Adult siblings of individuals with Down syndrome versus with autism: findings from a large-scale US survey

Background As adults with Down syndrome live increasingly longer lives, their adult siblings will most likely assume caregiving responsibilities. Yet little is known about either the sibling relationship or the general functioning of these adult siblings. Using a national, web‐based survey, this study compared adult siblings of individuals with Down syndrome to siblings of individuals with autism in terms of a potential ‘Down syndrome advantage’ and changes across age of the brother/sister with disabilities. Methods Two groups were examined, siblings of persons with Down syndrome (n = 284) and with autism (n = 176). The Adult Sibling Questionnaire measured the number and length of contacts between siblings and their brothers/sisters with disabilities; the warmth, closeness and positiveness of the sibling relationship; and the sibling's overall levels of perceived health, depression and rewards of being a sibling. Results Compared with siblings of brothers/sisters with autism, siblings of brothers/sisters with Down syndrome showed closer, warmer sibling relationships, along with slightly better health, lower levels of depressive symptoms and more contacts. Across age groups of the brother/sister with disabilities, both groups showed lessened contacts, with less close sibling relationships occurring when brothers/sisters with disabilities were aged 30–44 years and 45 years and older (in Down syndrome) and 45 years and older (in autism). Within both groups, closer sibling relationships were associated with more frequent and lengthy contacts, brothers/sisters with disabilities who were better at maintaining friendships and had lower levels of behavioural/emotional problems, and siblings who felt themselves more rewarded by being a sibling to a brother/sister with disabilities. Conclusions In line with earlier work on families of children with disabilities, this study shows an advantage for siblings of adults with Down syndrome, in terms of both sibling relationships and of slightly better health and lessened depressive symptoms. Both joint contacts and close sibling relationships do, however, differ when the brother/sister with disabilities is older. As the first generation of probable caregivers, siblings of persons with Down syndrome who are in their forties, fifties and sixties require increased research attention.     

Teaching students with autism to tie a shoelace knot using video prompting and backward chaining

Purpose: To evaluate the effects of video prompting and backward chaining for teaching students with autism to tie a shoelace knot.

Method: Videos featuring an adult and a peer or sibling model were used as part of the video prompting procedures to teach three boys with autism to tie a shoelace knot. A backward chaining procedure involving live modelling and verbal instruction was introduced following the video prompting phases.

Results: Although the video prompting interventions increased the number of steps in the shoelace tying task completed by each of the participants, the backward chaining procedure was more effective, enabling one participant to reach mastery and a second participant to approach mastery.

Conclusion: Practitioners should consider the pre-requisite skills of the participants and the nature of the target behaviour when selecting an intervention to teach daily living skills to individuals with autism.     

Brief report: Behavioral adjustment of siblings of children with autism

Existing research studies have shown mixed results relating to the impact upon children of having a sibling with a disability. However, siblings of children with autism may be more at risk than siblings of children with other disabilities. In the present study, data were gathered on 22 siblings of children with autism. These children were rated by their mothers as having more behavior problems and fewer prosocial behaviors than a normative sample. Analysis of variables predicting sibling behavioral adjustment revealed that boys with siblings who have autism, and also those younger than their sibling with autism, engaged in fewer prosocial behaviors. Psychological adjustment of mothers (stress) and the child with autism (behavior problems) were not predictive of sibling behavioral adjustment.     

Teaching play skills to young children with autism

Abstract

Background Play is critical for the development of young children and is an important part of their daily routine. However, children with autism often exhibit deficits in play skills and engage in stereotypic behaviour. We reviewed studies to identify effective instructional strategies for teaching play skills to young children with autism.

Method Empirical studies on teaching play skills to young children with autism published from 1990 to 2011 were located. These studies included single subject and group designs.

Results Twenty-six studies were reviewed. The majority of studies on teaching play skills used combined interventions. Children with autism improved their play skills, with direct intervention embedding their interests during play. Improvements in play skills increased positive social interactions and decreased inappropriate behaviour as collateral effects.

Conclusions Further research is needed to develop more effective play skill interventions that assess the functional use of play and are implemented in the natural environment.     

