Parental Stress and Quality of Life in Parents of Young Children with Autism.

Parents of children with ASD are at risk for chronic stress due to challenging parenting. It is unknown whether stress is already present in early parenthood, similar for mothers and fathers and if this impacts quality of life (QoL). Parental stress and QoL were assessed in 56 mothers and 51 fathers of young children (aged 3 to 7) with autism. Associations between parental stress (OBVL) and QoL (WHOQoL-BREF) were examined. Parents of young children with ASD appear to have high parental stress from conflicting feelings towards their child and from difficulties with parenting. Mothers have higher stress from feeling confined in their motherly role than fathers compared to the OBVL norm population. Both mothers and fathers have a low QoL. Increased maternal conflicting feelings towards the child associated with lower psychological QoL, while high maternal feelings of role confinement associated with low physical QoL. Increased paternal conflicting feelings towards their child related to lower physical and social QoL, while fathers with more parenting difficulties reported less satisfaction with their psychological and environmental wellbeing. Thus, already at young age, parenting children with ASD is a major challenge for both mothers and fathers.

Effectivity of Play-Based Interventions in Children with Autism Spectrum Disorder and Their Parents: A Systematic Review.

Evidence of the effectivity of play-based interventions in children with autism spectrum disorder (ASD) was evaluated by PRISMA-based literature study and a Risk of Bias (RoB) assessment. Many of the 32 eligible randomized controlled trials (RCT) reported improved social interaction, communication, daily functioning and play behaviour. They also reported decreased problem behaviour, better parental attunement and parent-child interaction. We assessed 25/32 of the RCTs with high RoB, mainly related to homogeneity of the study population, lack of power, and performance bias. We concluded with due care that the effectivity of play-based interventions differed across RCTs, most reported improvements are found in ASD symptoms, everyday functioning, and parental attunement. In future research, findings should be replicated, taking account of the RoB.

The role of food selectivity in the association between child autistic traits and constipation.

OBJECTIVE: This study examines the association between child autistic traits and constipation symptoms, and explores whether this association is mediated by food selectivity. METHOD: The sample included participants (N = 2,818) from the population-based birth cohort, Generation R (Rotterdam, the Netherlands). Parents reported their child's autistic traits at 6 years (using the Social Responsiveness Scale), food selectivity at 10 years (using the Stanford Feeding Questionnaire) and the frequency and severity of constipation symptoms they experienced at 10 years (using the ROME III functional constipation diagnostic criteria). Mediation analyses tested mediation through food selectivity in the association of autistic traits and the number of constipation symptoms, adjusting for covariates. RESULTS: There was a positive association between parent-reported child autistic traits and constipation symptoms (r = 0.08, p < .001). We identified a significant indirect effect of autistic traits on constipation symptoms through food selectivity (ß = 0.008, 95% Confidence Interval: 0.002, 0.014). DISCUSSION: This study provides empirical support for the mediating role of food selectivity in the association between autistic traits and constipation. Behavioral interventions aimed to target food selectivity and support families of children with autistic traits may bolster conventional medical and nutritional treatments to alleviate gastrointestinal symptoms like constipation.

Autism Spectrum Disorder Alertness in Dutch Youth and Family Center Physicians: Effects of a Live Online Educational Program.

We investigated the effect of a live online educational program in 93 Dutch Youth and Family Center (YFC) physicians who were screening for Autism Spectrum Disorder (ASD) in the general child population. The educational program raised the physicians' level of specific ASD knowledge and it remained higher at six months follow-up (p < .01). Their self-confidence in detecting ASD was also higher and maintained at follow-up (p < .01). The educational program had no effect on the physicians' stigmatizing attitudes toward mental illness nor on the number of potential ASD referrals in children of 4-6 years of age. In conclusion, the online educational program on early detection of ASD has a six month long effect on YFC physicians' level of ASD knowledge and self-confidence.

Do early-life eating habits predict later autistic traits? Results from a population-based study.

