Quality of life for parents of children with autism spectrum disorders

This project describes health-related quality of life (HRQoL) of parents of children with autism spectrum disorders (ASDs) using mixed methods. Parents of children with ASDs (N = 224) reported on their HRQoL, depression, and caregiving burden using quantitative tools. HRQoL scores were slightly worse than from those in normative populations especially related to stress and mental health. For example, parents reported average HRQoL scores from SF-6D of 0.74, which was clinically significant lower than an average normative U.S. population. 40% of parents reported having clinical depression symptoms. Married parents reported lower depression symptoms than parents who were not. In addition, families with three or more children with special health care needs (CSHCN) reported lower HRQL and higher caregiving burden than families with less CSHCN. In the qualitative study, we conducted five focus groups to gain insight as to the reasons a child's ASD might influence a parent's HRQoL. Qualitative data further supports the notion that parental HRQoL was negatively influenced by their child's ASDs. Studies that seek to quantify the influence of ASDs and to assess the effect of interventions for children with ASDs may consider measuring the effects on family members as well.     

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.     

Factors associated with depressive symptoms in parents of children with autism spectrum disorders

Parents of children with autism spectrum disorders (ASDs) have higher rates of depressive symptoms than parents of typically developing (TD) children or parents of children with other developmental disorders. The purpose of this study was to examine child and parent sleep as factors associated with depressive symptoms in parents of children with ASDs. Participants included 34 families (17 ASD, 17 TD, 17 mothers and 11 fathers per group). Both objective sleep quantity (actigraphy) and subjective sleep quality were obtained, along with measures of parent depressive symptoms and child daytime behavior. Child sleep quantity was a significant predictor of maternal depressive symptoms, controlling for group and child behavior. Fathers sleep quality was a significant predictor of paternal depressive symptoms, controlling for child behavior and child sleep disturbances. This study suggests that along with child behavior, parent and child sleep variables are associated with parental depressive symptoms. Future studies should continue to use a multi-method measurement approach for sleep, and interventions that target child sleep should include parent sleep and parent daytime functioning as outcome variables.     

The intervention priorities of parents of children with autism spectrum disorders in Iran

When designing and implementing evidence-based programs for children with an autism spectrum disorder, the intervention priorities of parents are important criteria. Although studies in developed countries have explored parents’ intervention priorities, there is a paucity of this kind of research in developing countries. This research explores the intervention priorities of 207 Iranian parents for their children with autism in Tehran, the capital of Iran. Participants with children between 2 to 21 years of age were asked to rate their intervention priorities from among 10 main categories. In addition, correlations between children’s difficulties and parental intervention priorities were examined.The results indicate that building social communication skills was the highest intervention priority for parents of Iranian children with autism, a contrast to typical current service provision in Iran. The results also substantiated that presence of social communication difficulties and challenging behaviors in children are typically correlated with parents' intervention priorities.     

Sleep in children with autism spectrum disorders

The amount of research conducted on sleep in children and adolescents has increased dramatically over the past decade due to the recognition that many children have significant sleep problems leading to daytime dysfunction. Approximately one third of typically developing children have sleep difficulties at some point, and a similar percentage of adolescents have impaired or insufficient sleep leading to daytime impairments. Sleep problems are known to occur at even greater rates in children with special needs, such as those with developmental disabilities, psychiatric conditions, and medical illnesses. The recognition that interventions can improve sleep and may result in better daytime functioning has fueled a growing interest in more fully characterizing the sleep problems in children with special needs. This article presents a discussion of the sleep problems experienced by children with one particular group of developmental disorders—the autism spectrum disorders.     

Macrocephaly in children with autism spectrum disorders

Research indicates the presence of macrocephaly or abnormally large head circumferences in children with autism and spectrum-related disorders, compared with their typically developing peers. Previous research, however, centered on non-nationally representative, clinic-based samples of children and adults with autism spectrum disorders. Moreover, these samples were typically small. The present study represents results of a nationally representative, community-based sample of children with and without autism spectrum disorders, derived from the Early Childhood Longitudinal Study Birth Cohort. Results reveal statistically nonsignificant differences in the head circumferences of children with autism spectrum disorders across three time points, compared with children without autism spectrum disorders. These results may be considered highly generalizable, because they are derived from a nationally representative, community-based sample of children with and without autism spectrum disorders from the Early Childhood Longitudinal Study Birth Cohort.     

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.     

