Title: Family wellbeing of individuals with autism spectrum disorder: A scoping review
Authors: Tint and Weiss
DOI: 10.1177/1362361315580442
Lay abstract: In 2012, the United Nations formally acknowledged the important role of families within society and called for the development of policies to promote family wellbeing. Families play an important role in supporting individuals with autism spectrum disorder (ASD) across the lifespan. However, clinicians and policy makers rarely focus on the wellbeing of families of individuals with ASD. We reviewed the existing literature and found 86 studies that examined this topic. Many studies employed overly broad definitions of family wellbeing and used several different techniques to measure wellbeing. We offer a number of suggestions for future research on the topic with an eye towards policy relevance. Specifically, future research would benefit from a focus on families’ interdependent relationships (i.e. how much different individuals rely on each other) within different contexts (e.g. within different social or cultural contexts). ASD family wellbeing research also stands to benefit from greater attention paid to families’ strengths.
Title: How well are children with autism spectrum disorder doing academically at school? An overview of the literature
Authors: Keen, Webster and Ridley
DOI: 10.1177/1362361315580962
Lay abstract: How well individuals with autism spectrum disorder (ASD) do at school is important to teachers, families and students with ASD but hasn’t really been given a lot of attention by researchers. Finding out what factors can help these students do better at school is really important because research has shown that they don’t do as well as their peers who are similar to them in most other ways. We undertook a review of the research to identify factors that help children and adolescents with ASD do well at school. Nineteen studies were found that met the inclusion criteria for the review. Results indicated that many individuals with ASD have specific areas of strength and weakness although this varies a lot across the autism spectrum. There was little research on adolescents and individuals with lower intelligence scores. Studies tended to focus on child characteristics rather than on factors in the environment that might influence how well children do at school. Profiling individual strengths and weaknesses of children and adolescents with ASD will help educational programming. Further research on child-related and environmental factors that predict success at school is needed.
Title: Can findings from randomized controlled trials of social skills training in autism spectrum disorder be generalized? The neglected dimension of external validity
Authors: Jonsson, Choque Olsson and Bölte
DOI: 10.1177/1362361315583817
Lay abstract: When treatment effects are evaluated in systematic literature reviews, the study design and conduct is usually assessed carefully to determine if the results can be trusted. However, in order to be useful the results must also be generalizable to the real-world context for which the treatment is ultimately intended. The generalizability of study results can for instance depend on the characteristics of the study participants, the setting and the staff, how the treatment is designed and delivered, and how the results are measured. In this study we reviewed information about such aspects in randomized trials of social skills group interventions for children and adolescents with autism spectrum disorder (ASD). We found 15 studies in which participants were randomized to either social skills group intervention or a ‘control group’ (who did not receive the intervention). The study participants were mainly high-functioning school-aged boys with ASD. Most trials did not take into account other mental health conditions that many persons with ASD have. While most trials used treatment manuals, information about the care providers and settings was sparse. It was not evident to what extent social skills learned in the group training were enacted in everyday life and maintained over time. We conclude that the generalizability of the results is unclear and that information needed for assessment of generalizability is often missing. At this point, more research on how social skills group interventions perform in real-world settings is needed. When new trials are planned and reported, more attention should be given to generalizability.
Title: Anxiety symptoms in young people with autism spectrum disorder attending special schools: Associations with gender, adaptive functioning and autism symptomatology
Authors: Magiati, Ong, Lim, Tan, Ong, Patrycia, Fung, Sung, Poon and Howlin
DOI: 10.1177/1362361315577519
Lay abstract: Anxiety problems are among the most frequently reported difficulties in children and young people with an autism spectrum disorder (ASD). Clinicians and researchers have been trying to better understand how anxiety presents in individuals with ASD. They have also been trying to work out what factors could explain why anxiety rates are so high for many individuals with ASD, so that clinicians will know more about which factors they can target in intervention.
This study looked at whether children’s gender (being male or female), age (being younger or older), independence skills (i.e. daily living, communication and social skills) and autism-related symptoms and problems (such as social and communication difficulties or restricted behaviors/ interests) explain rates and types of anxiety in young people with ASD. Participants were caregivers of 241 6–18 year old children with ASD attending special schools in Singapore. They completed questionnaires about their child’s anxiety, other emotional or behavioral problems and a measure of their level of independence skills.
We found that there was no difference in anxiety symptoms if the children were boys or girls. Being older seemed to be associated with having more social worries only, but not with other anxiety problems. Children’s repetitive speech and behavioral symptoms best explained anxiety in this study, with the exception of social worries or fears about physical injury. Children who were higher functioning in terms of their independence skills also had somewhat more anxiety symptoms.