Eating problems are common among children with Autism Spectrum Disorder (ASD), but it is unknown to what extent infant eating behavior is associated with later autistic traits. As eating behavior is currently not included in ASD screening instruments, it is important to evaluate whether infant eating behavior predicts later autistic traits and might therefore be used to enhance the early detection of ASD. We investigated the association of breastfeeding and eating behavior during infancy with later autistic traits in the population-based Generation R cohort. We included 3546 mother-child dyads with maternal reports on feeding and eating at age two months and autistic traits at six years. Eating behavior was assessed with seven items on specific eating habits and the Social Responsiveness Scale was used to evaluate autistic traits. Covariates included child sex, and maternal psychopathology and autistic traits. Linear regression analyses showed that being formula fed at two months was associated with a higher autistic trait score at six years (adjusted B = 0.07; 95% CI: 0.00-0.14). Children who were drinking only small quantities (adjusted B = 0.17, 95% CI: 0.04-0.30) and were hungry/not satisfied (adjusted B = 0.23, 95% CI: 0.08-0.39) at age two months also had a higher autistic traits score at age six years. We found no interactions with sex or breastfeeding. This study shows that eating behavior during infancy is related with autistic traits in childhood. Although the associations were fairly small, these findings suggest that early-life eating problems might be relevant for early detection of ASD and a potential addition to ASD-specific screening instruments.

Novel Insights into Autism Knowledge and Stigmatizing Attitudes Toward Mental Illness in Dutch Youth and Family Center Physicians.

Professionals' limited knowledge on mental health and their stigmatizing attitudes toward mental illness can delay the diagnosis of autism. We evaluated the knowledge on Autism Spectrum Disorder (ASD) and stigmatizing attitudes in 93 physicians at Dutch Youth and Family Centers (YFC). These physicians screen for psychiatric symptoms in children. We show that their general ASD knowledge scored 7.1 (SD 1.2), but their specific ASD knowledge was only 5.7 (SD 1.7) (weighted means on 1-10 scale, 1 = least knowledge, 10 = most knowledge). Our physicians had positive attitudes toward mental illness (CAMI scores 2.18 (SD 0.33) to 2.22 (SD 0.40) on a 5-point Likert scale) but they had higher levels of stigmatizing attitudes than other Western healthcare professionals. Their levels were considerably lower than in non-Western professionals. We found no relations between ASD knowledge, stigmatizing attitudes and demographic variables. In conclusion, ASD knowledge and stigmatizing attitudes toward mental illness in Dutch YFC physicians require attention.

The sex-specific association between autistic traits and eating behavior in childhood: An exploratory study in the general population.

Children with Autism Spectrum Disorder (ASD) often exhibit problematic eating behaviors, an observation mostly based on male dominated, clinical ASD study samples. It is, however, important to evaluate both children with an ASD diagnosis and children with subclinical autistic traits as both often experience difficulties. Moreover, considering the suggestion of a possible girl-specific ASD phenotype, there is a need to determine whether autistic traits are related with problematic eating behaviors in girls as well. This study explores the sex-specific association between autism (both autistic traits and diagnosed ASD) and eating behavior in middle childhood in Generation R, a prospective population-based cohort from fetal life onwards. We collected parental reports of autistic traits at six years (Social Responsiveness Scale) and of eating behavior at ten years (Children's Eating Behaviour Questionnaire). In this cohort of 3559 children, autistic traits at six years were associated with more Picky Eating, Emotional Eating and Food Responsiveness in later childhood (e.g. adjusted B for Picky Eating = 0.07; 95% CI: 0.03, 0.11). Stratified analyses showed that in girls, autistic traits were associated with more Emotional Overeating and Emotional Undereating (e.g. adjusted B for Emotional Undereating = 0.12; 95% CI: 0.04, 0.20), while no associations were found for boys. Results comparing children with and without an ASD diagnosis in the cohort largely confirm these associations (e.g. in girls, adjusted B for Emotional Undereating = 0.72; 95% CI: 0.01, 1.42). Our results point to a sex-specific association between autism and eating behavior in middle childhood. Also, our study is the first study to show that autistic traits are associated with emotionally based eating problems in girls and possibly represent part of a girl-specific ASD phenotype.

Diagnosing autism spectrum disorder: who will get a DSM-5 diagnosis?