An exploration of concomitant psychiatric disorders in children with autism spectrum disorder

ObjectiveWe explored patterns of concomitant psychiatric disorders in a large sample of treatment-seeking children and adolescents with autism spectrum disorder (ASD).MethodsParticipants were 658 children with ASD (age 3–17 years; mean = 7.2 years) in one of six federally-funded multisite randomized clinical trials (RCT) between 1999 and 2014. All children were referred for hyperactivity or irritability. Study designs varied, but all used the Child and Adolescent Symptom Inventory or Early Childhood Inventory to assess Attention Deficit Hyperactivity Disorder (ADHD), Oppositional-Defiant Disorder (ODD), Conduct Disorder (CD), Anxiety Disorders, and Mood Disorders. In addition, several measures in common were used to assess demographic and clinical characteristics.ResultsOf the 658 children, 73% were Caucasian and 59% had an IQ >70. The rates of concomitant disorders across studies were: ADHD 81%, ODD 46%, CD 12%, any anxiety disorder 42%, and any mood disorder 8%. Two or more psychiatric disorders were identified in 66% of the sample. Of those who met criteria for ADHD, 50% also met criteria for ODD and 46% for any anxiety disorder. Associations between types of concomitant disorders and a number of demographic and clinical characteristics are presented.ConclusionIn this well-characterized sample of treatment-seeking children with ASD, rates of concomitant psychiatric disorders were high and the presence of two or more co-occurring disorders was common. Findings highlight the importance of improving diagnostic practice in ASD and understanding possible mechanisms of comorbidity.     

Parenting behaviour among parents of children with autism spectrum disorder

Contrary to the extensive amount of empirical findings about parental perceptions, parenting cognitions, and coping in families with a child with autism spectrum disorder (ASD), research about parenting itself is very scarce. A first goal of this study was to examine the factor structure and internal consistency of two scales to measure parenting behaviour: the Parental Behaviour Scale-short version (PBS, Van Leeuwen, 2002, Van Leeuwen and Vermulst, 2004, Van Leeuwen and Vermulst, 2010) and a new scale to measure parenting behaviours more specifically relevant to children with ASD. A second goal was to compare general and more specific parenting behaviour among parents of children with and without ASD. The participants were 305 parents of a child with ASD between 8 and 18 years old and 325 parents of a typically developing child between 8 and 18 years old. Parents completed both scales. Exploratory factor analysis of the new scale resulted in two factors: Stimulating the Development and Adapting the Environment. Multisample confirmatory factor analyses showed good fit indices for the noninvariant model of both the PBS and the new scale. Mean level analyses revealed significant main effects of group with higher mean scores for the control group in comparison with the experimental group for the subscale Harsh Punishment and the reversed effect for the subscale Stimulating the Development. We concluded that it is possible to use the parenting constructs of the PBS-short version to investigate parenting behaviour of parents with and without children with ASD. Furthermore, the new scale showed a relatively stable two factor structure for the control group as well as for the experimental group. The two factors ‘Stimulating the child's Development’ and ‘Adapting the child's Environment’ were also convincing as regards content. A first indication was found that parents of children with ASD indeed use more specifically relevant parenting behaviours. It is self-evident that more research is needed to gain further insight into the nature of these behaviours.     

An evaluation of Miranda rights and interrogation in autism spectrum disorders

The primary deficits present in autism spectrum disorders (ASD) may lead to increased susceptibility to involvement in the criminal justice system. The same deficits may also cause individuals with ASD to be more vulnerable to interrogation techniques and other aspects of the legal system. Due to the increased level of vulnerability as well as impairments in social cognition, individuals with ASD may have difficulty understanding their legal rights, more specifically their Miranda rights. This review explores Miranda comprehension in general and how the specific deficits found in ASD may impact Miranda comprehension.     

Electroencephalographic studies in children with autism spectrum disorders

An important factor in the diagnosis and treatment of Autism spectrum disorder (ASD) is prescribed Electroencephalography (EEG). EEG changes may show the following: slowing, asymmetry, sharp waves or spikes, sharp and slow waves, generalized sharp and slow waves, or generalized polyspikes in a distributed or general area, multifocal or focal, unilateral or bilateral, and they may be located in many different areas of the brain. There is a need to look for a EEG phenotype typical of patients with ASD. The importance of gamma waves, rhythm mu, mirror neurons, and their role in patients with ASD was discussed. Epilepsy is reported to occur in one third of ASD patients. In ASD, seizures and EEG paroxysmal abnormalities could represent an epiphenomenon of a cerebral dysfunction independent of apparent lesions. This article reviews ASD and EEG abnormalities and discusses the interaction between epileptiform abnormalities and cognitive dysfunction.     

Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders

Although no Canadian studies have been conducted, studies suggest parents of children with autism experience difficulties obtaining a diagnosis for their child. Fifty-six parents of children with autism completed three questionnaires providing information on the families' demographics, parents' experiences throughout the diagnostic process, and their child's autistic symptomatology. These parents experienced significant difficulties obtaining a diagnosis for their child. Parents saw an average of 4.5 professionals, and waited almost 3 years to receive a diagnosis following their first visit to a professional regarding their child's development. The impact of autistic symptomatology on the diagnostic process is discussed.     

Medication use among children with autism spectrum disorders

The study characterizes the use of psychoactive medications among children and youth with autism-spectrum disorders over the course of a calendar year. Eighty-three percent of the sample had at least one drug claim during the year. Prescribed drugs came from 125 different therapeutic classes. The seven most frequently prescribed classes of psychoactive drugs were antidepressants, stimulants, tranquilizers/antipsychotics, anticonvulsants, hypotensive agents, anxiolytic/sedative/hypnotics, and benzodiazepines. The data on other relevant diagnoses indicate that children and youth are frequently treated with medication under an autism-spectrum diagnosis, even though the target symptoms may be commonly associated with other mental disorders. Age data indicate that about 70% of children with autism-spectrum disorders age 8 yr and up receive some form of psychoactive medication in a given year.     

Understanding macrographia in children with autism spectrum disorders

It has been consistently reported that children with autism spectrum disorders (ASD) show considerable handwriting difficulties, specifically relating to accurate and consistent letter formation, and maintaining appropriate letter size. The aim of this study was to investigate the underlying factors that contribute to these difficulties, specifically relating to motor control. We examined the integrity of fundamental handwriting movements and contributions of neuromotor noise in 26 children with ASD aged 8–13 years (IQ > 75), and 17 typically developing controls. Children wrote a series of four cursive letter l's using a graphics tablet and stylus. Children with ASD had significantly larger stroke height and width, more variable movement trajectory, and higher movement velocities. The absolute level of neuromotor noise in the velocity profiles, as measured by power spectral density analysis, was significantly higher in children with ASD; relatively higher neuromotor noise was found in bands >3 Hz. Our findings suggest that significant instability of fundamental handwriting movements, in combination with atypical biomechanical strategies, contribute to larger and less consistent handwriting in children with ASD.     

Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support groups

Many parents of children with autism spectrum disorders (ASD) participate in support groups, but very few studies have explored their motives to do so. The present study aims to explore the self-reported needs and expectations that parents express according to their gender and education and according to the age and gender of their child with ASD. The 299 parents (72 fathers and 227 mothers) of children who were diagnosed with ASD were aged from 27 to 60 years old (with mean age = 46 years and 8 months). They were asked to complete an anonymous open-ended questionnaire during one of their support group's meetings. The self-reported needs and expectations that parents expressed differed significantly according to their gender and education, as well as the age and gender of their child with ASD. These findings should be taken into consideration when organising and running support groups for parents of children with ASD.     

Efficacy of ABRACADABRA literacy instruction in a school setting for children with autism spectrum disorders

BackgroundThere is evidence indicating that instruction using ABRACADABRA (ABRA) – a free web application designed to promote literacy development – may benefit children with autism spectrum disorders (ASD) when administered on an individualized basis in children’s homes.AimsHere, we investigated the efficacy of ABRA instruction administered in small groups of children with ASD within a school setting.Methods and proceduresChildren were aged 5.83–8.42 years (n = 23). Some children were assigned to an instruction group and received a minimum of 20 h of ABRA instruction over 9 weeks (n = 11). The other children comprised an age- and ability-matched control group (n = 12) and received business as usual literacy instruction. Outcome measures included word-level accuracy, passage-level accuracy, and passage-level comprehension, all assessed using standardized tests that were independent of ABRA.Outcomes and resultsANOVAs comparing pre- versus post-instruction raw scores showed statistically significant improvements in word- and passage-level reading accuracy for the instruction group relative to the control group, with large effect sizes. Gains in reading comprehension for the instruction group were not statistically significant and, in a posthoc correlational analysis, appeared to be related to children’s socialisation skills (r = .62).Conclusions and implicationsLiteracy instruction using ABRA is associated with improvement in reading accuracy for children with ASD when administered in small groups within a school setting. Children with ASD may require additional supports to make gains in reading comprehension when literacy instruction using ABRA is delivered in groups.     

