Telehealth parent training for a young child at risk for autism spectrum disorder

The global pandemic has highlighted the importance of telehealth to access behavioral interventions. Face-to-face parent training improves the development and behaviors of young children at risk for autism spectrum disorder (ASD). We evaluated a telehealth parent training intervention for a child at risk for ASD. Two parents identified possible early ASD symptoms in their 30-month-old son (lack of imitation, pointing, and vocal manding). Both parents simultaneously received telehealth behavioral skills training on the Parent Intervention for Children at Risk for Autism program for 1 hour per week over 29 weeks. Multiple baseline designs across parent and child behaviors showed that both parents improved their parent teaching fidelity above 80% and the child improved on all trained behaviors. This study expands the utility of telehealth behavioral parent training to young children at risk for ASD to mitigate early symptoms of ASD.     

高风险婴儿前瞻性纵向研究与孤独症谱系障碍早期识别

孤独症谱系障碍(Autism Spectrum Disorder, ASD)早期识别有助于早期诊断和早期干预的实施, 对于改善ASD儿童发育结果至关重要。高风险前瞻性纵向研究以高风险婴儿(ASD儿童的年幼同胞, 入组年龄小于12个月)作为主要研究对象, 通过对ASD高风险婴儿(24至36个月之间诊断为ASD的高风险婴儿)的早期发育轨迹的描绘和核心症状早期表现的识别, 为ASD早期识别提供了重要依据。未来可以增加被试数量、延长观察时间并密集观察时间点、关注伴发障碍、综合考虑遗传、环境和文化因素影响, 并结合早期干预研究进行深入探索。未来在中国开展相关研究具有重要的科学价值和临床意义。     

An evaluation of parents as behavior change agents in the Preschool Life Skills program

Parental involvement in intervention can support intervention efficacy, improve generalization, and increase accessibility. The Preschool Life Skills (PLS) program is designed to teach 13 preschool life skills and prevent problem behavior. The current study explores the utility of the PLS program as delivered by parents. In Experiment 1, 6 parents were taught to use the PLS program at home with their typically developing children (3 years 3 months to 4 years 11 months). This application of the PLS program led to an increase in preschool life skills and a decrease in problem behavior and supported some generalization of the target preschool life skills from the home to preschool settings. In Experiment 2, 7 parents were taught to use the PLS program with their children with autism spectrum disorder (ASD; 3 years 11 months to 6 years 9 months). Results overall supported the parent implementation of the program and highlighted modifications required to support positive outcomes for children with ASD.     

Behavioral Parent Training Engagement Among Young Children With Autism Spectrum Disorder

The purpose of the current study was to examine engagement with Behavioral Parent Training (BPT) for families of children with Autism Spectrum Disorder (ASD) and assess openness to novel delivery formats for BPT (e.g., telehealth, group). Participants were caregivers of 501 children with ASD (ages 2–6) enrolled in the SPARK (Simons Foundation Powering Autism Research for Knowledge) online national registry. The study assessed: (1) rates of child disruptive behavior diagnoses, (2) engagement and satisfaction with BPT, (3) parent and child factors (e.g., diagnostic history), and (4) openness to novel delivery formats. Almost 25% of young children with ASD in this sample had disruptive behavior problems rising to the level of a diagnosis of ADHD or ODD and thus would benefit from BPT. However, only one third of these families had actually been referred to BPT. Families indicated high level of interest in participating in BPT, with a particular interest in Parent Child Interaction Therapy (PCIT) as well as novel delivery formats such as telehealth and group. Specific components of the therapy and delivery formats were indicative of parent satisfaction (e.g. groups, longer treatment sessions, longer treatment length). Specific parent and child characteristics were predictive of openness to novel formats (e.g. parental depression, more severe behavioral challenges, lower verbal skills). Results underscore the need for increased referrals and access to BPT programs the ASD population. Both parent and child characteristics are important for determining appropriate delivery formats.     

Parents' Experiences with Genetic Counseling After the Birth of a Baby with a Genetic Disorder: An Exploratory Study

Little is known about factors determining which families utilize genetic counseling services. We conducted semistructured interviews with parents of four children born with cystic fibrosis (CF) and ten with Down's syndrome (DS) to ascertain reasons for using, or not using, genetic counseling services in the state of Victoria, Australia. We also explored the usefulness of genetic counseling for the families who had experienced it, and the perceived role of genetic counseling. All mothers of children with CF see a genetic counselor as part of a structured education program following diagnosis through newborn screening. Information overload was identified by them as an important problem. There is no specific program for families of children with DS. Six of them had received genetic counseling and four had not, either because it was not specifically offered to them or because they did not pursue it in the context of misconceptions about its purpose. The timing of the offer of genetic counseling is important and needs to take into account parents' coping strategies after diagnosis. Several parents commented on the favorable aspects of counseling, including getting information they needed to deal with the diagnosis and relief of guilt. Better awareness of genetic counseling by referring physicians, and providing counseling at more than one visit, may contribute to a more effective service.     