BACKGROUND: Introduction of proposed criteria for DSM-5 Autism Spectrum Disorder (ASD) has raised concerns that some individuals currently meeting diagnostic criteria for Pervasive Developmental Disorder (PDD; DSM-IV-TR/ICD-10) will not qualify for a diagnosis under the proposed changes. To date, reports of sensitivity and specificity of the new criteria have been inconsistent across studies. No study has yet considered how changes at the 'sub domain' level might affect overall sensitivity and specificity, and few have included individuals of different ages and ability levels. METHODS: A set of DSM-5 ASD algorithms were developed using items from the Diagnostic Interview for Social and Communication Disorders (DISCO). The number of items required for each DSM-5 subdomain was defined either according to criteria specified by DSM-5 (Initial Algorithm), a statistical approach (Youden J Algorithm), or to minimise the number of false positives while maximising sensitivity (Modified Algorithm). The algorithms were designed, tested and compared in two independent samples (Sample 1, N = 82; Sample 2, N = 115), while sensitivity was assessed across age and ability levels in an additional dataset of individuals with an ICD-10 PDD diagnosis (Sample 3, N = 190). RESULTS: Sensitivity was highest in the Initial Algorithm, which had the poorest specificity. Although Youden J had excellent specificity, sensitivity was significantly lower than in the Modified Algorithm, which had both good sensitivity and specificity. Relaxing the domain A rules improved sensitivity of the Youden J Algorithm, but it remained less sensitive than the Modified Algorithm. Moreover, this was the only algorithm with variable sensitivity across age. All versions of the algorithm performed well across ability level. CONCLUSIONS: This study demonstrates that good levels of both sensitivity and specificity can be achieved for a diagnostic algorithm adhering to the DSM-5 criteria that is suitable across age and ability level.

Language in low-functioning children with autistic disorder: differences between receptive and expressive skills and concurrent predictors of language.

Language profiles of children with autistic disorder and intellectual disability (n = 36) were significantly different from the comparison groups of children with intellectual disability (n = 26) and typically developing children (n = 34). The group low-functioning children with autistic disorder obtained a higher mean score on expressive than on receptive language, whereas both comparison groups showed the reverse pattern. Nonverbal mental age, joint attention, and symbolic understanding of pictures were analyzed in relation to concurrent receptive and expressive language abilities. In the group with autistic disorder and intellectual disability, symbol understanding and joint attention were most strongly related to language abilities. Nonverbal mental age was the most important predictor of language abilities in the comparison groups.

Evaluation of the criterion and convergent validity of the Diagnostic Interview for Social and Communication Disorders in young and low-functioning children.

The Diagnostic Interview for Social and Communication Disorders (DISCO; Wing, 2006) is a standardized, semi-structured and interviewer-based schedule for diagnosis of autism spectrum disorder (ASD). The objective of this study was to evaluate the criterion and convergent validity of the DISCO-11 ICD-10 algorithm in young and low-functioning children. The DISCO-11, Autism Diagnostic Observation Schedule (ADOS), and Social Communication Questionnaire (SCQ) were administered to a Dutch sample of 115 children comprising 52 children with ASD (both with and without intellectual disability), 26 children with intellectual disability (non-ASD), and 37 typically developing children. Results indicated high sensitivity and specificity for DISCO-11 classifications in differentiating ASD from non-ASD according to the clinical classification in children with mild intellectual disability or average intelligence. Among children with a moderate or severe intellectual disability the sensitivity was equally high, but the specificity was significantly lower. The agreement between DISCO-11 and ADOS classifications was substantial, between DISCO-11 and SCQ moderate. The correlations between raw scores of the DISCO and ADOS algorithm or SCQ were both high. In conclusion, the DISCO-11 differentiates accurately between autistic disorder and non-ASD in young children with an average intelligence or mild intellectual disability, but is over inclusive in the lower levels of intellectual disability.

Intentional communication in nonverbal and verbal low-functioning children with autism.

UNLABELLED: In this study we characterized profiles of communicative functions and forms of children with autism and intellectual disability (n=26), as compared to typically developing children (n=26) with a comparable nonverbal mental age (2-5 years). Videotapes of the Communication and Symbolic Behavior Scales - Developmental Profile were analyzed using a standardized observation scheme in which three main functions were distinguished: behavior regulation, social interaction, and joint attention. Different forms of communication were also investigated: gestures, vocalizations/verbalizations, and eye gaze. Results indicated that in typically developing children the proportion of communication for the purpose of joint attention was much higher than for behavior regulation, whereas in children with autism the opposite pattern was seen. Low-functioning nonverbal children with autism mainly communicated for behavior regulation and not or only rarely for declarative purposes. Generally, this subgroup used the least complex forms to communicate. Low-functioning verbal children with autism differed from typically developing children only in the rate, not in the proportion of communication for specific functions. Combinations of three different communicative forms were used by verbal children with autism less frequently than by typically developing children. LEARNING OUTCOMES: After reading this paper, readers should be able to: (1) describe early development of communicative functions, (2) explain differences in communication profiles with respect to form and function between verbal and nonverbal low-functioning children with autism and typically developing children matched on nonverbal mental age and (3) discuss clinical implications of the findings for communication interventions in verbal and nonverbal low-functioning children with autism.