Participation in extracurricular activities for children with and without siblings with autism spectrum disorder

Objective: To compare the number, frequency, enjoyment and performance in extracurricular activities of siblings of children with autism spectrum disorders (ASD) to their typically developing (TD) peers, and to identify differences between actual and desired participation. Methods: A case-control study with 30 siblings of children with ASD and 30 siblings of TD children was conducted using the Paediatric Interest Profiles and a questionnaire. Results: Siblings of children with ASD participated in fewer extracurricular activities than those with TD siblings. ASD symptoms were significantly associated with the sibling participating in fewer extracurricular activities. Children with TD siblings had higher enjoyment scores in relaxation activities than children with siblings with ASD. Conclusion: While results were mainly positive, some differences indicated that having a sibling with ASD may impact participation in extracurricular activities. Assessments of participation barriers, as well as support to minimise participation restrictions among siblings of children with ASD are required.     

Sibling and adult video modelling to teach a student with autism: Imitation skills and intervention suitability

Purpose: To investigate the effectiveness of adult-as-model and sibling-as-model video modelling procedures for an individual with autism who demonstrated limited imitation skills.

Methods: This study assessed the imitation ability of Matthew, a 15 year-old boy with autism, and then used video modelling, with his sibling and an adult as models, in order to teach him to match coins, respond to questions in a group discussion time and prepare a snack of noodles.

Results: Matthew seldom responded to imitative opportunities in the assessment. Also, minimal changes in his ability to perform the target behaviours resulted from either of the video modelling conditions.

Conclusion: An individual's imitation skills are an important pre-requisite for successful video modelling intervention.     

Applied Behavior Analysis Programs for Autism: Sibling Psychosocial Adjustment During and Following Intervention Use

Psychosocial adjustment in siblings of children with autism whose families were using a home-based, applied behavior analysis (ABA) program was compared to that of siblings in families who were not using any intensive autism intervention. Data gathered from parents, siblings and teachers indicated that siblings in ABA families experienced neither significant drawbacks nor benefits in terms of their behavioral adjustment, sibling relationship quality and self-concept compared to control group siblings, either during or following intervention use. Parents and siblings perceived improvements in sibling interaction since the outset of ABA, with parents somewhat more positive in their views than were siblings. Social support was associated with better sibling outcomes in all groups. Implications for supporting families using ABA are considered.     

What symptoms predict the diagnosis of autism or PDD-NOS in infants and toddlers with developmental delays using the Baby and Infant Screen for aUtIsm Traits

Purpose: Autism Spectrum Disorders (ASD) are characterized by life-long and severe symptoms such as stereotypies, social skills deficits and language delays. Previous research has demonstrated that children who receive early intensive behavioural intervention have a better prognosis than those who do not receive services. It is for this reason that assessments designed specifically for early identification of ASD are of paramount important.

Method: In Study 1, 957 infants with autism, PDD-NOS and atypical development were evaluated using an assessment screener for ASD traits, the Baby and Infant Screen for aUtIsm Traits (BISCUIT). In Study 2, only those with an autism or PDD-NOS diagnosis were evaluated.

Results: The BISCUIT was found to have an excellent overall classification rate for children in the target population. A sub-set of BISCUIT items was found that distinguished children with ASD from atypically developing children. Items were also found which could accurately predict autism vs PDD-NOS diagnosis.

Conclusions: These data suggest that the core features of ASD are distinct and can be identified early in life. Furthermore, the presence of specific core behaviours can allow for a more accurate clinical and diagnostic picture for young children with autism or PDD-NOS vs general developmental delays.     

The experience of siblings of individuals with CHARGE syndrome

Background We investigated the experience of siblings of children with CHARGE syndrome (n?=?29). Siblings of children with a disability are an understudied population, and, to our knowledge, this is the first investigation of the sibling relationship in CHARGE.

Method Participants were asked to complete 5 measures: (a) Sibling Evaluation Questionnaire, (b) UCLA Loneliness Scale, (c) Network Orientation Scale, (d) Family Hardiness Index, and (e) Family Member Well-Being Index.

Results Participants accepted their sibling with CHARGE, with the relationship being neither highly negative nor positive. Although siblings reported to be somewhat less lonely, they were no less likely to access social support than college-aged peers. Participants did not indicate adjustment issues; however, more than half of the siblings reported avoiding adding to their parents’ stress. Further, they rated their own personal wellbeing very positively.

Conclusion In spite of acknowledging stress within the family, these siblings represent themselves as well adjusted with a somewhat typical sibling relationship.     

