Autism-Specific Primary Care Medical Home Intervention

Forty-six subjects received primary medical care within an autism-specific medical home intervention ( www.autismmedicalhome.com ) and 157 controls received standard primary medical care. Subjects and controls had autism spectrum disorder diagnoses. Thirty-four subjects (74%) and 62 controls (40%) completed pre and post surveys. Controlling for pre-survey medical home status, subjects had 250% greater odds of receipt of a medical home at the study end compared to controls (p = 0.021). Compared to controls, subjects receiving the intervention reported significantly more satisfaction (p = 0.0004), greater shared decision making (p = 0.0005) and fewer unmet needs (p = 0.067). However, subjects reported no change in family stress (p = 0.204).     

Parental adjustment, marital relationship, and family function in families of children with autism

This study aimed to investigate the psychopathology, marital relationship, and family function in parents of children with autistic disorder (autism) as compared to parents of typically developing children. We also compared these measures between the mothers and the fathers. We assessed 151 families with at least one child with autistic disorder and 113 families of typically developing children in Taiwan. Both parents completed the self-administered questionnaires measuring psychopathology, marital dyadic adjustment, and family function. Both parents of children with autism suffered from more psychopathology and less dyadic consensus than parents of typically developing children; mothers of children with autism, perceived less marital satisfaction, affection expression, family adaptability and cohesion than mothers of typically developing children. We also found that mothers of children with autism displayed more psychopathology and marital maladjustment than did the fathers. These findings highlight that parents of children with autism encounter more psychological problems, marital difficulties and family dysfunction, particularly their mothers.     

Vaccine-related beliefs and practices of parents of children with autism spectrum disorders

Although the assertion of a link between vaccines and autism has been scientifically rejected, the theory continues to be popular and may influence the attitudes of parents of children with autism spectrum disorders. The authors sought to assess how often parents change or discontinue their child's vaccine schedule after autism spectrum disorder diagnosis and whether beliefs about the etiology of autism affect their decision to do so. The authors surveyed 197 (43%) of 460 eligible parents of children under 18 years of age with autism spectrum disorders who were enrolled in a state-funded agency that provides services to those with developmental disabilities in western Los Angeles County. Half of the parents discontinued or changed vaccination practices, and this was associated with a belief that vaccines contributed to autism spectrum disorders, indicating a potential subset of undervaccinated children. Educational tools should be designed to assist physicians when talking to parents of children with autism spectrum disorders about vaccination.     

孤独症儿童父母的人格特征和神经认知功能

背景:儿童孤独症谱系障碍的日益增多和巨大的家庭负担引起了学术界和社会的关注.目的:研究孤独症儿童(ASD)父母的人格特征和神经认知功能,并与正常发育的孩子父母进行比较.方法:根据精神疾病诊断与统计手册第四版(DSM-IV),这项研究招募了41名符合孤独症谱系障碍诊断标准的中国孩子.对于他们79位亲生父母均采用艾森克个性问卷(EPQ)和一套神经心理学测试来进行评估.正常对照组是由80名发育良好的儿童组成,年龄、性别相匹配.结果:留学生较中国学生更经常地使用"积极重新关注"和"我们发现孤独症儿童的父母在P量表中EPQ得分显著高于发育良好的孩子父母(t=1.68,p=0.039),而他们E量表和L量表的评分均显著较低(t=1.84,p=0.035;t=2.07,p=0.023).我们还确认了孤独症儿童的父母比正常对照花更长的时间来完成连线试验(TMT)A部分和B-M部分(t=1.57,p=0.013;t=0.83,p=0.019).结论:相对于发育良好的儿童父母,孤独症儿童的父母更偏向于漠不关心、死板、固执、内向、沉默.他们表现出较少的创新性和寻求刺激的行为,并且社会技能和成熟性有限.虽然孤独症儿童的父母的一般认知功能,包括智商在内,都比较完整,但是他们的计划性、灵活性和视觉处理功能是有损伤的.     

An evaluation of school involvement and satisfaction of parents of children with autism spectrum disorders

Parental school involvement and satisfaction are unstudied in families raising a child with an autism spectrum disorder (ASD). To fill this gap, the current study utilized a national sample of families (N = 8,978) from the 2007 Parent and Family Involvement in Education survey ( U.S. Department of Education, National Center for Education Statistics, 2006-2007 ). Parents of children with ASDs were found to be more likely than parents of children without the disorder to attend parent-teacher conferences, meet with school guidance counselors, and help with homework. Parents of children with ASD were also more dissatisfied with the level of communication provided by the school. There was a significant positive correlation between parental school involvement and parental school satisfaction. These findings have important implications for how schools interact with families with children with ASD.     