Local information processing in adults with high functioning autism and asperger syndrome: the usefulness of neuropsychological tests and self-reports.

Local information processing in 42 adults with high functioning autism, 41 adults with Asperger syndrome and 41 neurotypical adults was examined. Contrary to our expectations, the disorder groups did not outperform the neurotypical group in the neuropsychological measures of local information processing. In line with our hypotheses, the self-reports did show higher levels of local information processing and a stronger tendency to use systemizing strategies in the two disorder groups. Absent and weak correlations were found between the self-reports and the two neuropsychological tasks in the three groups. The neuropsychological tests and the self-reports seem to measure different underlying constructs. The self-reports were most predictive of the presence of an autism spectrum diagnosis.

Maternal parenting stress in families with a child with Angelman syndrome or Prader-Willi syndrome.

BACKGROUND: Parenting stress was investigated in mothers with a child with Angelman syndrome (AS) or Prader-Willi syndrome (PWS), which are genetically related. METHOD: Mothers of 24 children with AS and 23 children with PWS (2-12 years) completed the Nijmegen Parenting Stress Index-Short, Developmental Behaviour Checklist, and Vineland Screener 0-12. RESULTS: Parenting stress was high for 58% of AS and 26% of PWS cases. For both syndromes, no relationship existed with the child's gender, age, or behavioural problems. In PWS there was no effect on level of functioning. Overall, more mothers with a child with AS perceived high parenting stress. When children showed low levels of behavioural problems this difference was contained. However, when children exhibited severe behavioural problems, parenting stress was the same for both syndromes. CONCLUSION: In AS professional family support is essential, since parenting is stressful for many mothers. In PWS, this is especially the case when behavioural problems are present.

Autism spectrum disorders in gender dysphoric children and adolescents.

Only case reports have described the co-occurrence of gender identity disorder (GID) and autism spectrum disorders (ASD). This study examined this co-occurrence using a systematic approach. Children and adolescents (115 boys and 89 girls, mean age 10.8, SD = 3.58) referred to a gender identity clinic received a standardized assessment during which a GID diagnosis was made and ASD suspected cases were identified. The Dutch version of the Diagnostic Interview for Social and Communication Disorders (10th rev., DISCO-10) was administered to ascertain ASD classifications. The incidence of ASD in this sample of children and adolescents was 7.8% (n = 16). Clinicians should be aware of co-occurring ASD and GID and the challenges it generates in clinical management.

Theory of mind in adults with HFA and Asperger syndrome.

Theory of mind was assessed in 32 adults with HFA, 29 adults with Asperger syndrome and 32 neurotypical adults. The HFA and Asperger syndrome groups were impaired in performance of the Strange stories test and the Faux-pas test and reported more theory of mind problems than the neurotypical adults. The three groups did not differ in performance of the Eyes test. Furthermore, correlations between the Eyes test and the three other theory of mind tests were low or absent. Therefore one can question the ability of the Eyes test to measure theory of mind. Of all theory of mind tests used, the self-report questionnaire had the largest discriminating power in differentiating the two disorder groups from the neurotypical group.

Autistic disorder symptoms in Rett syndrome.

According to the major classification systems it is not possible to diagnose a comorbid autistic disorder in persons with Rett syndrome. However, this is a controversial issue, and given the level of functioning of persons with Rett syndrome, the autistic disorder is expected to be present in a comparable proportion as in people with the same level of functioning. To investigate, parents of 52 females with classical and atypical Rett syndrome (2.4-49.3 years) completed the Developmental Behavior Checklist (DBC), the Diagnostic Interview for Social and Communication Disorders (DISCO) and the Dutch Vineland Screener 0-6 (VS 0-6). All participants had a severe to profound intellectual disability (ID) according to the VS 0-6. Behavior indicated an autistic disorder in 42 (DBC) to 58 percent (DISCO) of the Rett cases. Autistic behavior had decreased in 19 percent such that they no longer met the criteria for autistic disorder. Some participants were suspected of having a comorbid autistic disorder, though not more often than can be expected at their level of functioning. Clinicians should be aware of the possibility of a comorbid autistic disorder as much as they should be in other people with this level of functioning.

Parenting Stress in CHARGE Syndrome and the Relationship with Child Characteristics.

