnosis. High individual variability was found in the parent report of their child's condition. The most frequent areas of concern were attention regulation, emotion control and behaviour control. Individuals with a postnatal diagnosis showed more severe profiles. Parents were generally dissatisfied with the disclosure process, with no differences between prenatal and postnatal disclosure. However, more than 50% of the parents who received a prenatal disclosure reported that their child's condition was less severe than they had expected. In contrast, only 11% of the parents with postnatal disclosure reported this situation. Parents' concerns were negatively related to global satisfaction with the disclosure process and the correspondence between current and expected conditions but positively associated with the child's severity level. CONCLUSIONS: The results suggest that clear and realistic information during the disclosure process to parents is needed in both prenatal and postnatal communication and may alleviate parents' concerns.

Parents' perceptions and concerns regarding pediatric dental care under general anesthesia in Riyadh (Saudi Arabia): a cross-sectional study.

The prevalence of dental caries in Saudi children is estimated to be 80% for primary dentition and 70% for permanent dentition. Dental treatment under general anesthesia (GA) might be recommended for children with uncooperative behavior or complicated dental treatment requirements. Despite its advantages, some parents have concerns regarding this approach. Nonetheless, little is known about Saudi parents' perceptions and concerns regarding pediatric dental treatment under GA. The main objective of this study was to determine parents' concerns and perceptions on pediatric dental treatment under GA in Saudi Arabia. It is a cross-sectional survey study. The inclusion criteria were: Arabic-speaking parents of healthy children aged 1-14 years referred to GA screening for dental treatment in a hospital. The final study cohort comprised 319 participants. The first part of the questionnaire included the children's and parents' demographic and clinical input, while the second part comprised the parents' perceptions and concerns. The survey was distributed in the dental office during GA screening visits. Our findings revealed that most parents were concerned about possible GA-related complications (78%), followed by postoperative pain (51%), intravenous line and cannula (49%) and coma or death (46%). This study highlights that most Saudi parents were concerned about the use of GA in pediatric dental treatment and the need for more awareness regarding the risks, benefits and expected outcomes of pediatric dental care under GA.

Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method.

Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this article is to understand the contribution of previous research on parental perspectives in pediatric palliative care through a systematic review of literature. Nine articles that met the inclusion criteria were accessed and seven key themes emerged; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective. This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: spiritual, financial, psychological, cultural and social.

Dying concerns in young parents with advanced cancer (PWAC): A scoping review.

BACKGROUND: Advanced cancer in young parents (PWAC) can increase dying concerns, the fluctuating thoughts, or feelings, conscious, or unconscious, about an approaching death by a person facing a terminal illness or a family member coping with the impending death of a loved one. However, limited research has been conducted to identify dying concerns in an ill parent as the research has focused on older adults. OBJECTIVE: Our goal was to identify dying concerns that PWAC are expressing and to understand how these concerns affect measurable outcomes. METHOD: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection were searched. Articles included were samples of PWAC, peer-reviewed, and published within the last 10 years. Elderly or pediatric populations, PWAC with adult children, and early-stage cancer were excluded. The initial search resulted in 1,526 articles, 18 were identified as potentially relevant. Fourteen articles were identified and reviewed. RESULTS: PWAC expressed concerns for their children (n = 11), concerns for their co-parent (n = 4), and personal concerns (n = 11). Additionally, PWAC have decreased quality of life, have significant emotional and psychological distress, and have increased family dysfunction in relation to their concerns. Samples limit the generalizability of the findings. Majority of the articles consisted of White, upper, middle-class (n = 8) women (n = 7) diagnosed with breast cancer (n = 11) within nuclear families (n = 11). SIGNIFICANCE OF RESULTS: Dying concerns are described in the literature from a fairly narrow sample of PWAC. Future research should focus on recruiting participants from diverse backgrounds, genders, diagnosis types, and non-nuclear families. Identifying concerns for the co-parent would also add to the understanding of dying concerns.

Parental concerns and uptake of childhood vaccines in rural Tanzania - a mixed methods study.