The Medical Home for Children with Autism Spectrum Disorders: Parent and Pediatrician Perspectives

This qualitative study examines differences between perceptions of parents and pediatricians regarding the needs of children with autism spectrum disorders (ASDs) and their families within the medical home. Two separate focus groups of parents of children with ASDs and pediatricians were conducted. Parents and pediatricians identify unmet needs within medical homes of children with ASDs. Parents perceived that physicians did not act early upon their concerns about development, and that care is less comprehensive, coordinated and family-centered than desired. Pediatricians desire to improve services but cite lack of time, training and resources as barriers. Medical homes for children with ASDs would benefit from better pediatrician ASD education and medical systems that support extended visits, care coordination and interdisciplinary collaboration.     

A phenomenological content analysis of online support seeking by siblings of people with autism

With the sharp increase in diagnosis rates of autism spectrum disorder, more family members are caring for and being raised with individuals with autism. Although research has examined parents’ experiences of raising a child with autism, more knowledge is needed regarding neuro-typical siblings’ experiences. One way to understand siblings’ experiences is to hear their own recollections as shared through online peer forums. The purpose of this phenomenological content analysis was to understand the unfiltered experiences of neuro-typical adults who grew up with a sibling with autism spectrum disorder as they sought support online. Secondary analysis of online blog posts generated four themes: Unique family relationships; Complex spectrum of emotional experiences; Autism influencing life trajectories; A spectrum of coping strategies. Results provide useful implications for professionals working with these families and for researchers studying autism.     

Assessing need in school-aged children with an autism spectrum disorder

The assessment of support needs of children with an autism spectrum disorder and their families has been hindered by the ambiguity surrounding the definition of need and the lack of a conceptual framework to guide investigations. This paper examines two major approaches to measuring need and discusses their appropriateness for use in autism. We focus on school-aged children, because of the relative lack of research in this area and the challenges of measuring need in children with an autism spectrum disorder in this age group. A conceptual framework, which explores parents’ perceived need, is proposed. We suggest that the child's adaptive skills and challenging behaviors will be important in predicting the extent of the parent's perceived unmet need.     

Rate of head circumference growth as a function of autism diagnosis and history of autistic regression

Several reports indicate that autism spectrum disorder is associated with increased rate of head growth in early childhood. Increased rate of growth may index aberrant processes during early development, may precede the onset of symptoms, and may predict severity of the disease course. We examined rate of change in occipitofrontal circumference measurements (abstracted from medical records) in 28 boys with autism spectrum disorder and in 8 boys with developmental delay without autism from birth to age 36 months. Only children who had more than 3 occipitofrontal circumference measurements available during this age period were included. All data were converted to z scores based on the Centers for Disease Control and Prevention norms. Rate of growth from birth to age 36 months was statistically significantly higher for the autism spectrum disorder group than the developmental delay group, with children with autism spectrum disorder showing a statistically significant increase in occipitofrontal circumference relative to norms between 7 and 10 months; this group difference in rate of growth was more robust when height was used as a covariate. Rate of growth was not found to be different for children with autism spectrum disorder whose parents reported a history of loss of skills (regression) vs those whose parents reported early onset of autism symptoms. Findings from this study suggest that the aberrant growth is present in the first year of life and precedes the onset and diagnosis in children with autism spectrum disorder with and without a history of autistic regression.     

Quality of the information on educational and therapy interventions provided on the web sites of national autism associations

Parents and teachers of children with autism spectrum disorders (ASD) are often presented with a confusing array of intervention options that vary considerably in their level of research support. Logical sources of information and guidance are the web sites of national autism associations. This research examined the quality of the information that is available on the web sites of national autism associations with regard to educational and therapy interventions. Rankings derived from current research evidence on interventions were compared with those available on web sites to determine whether or not this information was consistent with current research evidence and the stated aims of the organisations. Overall, these sites provided limited guidance for parents and teachers with regard to the selection of research-based interventions. Several options to improve the information available are discussed.     

Externalizing Behaviors are Associated with Increased Parenting Stress in Caregivers of Young Children with Autism

Journal of Autism and Developmental Disorders - Parents of children diagnosed with autism spectrum disorder (ASD) report higher levels of stress than parents of typically developing children. Few...     