Moderating Effects of Parental Characteristics on the Effectiveness of a Theory of Mind Training for Children with Autism: A Randomized Controlled Trial

This RCT investigated whether the effect of a Theory of Mind (ToM) intervention for children with ASD was moderated by parental education level and employment, family structure, and parental ASD. Children with autism aged 8–13 years (n?=?136) were randomized over a waitlist control or treatment condition. At posttest, children in the treatment condition had more ToM knowledge, showed fewer autistic features, and more ToM-related behavior than children in the control condition. Children who had one or two parents with at least a college degree, and children with parents not diagnosed with/suspected of having ASD themselves benefitted from the training. These findings provide valuable information about family variables that need to be taken into account in treatment design and implementation.     

Parentification of adult siblings of individuals with autism spectrum disorder: Distress,sibling relationship attitudes,and the role of social support

Background Typically developing (TD) siblings of individuals with autism spectrum disorder (ASD) often fulfil caregiving roles as children or adults (i.e., parentification, which can be either parent-focused or sibling-focused).

Method This study examines how parentification interacts with social support when predicting distress and sibling relationship attitudes in 60 TD adult siblings of individuals with ASD.

Results Perceived social support served as a moderator. Specifically, TD adult siblings who experienced high parent-focused parentification during childhood and low current social support were most likely to report high distress. TD siblings who reported low sibling-focused parentification during childhood and low current social support were most likely to report less positive attitudes about their relationships with their siblings with ASD.

Conclusions Current findings suggest that perceived social support may serve as a potential point of intervention for reducing distress and improving sibling relationship attitudes among adult TD siblings of those with ASD.     

The Prevalence and Psychopathological Correlates of Sibling Bullying in Children with and without Autism Spectrum Disorder

Using data from a prospective population based study, the prevalence and psychopathological correlates of sibling bullying in children with and without autism spectrum disorder (ASD) were estimated. There were 475 children with ASD and 13,702 children without ASD aged 11 years. Children with ASD were more likely to be bullied by their siblings compared to those without ASD. They were also more likely than those without ASD to both bully and be bullied by their siblings, which was associated with lower prosocial skills as well as more internalizing and externalizing problems compared to those not involved in any sibling bullying. Interventions to improve social and emotional outcomes in children with ASD should focus on both the affected and the unaffected sibling.     

Sibling relationships in individuals with Angelman syndrome: A comparative study

Objective: Investigating the impact of Angelman syndrome on the sibling relationship.

Methods: This study explored differences in sibling relationships between children with a typically-developing sibling (n?=?55) and children with a sibling with Angelman syndrome (n?=?44). Sibling relationships were compared on four factors and 16 sub-scales of the Sibling Relationship Questionnaire-Revised.

Results: Results showed significant differences in mean scores on each of the four factors (i.e. Warmth/Closeness, Conflict, Rivalry and Dominance/Nurturance) and most of the sub-scales. ANCOVAs showed that demographic variables (number of siblings, living in a two-parent vs single parent household, gender, participant's age, place of residence) did not influence significant differences in sibling relationships between the two groups.

Conclusion: Having a brother or sister with Angelman syndrome may influence the way in which the sibling perceives the sibling relationship. This may have important implications for family-centred intervention for this population.     

Psychosocial effects on siblings of children with autism and mental retardation: a population-based study

The probands of this study were 60 children and young adults between 5 and 20 years of age, 20 of whom had siblings with autism, 20 of whom had siblings with mental retardation, and 20 of whom had siblings who were free of handicap. The three proband groups were matched for gender, birth order and socioeconomic status. The children were questioned about their sibling relationships and about particular problems they faced concerning their handicapped brothers or sisters and about problems concerning themselves. Parents were interviewed about the healthy child's behaviour and social adjustment. Mothers completed the Eysenck Personality Inventory concerning themselves. Siblings of handicapped children and especially siblings of children with autism were more concerned about the future. They also felt lonely more often and many of them had peer problems. They often regarded their handicapped siblings as a burden. They tended to have only one sibling. Siblings often did not know why their handicapped brother or sister was different from other children. There were more behaviour disturbances in the siblings of handicapped children and mothers with a child with autism reported more ‘stressful events’. There were no differences as regards the personality of the mothers and the self-concept of the children between the three groups.     

Variability in adaptive behaviour in young children with autism spectrum disorder

ABSTRACT

Background Understanding adaptive behaviour variability in children with autism spectrum disorder (ASD) may have important implications for early intervention. The purpose of this study was to explore whether autism symptom severity and caregiver depression affected adaptive behaviour in young children with ASD.

Method Data were collected from 60 primary caregivers of children aged 2–6 years with ASD. A factorial multivariate analysis of covariance was conducted to investigate if different levels of autism symptom severity and caregiver depression affected communication, socialisation, and daily living skills, after controlling for child age.