BACKGROUND: Vaccine hesitancy has been recognized as an important barrier to timely vaccinations around the world, including in sub-Saharan Africa. In Tanzania, 1 in 4 children is not fully vaccinated. The objective of this mixed methods study was to describe and contextualize parental concerns towards vaccines in Tanzania. METHODS: Between 2016 and 2017, we conducted a cross-sectional survey (n = 134) and four focus group discussions (FGDs, n = 38) with mothers of children under 2 years of age residing in Mtwara region in Southern Tanzania. The survey and FGDs assessed vaccination knowledge and concerns and barriers to timely vaccinations. Vaccination information was obtained from government-issued vaccination cards. RESULTS: In the cross-sectional survey, 72% of mothers reported missed or delayed receipt of vaccines for their child. Although vaccine coverage was high, timeliness of vaccinations was lower and varied by vaccine. Rural mothers reported more vaccine-related concerns compared to urban mothers; literacy and access to information were identified as key drivers of the difference. Mothers participating in FGDs indicated high perceived risk of vaccine-preventable illnesses, but expressed concerns related to poor geographic accessibility, unreliability of services, and missed opportunities for vaccinations resulting from provider efforts to minimize vaccine wastage. CONCLUSIONS: Findings from our cross-sectional survey indicate the presence of vaccination delays and maternal concerns related to childhood vaccines in Tanzania. In FGDs, mothers raised issues related to convenience more often than issues related to vaccine confidence or complacency. Further research is necessary to understand how these issues may contribute to the emergence and persistence of vaccine hesitancy and to identify effective mitigation strategies.

Parental interest in genomic sequencing of newborns: enrollment experience from the BabySeq Project.

PURPOSE: Newborn genomic sequencing (nGS) has great potential to improve pediatric care. Parental interest and concerns about genomics are relatively unexplored. Understanding why parents decline research consent for nGS may reveal implementation barriers. METHODS: We evaluated parental interest in a randomized trial of nGS in well-baby and intensive care unit nursery settings. Interested families attended an informational enrollment session (ES) with a genetic counselor prior to consenting. Reason(s) for declining participation and sociodemographic associations were analyzed. RESULTS: Of 3860 eligible approached families, 10% attended ES, 67% of whom enrolled. Of 1760 families queried for decline reasons, 58% were uninterested in research. Among 499 families considering research, principal reasons for decline prior to ES included burdensome study logistics (48%), feeling overwhelmed postpartum (17%), and lack of interest/discomfort with genetic testing (17%). Decliners after ES more often cited concerns about privacy/insurability (41%) and uncertain/unfavorable results (23%). CONCLUSION: Low interest in research and study logistics were major initial barriers to postpartum enrollment and are likely generic to many postpartum research efforts. Concerns over privacy and result implications were most commonly cited in decliners after ES. Understanding parental concerns around research nGS may inform future integration of nGS into newborn screening, predictive testing, and pediatric diagnostics.

Predictors of parental concerns about child weight in parents of healthy-weight and overweight 2-6 year olds.

INTRODUCTION: Parental awareness and concerns about a child's weight can promote healthy food parenting behaviors. Understanding the factors that influence parent's concerns about childhood (over)weight may help professionals define more effective strategies when working with families. This study aimed to assess parental concerns about their young child's weight and to identify contributors of parental concerns about weight in parents of healthy-weight and overweight children, considered separately. MATERIAL AND METHODS: Data collection was performed using a cross-sectional design. Parents of 339 children aged from 2 to 6 years completed a Children's Eating Habits Questionnaire and rated their perceptions of and concerns about their child's weight and diet quality. Children's body mass index was assessed and two samples were defined according to the child's nutritional status: healthy-weight (N = 230) and overweight (N = 109) children. Binomial logistic regression was used to predict parental concerns about the child's weight in each sample. RESULTS: Parental concerns about the child's weight were moderate in both groups. For healthy-weight children, parental concerns about the child's weight were significantly predicted by the parents' perception of the child's weight, concerns about the child's diet and the child's healthy food intake. In the overweight children group, parents' perception of the child's weight, concerns about the child's diet and perception of the child's diet quality predicted parental concerns, with the child's gender and recall of physician's warnings about the child's overweight condition as marginal predictors. CONCLUSIONS: Our results show that concerns about the child's weight in these two groups of parents share some common determinants but also differ regarding other factors, thus suggesting the need to consider these differences when working with parents of young children with different weight status.

Parents' initial concerns about the development of their children later diagnosed with fragile X syndrome.