Respite Care, Marital Quality, and Stress in Parents of Children with Autism Spectrum Disorders

Parents of children with autism spectrum disorders (ASD) are at risk for having higher stress and lower marital quality than other parents. Survey data regarding respite care, marital quality, and daily hassles and uplifts were obtained from 101 mother-father dyads who were together raising at least one child with ASD (total # of children = 118). Number of hours of respite care was positively related to improved marital quality for both husbands and wives, such that a 1-h increase in weekly respite care was associated with a one-half standard deviation increase in marital quality. This relationship was significantly mediated by perceived daily stresses and uplifts in both husbands and wives. More respite care was associated with increased uplifts and reduced stress; increased uplifts were associated with improved marital quality; and more stress was associated with reduced marital quality. The number of children in the family was associated with greater stress, and reduced relational quality and daily uplifts. Results suggest policymakers and practitioners should develop supports for providing respite for families raising children with ASD.     

Self-esteem,social support,and life satisfaction in Chinese parents of children with autism spectrum disorder

PurposeThe current study examined self-esteem, social support, and life satisfaction in Chinese parents of children with autism spectrum disorder (ASD), and observed the mediation effects of social support on the relationship between self-esteem and life satisfaction.MethodsWe compared 118 Chinese parents of children with ASD to 122 demographic-matched parents of typically developing children on measures of self-esteem, social support, and life satisfaction using the Rosenberg Self-Esteem Scale (SES), Multidimensional Scale of Perceived Social Support (MSPSS), and Satisfaction with Life Scale (SWLS), respectively.ResultsParents of children with ASD scored significantly lower on self-esteem, social support, and life satisfaction than the controls (ps < 0.01), and social support partly mediated the relationship between self-esteem and life satisfaction in both groups. Hierarchical regressions indicated that after controlling for demographic variables, social support and self-esteem were significant predictors of life satisfaction in both groups but explained more variance in life satisfaction for the parents of children with ASD.ConclusionsSocial support and self-esteem play a more important role in life satisfaction for parents of children with ASD than those of typically developing children. Life satisfaction is positively related to higher household income, higher self-esteem, and stronger social support for parents. Self-esteem is likely to be associated with greater life satisfaction by means of greater social support. Future research and interventions should focus on fostering a more positive climate of social support for ASD families in China.     

Clinical neurofeedback: case studies, proposed mechanism, and implications for pediatric neurology practice

Trends in alternative medicine use by American health care consumers are rising substantially. Extensive literature exists reporting on the effectiveness of neurofeedback in the treatment of autism, closed head injury, insomnia, migraine, depression, attention deficit hyperactivity disorder, epilepsy, and posttraumatic stress disorder. We speculated that neurofeedback might serve as a therapeutic modality for patients with medically refractory neurological disorders and have begun referring patients to train with clinical neurofeedback practitioners. The modality is not always covered by insurance. Confident their child's medical and neurological needs would continue to be met, the parents of 3 children with epilepsy spectrum disorder decided to have their child train in the modality. The children's individual progress following neurofeedback are each presented here. A proposed mechanism and practice implications are discussed.     

Parental Reaction to Early Diagnosis of Their Children’s Autism Spectrum Disorder: An Exploratory Study

This study explores parental reactions subsequent to receiving their child’s autism spectrum disorder (ASD)-diagnosis. Seventy seven parents of recently diagnosed children participated in the Reaction to Diagnosis Interview. Within this group, associations between parental reaction to diagnosis, parental and child characteristics and prediagnostic circumstances were analysed. In a sub-sample, the stability of reaction to diagnosis was examined. The majority of parents were classified as ‘resolved’ regarding their child’s diagnosis. Conversely, parents of children with more severe ASD symptoms or non-Dutch parents were more likely to be classified as ‘unresolved’. Sub-sample analysis revealed stability of reaction to ASD-diagnosis. The majority of parents adapted well to the circumstances and the care for their child. Autism severity and parental nationality were significant factors affecting parental reactions. Thus, early identification of parental reaction to children’s ASD-diagnosis may aid in providing more tailored parental support programs.     

Evaluation of an online training program to improve family routines,parental well-being,and the behavior of children with autism

BackgroundParents of children with autism spectrum disorder (ASD) are at an increased risk for stress, and their children often display high rates of problem behavior. There is a robust literature base showing that training parents to implement applied behavior analytic (ABA) interventions helps reduce their child’s challenging behavior. However, some parents continue to report high rates of stress that may interfere with implementation. Adding cognitive-affective strategies such as ACT and optimism training to ABA may be beneficial. Telehealth models have the potential to reach parents who may not otherwise be able to access parent training, making evidence-based programs more readily available.MethodTwenty-three parents (with 16 completing posttest assessments) of children with autism (ages four to eight) participated in a three-week online training program. Topics covered included instruction in ABA principles as well as stress reduction strategies and mediation practice based on ACT principles. The intervention included weekly synchronous online meetings with other parents and two parent educators, as well as supplemental assignments completed between sessions.ResultsWe found that after the intervention parents reported: (1) decreases in parental stress, (2) increases in relevant knowledge, (3) increases in child prosocial behavior, (4) decreases in hyperactive behaviors, and (5) high levels of satisfaction with the intervention.ConclusionsThis online program, combining ABA and stress reduction practices, resulted in positive outcomes for children with autism and their families. Although this was a small sample size, this early investigation offers promise for delivering this combined intervention approach effectively online. Training small groups of parents in an online format may be a feasible, efficient service delivery method.     

Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders

Diagnosis of Autism Spectrum Disorders (ASD) is complex and parents worldwide often experience difficulties and frustration during the diagnostic process. This study examined the duration of the diagnostic period, the number of professionals consulted, the relationship with the professional(s) and the perceived helpfulness of information provided in relation to how they impact on parental satisfaction and stress during the diagnostic process. The study also obtained professional perspectives regarding current diagnostic practices to understand aspects of the process which may be helpful in increasing professional confidence in diagnosing ASD. One hundred and two parents of 2-17 years old children and young people with ASD recruited from ASD special schools, intervention centres and hospitals in Singapore completed a survey, which included information on various aspects of the diagnostic process and measures of autism severity, parental stress and satisfaction. Seventeen professionals completed a similar survey. Parents from higher educational and socioeconomic backgrounds were more likely to raise concerns about their child's development at an earlier age. Higher parental stress was associated with more professionals consulted and lower perceived collaboration with professionals. Higher parental satisfaction was associated with higher perceived collaboration with professionals, higher perceived helpfulness of received information, lower severity of child ASD symptoms and lower levels of stress. Findings are discussed in relation to clinical practice guidelines and existing literature on the process and impact of diagnosis on families.     

Autism spectrum disorders in children with a history of infantile spasms: a population-based study

The objective of this article is to describe autistic spectrum disorders in children diagnosed with infantile spasms in the first year of life. The source of data was the records of all 3 pediatric departments in Iceland. Twenty children born between 1981 and 1998 who had infantile spasms were invited to participate. When appropriate, the parents of these children were asked to complete the Social Communication Questionnaire. Children scoring 10 points or higher on the questionnaire were selected for further examination using the Autism Diagnostic Interview- Revised and either the Autism Diagnostic Observation Schedule or the Childhood Autism Rating Scale. All participants were given appropriate cognitive tests or measures of adaptive behavior. The parents of 17 children (10 boys, 7 girls) agreed to participate in the study. Age at assessment ranged from 5 to 19 years with a mean age of 11 years and 6 months. Fourteen children had at least one neurodevelopmental disorder. Six (6/17), or 35.3%, were diagnosed with autism spectrum disorder (3 boys, 3 girls), five of these had a history of symptomatic infantile spasms, and four were profoundly mentally retarded (IQ/DQ<20). If the diagnosis of autism spectrum disorder was restricted to children with a developmental age of 24 months or more (3 cases), the prevalence was 17.6%. The estimates found in this study exceed the estimated prevalence of autism spectrum disorder in the general population.     

Evidence-based neuroethics for neurodevelopmental disorders

Many neurodevelopmental disorders affect early brain development in ways that are still poorly understood; yet, these disorders can place an enormous toll on patients, families, and society as a whole and affect all aspects of daily living for patients and their families. We describe a pragmatic, evidence-based framework for engaging in empiric ethics inquiry for a large consortium of researchers in neurodevelopmental disorders and provide relevant case studies of pragmatic neuroethics. The 3 neurodevelopmental disorders that are at the focus of our research, cerebral palsy (CP), autism spectrum disorder (ASD), and fetal alcohol spectrum disorder (FASD), bring unique and intersecting challenges of translating ethically research into clinical care for children and neonates. We identify and discuss challenges related to health care delivery in CP; neonatal neurological decision making; alternative therapies; and identity, integrity, and personhood.     

Israeli children with autism spectrum disorder are not macrocephalic

The prevalence of macrocephaly in autism spectrum disorder is reported to be much higher than in the general population, 12% to 37%. Progressive macrocephaly is even considered a warning sign for the development of autism. We evaluated the prevalence of an abnormal head circumference in children with autism in Israel and compared it with the head circumferences of children with developmental language disorder and children with normal development. We did not find a higher prevalence of macrocephaly among Israeli children with autism spectrum disorder (4.4%). Although children with autism spectrum disorder had a significantly higher rate of a head circumference above the 75th percentile compared with children with developmental language disorder, it was not significantly different compared with normal controls. We conclude that there is no increased prevalence of macrocephaly in Israeli children with autism; this can be attributed to a different genetic background.