Underutilization of Genetics Services for Autism: The Importance of Parental Awareness and Provider Recommendation

Reasons for the underutilization of genetics services by families of children with autism spectrum disorders (ASD) are not well understood. We report the identification of factors associated with this underuse. Survey-based study of parents and/or guardians of children with ASD. One hundred fifty-five families completed the questionnaire. Thirty-one of 155 (20%) children had seen a genetics professional. Forty-nine of 154 (32%) children had undergone genetic testing. Parents whose child saw a genetics professional were more likely to 1) Have a primary provider refer for or suggest a genetics evaluation 2) Have asked for a referral, and/or 3) Know another person with a genetic cause of ASD. amilies of children with ASD who have not received genetics services are less aware of their availability and utility. They are also less likely to have their provider recommend a clinical genetics evaluation. Efforts should be taken to increase awareness of both health providers and parents regarding the usefulness of genetics services for ASD.     

Experiences of Australian Siblings of an Individual With an Autism Spectrum Disorder

The experiences of 75 non-Autism Spectrum Disorder (NASD) children and adolescents who had a sibling with an Autism Spectrum Disorder (ASD) were investigated. Differences were found according to age and gender for issues such as amount of time spent with their sibling and access to parents. Having a younger sibling with an ASD was associated with a lower level of confidence in being to live their lives as they wished. Female NASD participants commented that their lives were more influenced than male NASD participants. About half of all NASD participants reported inconsistencies in family rule adherences and parental expectation.     

The Role of Professional Training Experiences and Manualized Programs in ABA Providers’ Use of Parent Training With Children With Autism

Parent training, in which providers teach parents intervention strategies to promote their children’s skill acquisition and/or behavior management, is considered a best practice in the treatment for children with autism spectrum disorder (ASD) and yet is underutilized in community settings. The present study examined the role of training experiences and manual use in promoting the use of parent training by community providers who serve children with ASD. Applied behavior analysis (ABA) providers (N = 1,089) from across the United States completed self-report questionnaires online. The total number of professional training experiences related to parent training significantly predicted the extensiveness of providers’ use of parent training. Receiving supervision in parent training, being trained in a specific parent training approach, taking a course related to parent training, and participating in self-guided learning (e.g., webinar) were unique predictors of parent training extensiveness. While only 15% of ABA providers used manualized parent training programs, using a manual was also a unique predictor of parent training extensiveness. Parallel multiple mediator analyses demonstrated that family-, provider-, and organization-level barriers all partially mediated the relationship between number of training experiences and parent training extensiveness; only provider- and organization-level barriers mediated the relationship between manual use and parent training extensiveness. Recommendations for training and supporting providers at the pre-service and in-service levels are discussed as a means of increasing access to parent training for children with ASD in community settings.     

Peering into a Chilean Black Box: Parental Storytelling in Pediatric Genetic Counseling

While genetic counseling has expanded to multiple international settings, research about providing culturally sensitive services to non-U.S. patients is limited. To gain insights, we utilized a process study to explore parental communication in pediatric genetics clinics in Chile. We utilized a phenomenological hermeneutic approach to assess storytelling in six pediatric sessions that were conducted in Spanish, and translated into English. The majority of the sessions focused on information gathering (35 %), and providing medical (20 %) and genetics education (18 %). The 14 instances of storytelling we identified usually emerged during information gathering, genetics education, and the closing of the session. Stories illustrated parental efforts to create a cognitive and emotional context for their child’s genetic diagnosis. Parents emerged as competent caregivers who discussed the role of the child as a social being in the family and the larger community. Our analysis found that genetic counseling sessions in the U.S. and Chile are structured similarly and although communication is not a balanced process, parents use storytelling to participate as active agents in the session. Via storytelling, we learned that parents are working to understand and gain control over their child’s genetic diagnosis by relying on mechanisms that extend beyond the genetics appointment.     

Teaching conversational speech to children with autism spectrum disorder using text‐message prompting

The present study was designed to teach conversational speech using text‐message prompts to children with autism spectrum disorder (ASD) in home play settings with siblings and peers. A multiple baseline design across children was used. Children learned conversational speech through the text‐message prompts, and the behavior generalized across peers and settings. Maintenance of treatment gains was seen at 1‐month follow‐up probes. Social validity measures indicated that parents of typically developing children viewed the participants' conversational speech as much improved after the intervention. Results are discussed in terms of the efficacy of text‐message prompts as a promising way to improve conversational speech for children with ASD.     