BACKGROUND: Retrospective parental reports have often been used to identify the early characteristics of children later diagnosed with a developmental disorder. METHOD: We applied this methodology to document 13 parents' initial concerns about the development of their 17 children later diagnosed with fragile X syndrome (FXS). Parents were additionally asked about when they noticed the emergence of behavioural signs related to FXS. RESULTS: More than half of the parents reported initial concerns prior to the child's first birthday and in most cases it was deviant motor behaviours that caused the first concerns. Behavioural signs related to the FXS phenotype were also reported to be perceptible in the first year of the child's life. CONCLUSIONS: Due to limitations of retrospective parental questionnaires, we suggest that other methodologies, such as home video analysis, are needed to complement our understanding of the pathways of developmental disorders with late clinical onsets.

Parental concerns on disclosure of HIV status to children living with HIV: children's perspective.

Disclosure is an important component of comprehensive management of children living with HIV infection (CLHIV). Many parental concerns are barriers for disclosure in children and only few studies addresses children's perspective on these concerns. Our study aims to understand children's perspective on parental concerns for disclosure and assess the knowledge of HIV. A questionnaire-based cross-sectional study involving CLHIV between 10 and 18 years attending HIV clinic in southern India, was conducted. Data were collected by directly interviewing only the children after obtaining consent from parents/caregivers. Initial open-ended questions were asked to assess the disclosure status and only fully disclosed children were included. Out of 362 enrolled eligible children, the prevalence of full and partial disclosure was 36.7% and 24%, respectively. The mean age of disclosure was 10.4 years (SD ± 2.6) and non-parental family members in an informal setting were the most common source of disclosure (38.3%). Forty-six percentages of parents were unaware of their child's disclosure status. Only 2% had disclosed their status to others who were not part of their care. Among disclosed children, 33.8% became upset or sad upon knowing their status, 12% faced discrimination and 41.4% had complete knowledge about their illness. Though the prevalence of disclosure among CLHIV was high, a majority of them had incomplete knowledge about HIV infection. The parental concerns as reported in literature like the child is too young to disclose, concerns about coping, fear of stigma and discrimination and child disclosing to others were not expressed by children.

When do parents and child health professionals agree on child's psychosocial problems? Cross-sectional study on parent-child health professional dyads.

BACKGROUND: About one third of all parents have concerns about their child's psychosocial development. Agreement between child health professionals (CHPs) and parents about such concerns may improve treatment adherence and outcomes. This study investigates which child, parenting and/or environmental stressors are associated with (dis)agreement in concerns regarding psychosocial problems in children, in parent-CHP dyads. METHODS: During routine child health assessments, data were collected from a sample of children aged 14 months to 12 years (n = 3,870). CHPs registered the psychosocial problems that they identified, and parents reported their concerns. Child psychosocial stressors were measured with the ITSEA/CBCL, and the child's history of psychosocial problems. Environmental stressors referred to stressful family/contextual situations in the past year, and parenting stressors to perceived parenting efficacy. RESULTS: The CHPs and parents disagreed on 36.4 % of the children. CHPs based their identification of problems mainly on children's history of past problem (OR = 5.85, 95% CI = 4.74-7.22). Parental concerns were most likely in case of an increased ITSEA/CBCL score (OR = 7.69, CI = 5.39-10.97). CHP-parent agreement was more likely in case of a combination of child psychosocial, parenting and environmental stressors (OR = 35.58, CI = 24.11-52.48). Parental concerns not confirmed by the CHP were associated with higher educated parents, originating from an industrialized country, and younger children. The CHP-identified problems not confirmed by parental concerns were associated with older children. CONCLUSION: Agreement between CHPs and parents is associated with a co-occurrence of child, parenting and environmental stressors. Improved agreement between CHP and parents will increase the likelihood of shared decision-making regarding follow-up care and compliance with advice.

Ethnicity and children's diets: the practices and perceptions of mothers in two minority ethnic groups in Denmark.

This study explores concerns and dilemmas connected with diet, health and child-feeding in families with ethnic minority background. The aim is to contribute to better targeting of dietary advice to ethnic minority parents in Denmark. Four focus group interviews were carried out with mothers of children between 4 months and 2 and a half years who were descendants of Turkish or Pakistani immigrants. The focus groups investigated: (1) everyday feeding practices; (2) values and concerns behind food choice; (3) social and cultural norms influencing feeding and eating practices; (4) experienced dilemmas in dietary change; and (5) sources of nutritional advice. Public health authorities in Denmark tend to link diet-related health problems among ethnic minority populations with their ethnic identity, dichotomising ethnic and Danish dietary habits. This may overlook values and concerns other than those related to ethnicity that are sometimes more important in determining food habits. The present study found that child-feeding practices were shaped by two main aims: (1) securing and improving child health; and (2) ensuring multi-cultural eating competence in children. The results confirm that ethnic distinctions do matter in the concerns and dilemmas mothers experience when feeding their children, but they also challenge the health authorities' reliance on dichotomies in promoting health among immigrant families. The participants' ethnic self-identification through food practices did not refer primarily to the birthplaces of their parents. Rather, it was context dependent and directed simultaneously towards majority and minority culture.