Use of clonidine in children with autism spectrum disorders

Children with autism spectrum disorders (ASD) often exhibit sleep and behavioral disorders. Treatment of sleep disorders can be difficult in these children. Clonidine, an alpha2-adrenergic receptor agonist, has been shown to be effective in reducing impulsivity, inattention, and hyperactivity, as well as in serving as a sedative for medial procedures. An open labeled retrospective study of clonidine in treatment of insomnia, and/or hyperactivity, inattention, mood disorder, and aggressive behaviors was conducted using parent reports of sleep initiation and maintenance, as well as behaviors prior and during clonidine treatment. Clonidine was effective in reducing sleep initiation latency and night awakening, to a less degree in improving attention deficits hyperactivity, mood instability and aggressiveness in this cohort of 19 children with ASD. The side effects were largely tolerable. Further evaluation with placebo-controlled double-blind clinical trial of clonidine use in ASD will provide more insight into the clinical efficacy and safety of the medicine in ASD.     

Use of complementary and alternative medicine (CAM) treatments by parents of children with autism spectrum disorders

Parents of children with autism spectrum disorders (ASDs) may elect to use complementary and alternative medicine (CAM) treatments with their children in place of, or in addition to, conventional treatments. CAM treatments are controversial and understudied and, for most, the efficacy has not been established. The current study (n = 248) examined reports (via an internet survey) from parents of children with an ASD, asking of CAM usage, recommendation sources, expectations, costs, parent-rated assessments of efficacy, and reasons for stopping use of CAMs. Over 70% had tried at least one CAM treatment with their child, and about half were currently using one or more CAMs. Parents entered treatment with high expectations, although they varied considerably in their assessment of whether CAMs helped their child. Odds ratios of parent-rated efficacy give small leaning toward improvement over non-improvement for CAM treatments. The findings highlight the need for methodologically sound research on CAM treatments. Also needed is dissemination about treatment efficacy to help parents and professionals make educated judgments regarding both CAM and routine interventions.     

Melatonin for insomnia in children with autism spectrum disorders

We describe our experience in using melatonin to treat insomnia, a common sleep concern, in children with autism spectrum disorders. One hundred seven children (2-18 years of age) with a confirmed diagnosis of autism spectrum disorders who received melatonin were identified by reviewing the electronic medical records of a single pediatrician. All parents were counseled on sleep hygiene techniques. Clinical response to melatonin, based on parental report, was categorized as (1) sleep no longer a concern, (2) improved sleep but continued parental concerns, (3) sleep continues to be a major concern, and (4) worsened sleep. The melatonin dose varied from 0.75 to 6 mg. After initiation of melatonin, parents of 27 children (25%) no longer reported sleep concerns at follow-up visits. Parents of 64 children (60%) reported improved sleep, although continued to have concerns regarding sleep. Parents of 14 children (13%) continued to report sleep problems as a major concern, with only 1 child having worse sleep after starting melatonin (1%), and 1 child having undetermined response (1%). Only 3 children had mild side-effects after starting melatonin, which included morning sleepiness and increased enuresis. There was no reported increase in seizures after starting melatonin in children with pre-existing epilepsy and no new-onset seizures. The majority of children were taking psychotropic medications. Melatonin appears to be a safe and well-tolerated treatment for insomnia in children with autism spectrum disorders. Controlled trials to determine efficacy appear warranted.     

Mood symptoms in children and adolescents with autism spectrum disorders

Asperger Syndrome (AS) and High Functioning Autism (HFA) are psychiatric conditions belonging to the Autistic Spectrum Disorders (ASDs), characterized by social dysfunction and focused interest, in the absence of mental retardation. Previous reports suggest that AS/HFA may be associated with important psychiatric comorbidities. Among the psychiatric internalizing disorders, depression and anxiety are probably the most common disorders. The aim of this study is to evaluate the prevalence of mood disorders and identifying peculiar clinical features in subjects suffering from AS and HFA. 30 male patients with AS/HFA, 30 male patients affected by Major Depression (MD) and 35 male Typically Developing (TD) comparison were assessed with the CDI and the CDRS-R. Participants’ parents were invited to complete the CBCL and the P-YMRS. Moreover, the CGAS was rated by the clinicians. The evaluation of depressive symptoms showed that AS/HFA group reported higher depressive symptoms, as showed by CDI total, CBCL internalizing and CDRS-R total, compared to the TD group. No significant difference of depressive symptoms was found between the AS/HFA and the MD group, with the exception of CDRS-R total score. Moreover, linear regression analysis in the AS/HFA group between CGAS and depressive symptoms revealed that a higher level of depressive symptoms increased the risk of poorer global functioning. These results suggest that the depressive symptoms in AS/HFA patients may be associated with poorer global functioning, with a consequent impairment in their psychological profile and social adjustment, and should alert clinicians to the importance of assessing mood disorders in order to choose the appropriate treatment.