This study investigates the parental perception of stress related to the upbringing of children with CHARGE syndrome and its association with behavioral and physical child characteristics. Parents of 22 children completed the Nijmegen Parenting Stress Index-Short, Developmental Behavior Checklist, and Dutch Vineland Screener 0-12 and reported their child's problems with hearing, vision and ability to speak. Parenting stress was high in 59% of the subjects. Behavioral problems on the depression, autism, self-absorbed and disruptive behavior scales correlated positively with parenting stress. A non-significant trend was found, namely higher stress among the parents of non-speaking children. No associations were found with other child characteristics, i.e. level of adaptive functioning and intellectual disability, auditory and visual problems, deafblindness, gender, and age. Raising a child with CHARGE syndrome is stressful; professional support is therefore essential for this population. More research into other possible influencing characteristics is needed to improve family-oriented interventions. Since CHARGE is a rare syndrome, closer international collaboration is needed, not only to expand the group of study subjects to increase statistical power, but also to harmonize research designs and measurement methods to improve the validity, the reliability, and the generalization of the findings.

Vineland Screener 0-12 years research version (NL). Constructing a screening instrument to assess adaptive behaviour.

In Western countries the need to assess the adaptive behaviour of a wide range of individuals within the framework of research and policy-making has increased in recent years. To meet this need a screener version of the Vineland Adaptive Behaviour Scales (VABS) was developed in The Netherlands. This screener is a questionnaire to be filled out by primary care-givers. Using a limited number of items the instrument covers the four domains of adaptive behaviour portrayed in the original Expanded Version of the VABS. In this article the psychometric characteristics of this screener are determined in a non-clinical population of children from 0 to 12 years using a sample of 984 children. Available data support the reliability and validity of the screener. Internal consistency of the domains and test-retest reliability are high: 0.90 or more. High intra-class correlations between scores of mothers and fathers show that inter-rater agreement is also satisfactory. Furthermore the domain scores contribute evenly to the composite score. The associations with chronological age/calendar age are strong. Correlations range between 0.80 and 0.95, implying that an increase in age linearly is related to an increase in adaptive behaviour. Newly born children obtain virtually no scores, and increase of scores levels off at different ages near the end of the intended age range. The results indicate that the screener is a promising research instrument to assess the adaptive behaviour of children by means of a short questionnaire filled out by their primary care-givers.

Social and emotional detachment: a cross-cultural comparison of the non-disruptive behavioural psychopathic traits in children.

BACKGROUND: Questions about the international reliability and validity of aspects of psychopathy have been raised for adults, but hardly considered when applying the constructs to children. AIMS/OBJECTIVES: Our aim was to compare the psychometrics of a new instrument to measure psychopathic traits in children between two countries - the Netherlands and Greece. We also tested the hypothesis that, in both countries, both narcissistic-egocentric and callous-unemotional dimensions would be related to observed behavioural disorders. METHODS: The Social and Emotional Detachment Questionnaire was used to assess narcissistic-egocentric and callous-unemotional dimensions of personality in representative national and community samples of 4-12-year-old children in the Netherlands and Greece, respectively. Parents filled in the questionnaires anonymously and also provided ratings of conduct disorders. RESULTS: A two-dimensional construct of the psychopathic syndrome depicting, respectively, narcissistic and unemotional traits was reliable and valid in both countries, although there was considerable correlation between these two dimensions, which we designated 'social detachment' and 'emotional detachment', respectively. In both countries, the composite of social and emotional detachment was associated with aggressive and antisocial conduct disorders. CONCLUSIONS/IMPLICATIONS: The reliability, validity and predictive value of this questionnaire must be tested further, for example, through multiple informants and longitudinally, but our findings that the tool performs robustly in two very different European countries is encouraging in terms of its potential value as a clinical screening tool and a tool for furthering the understanding of serious behavioural disorders in children.

Patterns of intellectual, adaptive and behavioral functioning in individuals with mild mental retardation.

Many researchers have studied the population of individuals with mild mental retardation (MIMR) as if it is a clear entity. Few researchers have investigated potential subtypes within the MIMR population. The purpose of the present study was to investigate which subtypes can be identified on the basis of intellectual, adaptive and behavioral functioning. Seventy-three individuals with MIMR were assessed on measures of intellectual, adaptive and behavioral functioning. An agglomerative hierarchical cluster-analytic technique was used to define potential subgroups with characteristic behavioral patterns. Four subtypes were identified. The behavioral patterns are described and implications for assessment are discussed.