Evaluating the Efficacy of Combining Sensory Room and Conventional Therapies for Lebanese Children With Autism: A 10-Year Study.

Background Autism spectrum disorder (ASD) is a developmental condition characterized by sensory difficulties, which pose a significant challenge. Our aim is to evaluate the effectiveness of sensory room therapy in conjunction with traditional therapy, comparing it to traditional therapy alone, among children diagnosed with ASD in Lebanon. Methods A retrospective longitudinal study with cross-sectional survey (mixed study) was conducted over a 10-year period, involving 548 children diagnosed with autism spectrum disorder (ASD). The children were divided into two groups: group 1, comprising 306 children who received conventional therapy in addition to sensory room therapy, and group 2, consisting of 242 children who received conventional therapy alone. Data collection included sociodemographic characteristics, autism-related features, and scores from the Parental Concerns Questionnaire Inferring Alterations (PCQIA) scale, which measures sensory and behavioral characteristics. Data were collected at two time points: before the initiation of sensory room therapy and after the completion of the therapy, allowing for an assessment of changes and effectiveness post-treatment. Results In both groups, there was no significant difference in PCQIA scores following conventional therapy alone (group 1: mean score 34.1, group 2: mean score 33.4; p=0.222). However, a significant increase in PCQIA scores was observed after the addition of sensory room therapy in group 1 (combined therapy), with scores rising from a pre-therapy mean of 34.1 to a post-therapy mean of 41.7 (p<0.001). Moreover, there was a positive correlation between PCQIA scores and parental income. Additionally, 78.2% of parents rated sensory room therapy as highly effective, with 62% reporting significant improvement in their children's behavior and 80% noting increased engagement in extracurricular activities. Notably, 98% of parents indicated they would recommend the combined therapy to others. Conclusion Sensory room therapy demonstrates improvement in sensory challenges and motor skills among children diagnosed with ASD.

Quebec-based parents' concerns regarding their children's multilingual development.

Many parents express concerns for their children's multilingual development, yet little is known about the nature and strength of these concerns - especially among parents in multilingual societies. This pre-registered, questionnaire-based study addresses this gap by examining the concerns of 821 Quebec-based parents raising infants and toddlers aged 0-4 years with multiple languages in the home. Factor analysis of parents' Likert-scale responses revealed that parents had (1) concerns regarding the effect of children's multilingualism on their cognition, and (2) concerns regarding children's exposure to and attainment of fluency in their languages. Concern strength was moderate to weak, and cognition concerns were weaker than exposure-fluency concerns. Transmission of a heritage language, transmission of three or more languages, presence of developmental issues, and less positive parental attitudes towards childhood multilingualism were associated with stronger concerns. These findings have both theoretical and practical implications: they advance our understanding of parental concerns and facilitate the development of support for multilingual families.

Roadside experiences of parents of children with developmental coordination disorder and/or attention deficit hyperactivity disorder.