Results Findings suggest that only autism symptom severity accounted for significant variance in adaptive behaviour, with socialisation being most impacted. Although more than half of the caregivers reported heightened depressive symptoms, caregiver depression was not related to adaptive behaviour.

Conclusions Findings highlight the level of functional impairment that young children with ASD experience in relation to autism symptom severity.     

A controlled trial of the SibworkS group program for siblings of children with special needs

Siblings of children with a disability are an at risk group for emotional and behavioral problems. This study evaluated an intervention to promote the emotional and behavioral functioning of siblings of children with disabilities and chronic health conditions. SibworkS is a six-week manual-based, cognitive–behavioral group support program focussed on strengthening siblings’ perceived social support, self-esteem, problem-solving skills, adaptive coping behaviors and positive sibling relationships. Fifty-six children aged 7–12 were allocated to either the SibworkS program (n = 30) or waitlist control (n = 26) in alternating sequence. The primary outcome was siblings’ emotional and behavioral functioning. Additional outcomes were self-esteem, perceived social support, the sibling relationship and coping behaviors. Siblings were followed-up immediately after the intervention and at 3-months. Siblings participating in the SibworkS intervention were reported to have fewer emotional and behavioral difficulties than siblings in the control group immediately following the intervention and at the 3-month follow-up. Participation in SibworkS was associated with fewer emotional and behavioral difficulties for siblings. Implications for practice and future research include recommendations for improving program participation.     

Longitudinal Relationships Between Sibling Behavioral Adjustment and Behavior Problems of Children with Developmental Disabilities

Siblings of children with developmental disabilities were assessed twice, 2 years apart (N = 75 at Time 1, N = 56 at Time 2). Behavioral adjustment of the siblings and their brother or sister with developmental disability was assessed. Comparisons of adjustment for siblings of children with autism, Down syndrome, and mixed etiology mental retardation failed to identify group differences. Regression analysis showed that the behavior problems of the child with developmental disability at Time 1, but not the change in their behavior over time, predicted sibling adjustment over 2 years. There was no evidence that this putative temporal relationship operated bidirectionally: sibling adjustment did not appear to be related to the behavior problems of the children with developmental disabilities over time.     

Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: the moderating role of social support

There have been few studies of the impact of intensive home-based early applied behavior analysis (ABA) intervention for children with autism on family functioning. In the present study, behavioral adjustment was explored in 78 siblings of children with autism on ABA programs. First, mothers' ratings of sibling adjustment were compared to a normative sample. There were no reported increases in behavioral adjustment problems in the present sample. Second, regression analyses revealed that social support functioned as a moderator of the impact of autism severity on sibling adjustment rather than a mediator or compensatory variable. In particular, siblings in families with a less severely autistic child had fewer adjustment problems when more formal social support was also available to the family. The implications of these data for future research and for practice are discussed.     

Feeding and Eating Behaviors in Children with Autism and Typically Developing Children

Mothers of children aged 2–12 years completed an exhaustive questionnaire assessing feeding and eating behaviors for both themselves and their children with autism, and typically developing siblings of children with Autism Spectrum Disorder (where available), or typically developing children with no sibling with a disability. Results indicate that children with autism were only marginally more likely to exhibit picky eating behavior (overall style) than their siblings or matched typically developing children. Rates of ritualistic feeding behaviors were equivalent in all groups of children although children with autism were more likely to be currently exhibiting problematic eating and feeding behaviors. The implications of these results for the treatment of feeding difficulties exhibited by children with autism will be discussed.

Sibling self-management: Programming for generalization to improve interactions between typically developing siblings and children with autism spectrum disorders

The present study taught typically developing (TD) siblings of children with autism spectrum disorders (ASD) social-communicative and self-management skills. The authors’ hypothesized that the acquisition of self-management skills would support generalization of targeted social-communicative responses. A multiple baseline probe design across sibling dyads was used to decrease exposure to unnecessary sessions in the absence of intervention. Four TD siblings were taught self-management of a social skills curriculum using behavioral skills training, which consisted of instructions, modeling, practice, and subsequent feedback. Results indicated that TD siblings learned to self-manage the social skills curriculum with some generalization across novel settings and over time. Comparisons of social-communicative responses to their typical peers provided some support for the social validity of the intervention outcomes. These results support the use of self-management, when explicitly programming for generalization, which continues to be a key consideration when including TD siblings in interventions with their siblings with ASD.