A Pilot Study of Acute Stress Symptoms in Parents and Youth Following Diagnosis of Type I Diabetes

The primary aims of this exploratory study were to determine the rate of occurrence of acute stress disorder (ASD) in children newly diagnosed with Type 1 diabetes and their parents, to examine relationships with demographic and psychosocial factors, and to examine the relationships between ASD symptom clusters and early adherence behavior (clinic attendance). The sample consisted of 102 parents of children ages 0–17 years and 40 youth ages 11–17 who were evaluated within three days of diabetes diagnosis. Eighteen percent of parents and 17% of youth reported subthreshold symptoms of ASD. Acute stress symptoms and demographic variables predicted clinic attendance, with a differential pattern evident in the responses of youth and their parents. These findings reinforce the importance of screening symptoms of ASD in youth with newly diagnosed diabetes and their parents to assist in identifying families who may be in need of additional support.     

ABA-Based Programs for Children Diagnosed With Autism Spectrum Disorder: Parental and Professional Experiences at School and at Home

Having a child diagnosed with Autism Spectrum Disorder (ASD) poses a range of challenges to families, many of which can be addressed through appropriate intervention. A study of parental (n = 95) and professional (n = 67) experiences was carried out in relation to two settings: (a) schools that provided intensive interventions based on the science of Applied Behavior Analysis (ABA), and (b) non-intensive ABA-based home programs. Results show that parents whose children attend ABA-based schools were generally more satisfied with their child's educational provision, monitoring procedures, and level of staff training, than parents who were not offered ABA-based education in schools.     

母亲依恋风格与孤独症谱系障碍儿童母子依恋:母亲教养方式的中介作用

早期依恋对孤独症谱系障碍（Autism Spectrum Disorders,简称ASD）儿童的心理健康、人际关系以及未来的社会融合有重要影响。本研究采用问卷调查法,对从北京、青岛、郑州、武汉、无锡和赤峰市等地28所融合幼儿园中筛选出来的210名ASD儿童及其母亲进行施测,考察母亲的依恋风格对ASD儿童母子依恋的影响,以及母亲教养方式在其中的中介作用。研究发现：（1）总体而言,ASD儿童与母亲之间的依恋关系总体状况良好;轻度ASD儿童的母子依恋水平显著高于中度、重度ASD儿童;（2）母亲依恋回避、依恋焦虑与ASD儿童母子依恋均呈显著负相关;母亲关爱、鼓励自主与ASD儿童母子依恋均呈显著正相关,母亲控制与ASD儿童母子依恋呈显著负相关;母亲依恋回避、依恋焦虑与母亲关爱均呈显著负相关,与母亲控制均呈显著正相关;（3）母亲关爱在母亲依恋回避与ASD儿童母子依恋之间起部分中介作用,母亲关爱、母亲控制在母亲依恋焦虑与ASD儿童母子依恋之间起完全中介作用。     

Ethnic Differences in Parental Perceptions of Genetic Testing for Deaf Infants

As genetic testing becomes an integral part of the evaluation of deaf infants and children, it is important to understand parental views on genetic testing. The purpose of this study is to examine parental reasons for, and beliefs about, genetic testing for deafness in early-identified infants, and to determine if they differ as a function of ethnicity. We present baseline data collected from 56 Caucasian, 59 Hispanic, and 24 Asian parents of deaf children participating in a longitudinal, prospective study on genetic testing for connexin-related deafness. The overall finding is that reasons for, and beliefs about, genetic testing for deafness varied as a function of ethnicity. Virtually all parents sought genetic testing to understand why their child is deaf. However, Asian and/or Hispanic parents were more likely than Caucasian parents to view family planning, helping with their child's medical care, and helping the family as other important reasons for testing, and were more likely than Caucasian parents to perceive genetic testing to be useful for these purposes. Asian and Hispanic parents were more likely than Caucasian parents to perceive genetic testing in harmful terms. Genetic testing fulfills a cognitive need for parents to understand why their child is deaf, yet differences in responses suggest that Asian and Hispanic parents may seek testing for other purposes. Understanding different perspectives on genetic testing for deafness will enhance genetic counselors' cultural competence and facilitate the pre-test genetic counseling session.     