Introduction: Pedestrians are a vulnerable group at the roadside and previous research has identified that children with DCD and ADHD are at a heightened risk of pedestrian injuries. Despite this, limited research has explored parental perspectives of the pedestrian risks faced by children with DCD and/or ADHD. Understanding parents' perspectives provides a unique insight into the challenges children face every day and the concerns that parents perceive regarding their children's safety as pedestrians. Therefore, the aim of this study was to explore parents' perspectives of the pedestrian risks faced by their children with DCD and/or ADHD. Methods: Semi-structured interviews were conducted with 14 parents of primary school and early secondary school aged children with age range 7-17. The participants were divided into three groups based on their children's conditions: DCD group (10-17 years, n = 3), ADHD group (7-13 years, n = 5), and co-occurring group (7-16 years, n = 6). All parents confirmed an existing diagnosis and completed the SNAP-IV and DCDQ as screening tools. The interviews explored parents' perspectives regarding their children's pedestrian behaviors, parents' concerns and preventative measures taken to improve the pedestrian safety of their children with DCD and/or ADHD. Reflexive thematic analysis was undertaken to analyze the interviews, from which three themes were developed. Results: The first theme related to the challenges experienced by children at the roadside; parents emphasized the significance of structured and controlled pedestrian crossing sites, underlining their preference for designated crossings as safer options due to their heightened perceptions of risk associated with other road-crossing locations. The second theme: parental concerns and influences on children's road safety referred to their children's performance and safety at the roadside, leading to increased monitoring and a more protective approach to road crossing. The third theme: road safety education related to various strategies parents implemented to mitigate risks, while balancing independence and prioritizing their safety. Discussion: While there were commonalities in the challenges faced by children with DCD and/or ADHD at the roadside, there were also notable differences. Parents of children with DCD discussed challenges with spatial awareness and motor skills, whereas parents of children with ADHD discussed challenges with impulsivity and inattention. Parents of children with co-occurring DCD and ADHD described a complex interplay of these challenges. It is evident from the interviews that children with DCD and/or ADHD require a distinct approach to develop their pedestrian skills effectively and parents reported specific strategies they used to address the risks associated with their children's roadside behavior. Promoting pedestrian safety for children with DCD and/or ADHD necessitates collaboration among parents, schools and local authorities to implement comprehensive measures ensuring their safety. These findings contribute to understanding parental experiences and needs, providing valuable guidance for targeted interventions and policies to enhance the road safety of children with DCD and/or ADHD.

Children's activities, parental concerns, and child care service utilization in the early stages of the COVID-19 pandemic.

Introduction: In the early stages of the COVID-19 pandemic, most Canadian provinces and territories enacted public health measures to reduce virus spread, leading most child care centers across the country to limit or halt in-person service delivery. While it is broadly known that the range of activities available to children and youth reduced drastically as a result, research has yet to explore if and how children's activities shifted in relation to changes in child care arrangements. Method: Children's activities during the early months of the pandemic were assessed based on parent-report data (n = 19,959). Activity patterns were extracted via latent profile analysis. Thereafter, differences in child-care related outcomes across profiles were compared via logistic regression models. Results: Latent profile analysis yielded three distinct activity patterns: Screenies (91.5%) were children who engaged in high amounts of screen use relative to all other activities; Analog children (3.1%) exhibited mostly off-screen activities (e.g., reading, physical exercise); and children in the Balanced group (5.4%) appeared to pursue a wide variety of activities. Children were more likely to fall into the Screenies or Balanced profiles when caregivers reported changes in child care arrangements. Moreover, parents of children with Balanced activity profiles were more likely to be planning to use child care when services reopened post-pandemic, compared to parents of children in the Analog group. Discussion: The present findings call attention to heterogeneity in children's activities during COVID-19, which should be considered in the context of pandemic-related child care closures. Implications for children, families, and child care services during and beyond COVID-19 are discussed.

Relationship between Parental Concerns about Social-Emotional Reciprocity Deficits and Their Children's Final ASD Diagnosis.

Concerns raised by parents regarding their child's development are compatible with the child's final diagnosis of autism spectrum disorder. A better understanding of the relationship between parental concerns and a final diagnosis of autism spectrum disorder is therefore critical. In the current study, we compared the frequencies of parental concerns related to DSM-5 criteria for autism spectrum disorder between pair-matched groups with and without a final diagnosis of autism spectrum disorder and determined which parental concerns predicted a final diagnosis of autism spectrum disorder. The cohort included 80 participants (48-154 months of age, IQ > 70) assessed for a possible autism spectrum disorder diagnosis. Parental concerns were retrieved from the free-description portion of the introductory questions of the Autism Diagnostic Interview-Revised and analyzed to assess whether they corresponded to any of the seven DSM-5 criteria for ASD. The two groups only differed in the frequency of parental concerns relating to deficits in social-emotional reciprocity. Parents of children diagnosed with autism spectrum disorder were four times as likely to report deficits in social-emotional reciprocity. This finding highlights the significance of parental concerns regarding deficits in social-emotional reciprocity in predicting a final diagnosis of autism spectrum disorder.

Impact of a hypothetical COVID-19 vaccine mandate on parental likelihood to vaccinate children: Exploring school-related concerns and vaccination decision-making.