场景的年龄特征会影响自闭症谱系障碍儿童的注视模式

为了探讨场景年龄特征对ASD儿童场景注视模式的影响,选取14名自闭症谱系障碍（ASD）儿童和19名与其智力年龄匹配的正常发育（TD）儿童为被试,在被试对儿童场景和成人场景图片进行自由观看的同时记录其眼动。结果发现,ASD儿童对全图、面部、眼部和嘴部的访问均显著少于TD儿童,对背景区域的访问显著大于TD儿童;ASD和TD儿童对面部和身体的访问时间比都显著大于前景与背景兴趣区;ASD儿童对儿童场景中面部、眼部和嘴部兴趣区的访问时间比大于成人场景,而TD儿童则相反;两组儿童都表现出对儿童场景中背景的偏好。结果表明,在场景注视中,ASD与TD儿童具有相似的社会性注意倾向,对社会性信息给予更多注视,但ASD儿童表现更弱;场景的年龄特征会影响ASD儿童与TD儿童的场景注视模式,相对于成人场景,ASD儿童更偏向于注视儿童场景中的面孔和背景。     

自闭症谱系障碍个体的社会动机缺陷

自闭症谱系障碍(ASD)是一种源于儿童期的神经发育障碍, 社会交往障碍是其核心特征, 与社会动机缺陷密切相关。社会动机是引导个体社会行为的强大动力, 主要表现为社会定向、社会奖赏和社会维持。现有研究表明, ASD个体的社会动机发展存在缺陷, 他们对社会刺激的注意偏向减少, 不能主动寻求和体会社会互动带来的快乐, 且缺乏维持社会关系的行为策略等。然而, 相关研究结果受到个体特征、环境和实验设计等因素的影响。研究者未来应综合考虑这些影响因素, 加强对ASD个体社会动机理论的整合研究, 以便全面系统地了解ASD个体的社会动机缺陷。     

The Internal Structure of the Aberrant Behavior Checklist Irritability Subscale: Implications for Studies of Irritability in Treatment-Seeking Youth With Autism Spectrum Disorders

Given the prominence of the Aberrant Behavior Checklist (ABC), Irritability Subscale (ABC-I), in treatment outcome studies, we conducted a critical examination of its internal consistency and relationship to other measures of irritability in 758 psychiatrically hospitalized youth with autism spectrum disorder. In exploratory and confirmation samples, we conducted factor and bifactor analyses to describe the internal structure of the ABC-I. Our results suggest that the ABC-I roughly represents a unidimensional construct of irritability, as indicated by a general factor in bifactor analysis. In addition to irritability, subordinate factors are presented that represent tantrums, verbal outbursts, self-harm, and negative affect. Notably, self-harm items explain a large proportion of variance independent of irritability. Therefore, their contribution in analyses of treatment effects should be considered. Further study or revision of the ABC-I may improve convergent validity with transdiagnostic formulations of irritability as well as prevent confound from self-harm in treatment studies for irritability in ASD     

自闭症儿童能否痊愈?——来自谱系个体“最佳结果”及剩余缺陷研究的证据分析

自闭症谱系障碍预后效果不佳, 通常被认为是一种伴随终生的疾病。不过随着研究的拓展和深入, 部分早期被诊断为自闭症的儿童, 随着年龄增长和相关干预措施的介入, 其认知、适应性等方面均可达到正常发展水平, 并且不再符合自闭症的诊断标准, 即达到了“最佳结果”。但多数个体仍然存在不同程度的剩余缺陷。本文以自闭症预后结果评定和“最佳结果”定义演变为切入点, 分析“最佳结果”个体剩余缺陷的具体表现, 并梳理此类群体的个体特征与结果预测因素, 以期能为自闭症个体的系统干预提供有效依据。     

Coping and care-related stress in parents of a child with autism spectrum disorder

Background and Objectives: Parenting a child with Autism Spectrum Disorder (ASD) is challenging and can result in elevated levels of parenting stress. This study investigated the relationship between parent-ratings of their child’s ASD symptoms and two conceptually different measures of parenting stress: One specific to the ASD context and the other a general stress measure applicable to the broader caregiving context. Additionally, the influence of coping style on the relationship between child’s ASD symptoms and parenting stress was investigated.

Design and Methods: Using an internet survey, parents (N?=?178) caring for a child with ASD reported on coping strategies, completed two measures of parenting stress, and assessed their child’s ASD symptoms.

Results: Parenting stress increased with severity of the child’s ASD symptoms, but the strength of this relationship depended on whether a general or disorder-specific measure of parenting stress was used. Regression analyses indicated that some coping strategies moderated the impact of ASD symptom severity on the parent’s care-related stress, but moderation depended on how stress was conceptualized.

Conclusion: This study reinforces the importance of identifying the coping strategies of parents of children with developmental disorders, and highlights the consequences of using different conceptual approaches to measure parenting stress.