OBJECTIVE: We assessed the impact of a hypothetical school-entry COVID-19 vaccine mandate on parental likelihood to vaccinate their child. METHODS: We collected demographics, COVID-19-related school concerns, and parental likelihood to vaccinate their child from parents of patients aged 3-16 years seen across nine pediatric Emergency Departments from 06/07/2021 to 08/13/2021. Wilcoxon signed-rank test compared pre- and post-mandate vaccination likelihood. Multivariate linear and logistic regression analyses explored associations between parental concerns with baseline and change in vaccination likelihood, respectively. RESULTS: Vaccination likelihood increased from 43% to 50% with a hypothetical vaccine mandate (Z = -6.69, p < 0.001), although most parents (63%) had no change, while 26% increased and 11% decreased their vaccination likelihood. Parent concerns about their child contracting COVID-19 was associated with greater baseline vaccination likelihood. No single school-related concern explained the increased vaccination likelihood with a mandate. CONCLUSION: Parental school-related concerns did not drive changes in likelihood to vaccinate with a mandate.

Parent-reported atypical development in the first year of life and age of autism diagnosis.

This study examined whether parent-reported atypical development in their child's first year was associated with age of diagnosis and age when parents first needed to consult a specialist about their child's development. It involved 423 children who participated in the Australian Autism Biobank. Most parents retrospectively identified ≥ 1 domain of atypical child development. Atypical development in most domains was associated with an earlier age when parents felt specialist consultation was needed. Atypical development in the "gaze abnormalities", "lack of response to social stimuli", and "no social communication" subdomains within the social domain was associated with an earlier age of diagnosis, as was atypical development in the "hypo/hypersensitivity" and "preoccupation with parts of objects" subdomains within the stereotyped/restricted behavior domain.

The influence of race on parental beliefs and concerns during an autism diagnosis: A mixed-method analysis.

LAY ABSTRACT: The goal of this study was to examine if there were differences between races in parental concern and belief about autism spectrum disorder (ASD) and the perspectives of clinicians. We studied 489 children with ASD who were having their first evaluation at an ASD clinic. Parents of White children most often believed that their child had ASD. However, White children whose parents believed the child had ASD were less severe in their symptoms. Parents of Black/African American or Hispanic children were more likely to have concerns about communication than parents of White children. In Hispanic families, parental concern about social communication was related to more severe symptoms in children. We discuss the implications of our findings for diagnosis.

Utilization of the Maternal and Child Health Handbook in Early Identification of Autism Spectrum Disorder and Other Neurodevelopmental Disorders.

There is relatively little information about prospectively reported developmental milestones from caregivers of children who go on to be diagnosed with neurodevelopmental disorders (NDDs), including autism spectrum disorder (ASD). The current study examined rates of early skill attainment in 5-year-old children who participated in a comprehensive in-person assessment for NDDs in Hirosaki in Japan. Developmental milestone data were extracted from their Maternal and Child Health Handbook (MCHH), a booklet distributed to all pregnant women as part of universal health care. Seven hundred and twenty children underwent the assessment, among whom 455 received one or more NDD diagnoses (ASD: n = 124, non-ASD NDD: n = 331). Developmental skills were organized into four domains (motor, social interaction, communication, self-help), and the cumulative number of potential delays in each domain was calculated for each participant within three different age ranges (by 12 months, by 24 months, and by 36 months). Even by age 12 months, children with ASD/NDDs showed more potential delays across domains compared to those who received no NDD diagnosis. However, differences between those with ASD and those with non-ASD NDDs were not apparent until 24 months for social interaction and communication, and 36 months for self-help. These findings provide insights into specific behaviors that could be used to screen for ASD and other NDDs. In addition, the present study indicates the potential utility of the MCHH as a broadband screening tool to educate parents about what to look for in charting their child's early development. LAY SUMMARY: The present study examined prospectively charted developmental milestones from home-based records used as part of universal health care in 720 5-year-old children from Hirosaki, Japan. All children participated in a comprehensive evaluation to determine if they met criteria for a neurodevelopmental disorder (NDD), including autism spectrum disorder (ASD). Compared to those who received no NDD diagnosis, children with NDDs exhibited higher rates of potential delays across developmental domains, including social interaction, communication, and self-help. For some children, these delays were apparent before the age of 12 months. Differences between diagnostic groups became even more pronounced by 24 and 36 months, well before the average age of diagnosis. This suggests that home-based records can be useful tools to educate caregivers about what to look for in charting their child's early development and could assist with early screening efforts.