We discuss the study’s results in relation to existing literature and explain its limitations. We then discuss ways in which our findings could be used by clinicians to reduce anxiety, and to assess and support anxious children with ASD.
Title: Child characteristics associated with outcome for children with autism in a school-based behavioral intervention
Authors: Pellecchia, Connell, Kerns, Xie, Marcus and Mandell
DOI: 10.1177/1362361315577518
Lay abstract: Studies of behavioral interventions for children with autism spectrum disorders (ASD) show that some children make significant progress, but others make little to no progress. The reasons for these differences remain unclear, although some researchers think it may be related to the children’s cognitive level, language and social skills when they start the intervention. Our study examined whether age, language ability, autism severity, social skills, adaptive behavior (life skills such as feeding and bathing), co-occurring psychological symptoms (e.g. anxiety), and restrictive and repetitive behavior were associated with outcome (i.e. how well the children were doing) following one year of a behavioral intervention for children with ASD. Our study differed from previous studies in that we examined school-age children and our participants were drawn from (and studied in) public schools. We found that the child’s age and the presence of symptoms of social anxiety (such as social avoidance and social fearfulness) were associated with differences in outcome: children who were younger or had fewer symptoms of social anxiety at the start of the academic year made greater gains in cognitive ability at the end of the academic year than older children and children with more social anxiety symptoms. The findings regarding the role of social anxiety are new and have important implications for treatment. It is difficult to measure and interpret symptoms of social anxiety in children with autism, because it could represent lack of social motivation or it could represent increased levels of social fearfulness. We need to study these symptoms more in individuals with autism, and determine whether addressing them before or during behavioral intervention will improve treatment response.
Title: Characterizing caregiver responses to restricted and repetitive behaviors in toddlers with autism spectrum disorder
Authors: Harrop, Gulsrud, Shih, Hovsepyan and Kasari
DOI: 10.1177/1362361315580443
Lay abstract: Restricted and repetitive behaviors (RRBs) are a core feature of autism spectrum disorder (ASD). In this study, we measured the presence of RRBs (motor, visual, object and verbal) in 85 toddlers with ASD as they played with their caregiver. For each child RRB, we coded whether their caregiver responded to the behavior (physical, verbal or redirection) and whether this response was successful in immediately reducing the child RRB or increasing social engagement with their child.
A total of 83 out of 85 toddlers demonstrated at least one RRB while playing with their caregiver for ten minutes. The average number of RRBs per minute was just under 2. The most common child behavior was repetitive object use with 72 toddlers displaying at least one instance within the play interaction.
Caregivers responded to 47% of their child’s RRBs. Percentage of caregiver response varied by child RRB type, with more responses to visual and object RRBs. The most common caregiver response was redirection. In general caregivers were more likely to redirect visual and object behaviors and not respond to motor and verbal ones.
This study represents the first attempt to characterize how caregivers respond to RBBs while playing with their child. Toddlers with ASD are already demonstrating a variety of RRBs within the context of a free play sessions and caregivers differentially and naturally respond to them.
Title: How are they doing? Listening as fathers of children with autism spectrum disorder compare themselves to fathers of children who are typically developing
Authors: Cheuk and Lashewicz
DOI: 10.1177/1362361315584464
Lay abstract: Although fathers are increasingly hands-on in raising children, research about parenting children with autism spectrum disorder (ASD) continues to be skewed towards experiences of mothers. Our purpose in this paper is to examine how fathers of children with ASD perceive themselves to be managing. Twenty-eight fathers of children (aged 2–13) with ASD in Western Canada took part in detailed interviews about their parenting successes and challenges. We found fathers of children with ASD speak of what they have in common with all fathers. Yet they describe their own sense of loss and their efforts to come to terms with the unanticipated demands of ASD by “building new dreams”. Our group of fathers felt “pangs of jealousy” towards fathers of typically developing children, especially when they perceived fathers of typically developing children to be “taking their children for granted”. At the same time, the fathers of children with ASD were keenly attentive to their own child’s development and expressed gratitude for their child’s capabilities and personality. This is amidst an appreciation for the trials and triumphs of fathering in general and fathering a child with ASD in particular.
Title: Is there concordance in attitudes and beliefs between parents and scientists about autism spectrum disorder?
Authors: Fischbach, Harris, Ballan, Fischbach and Link
DOI: 10.1177/1362361315585310
Lay abstract: There is no reported research study comparing concordance (agreement) in attitudes and beliefs about autism spectrum disorder (ASD) between parents of children with ASD and scientists who research ASD. Telephone interviews were conducted o investigate levels of agreement between these groups on causes of autism, priorities of research, perceived stigma of individuals with ASD (i.e. whether they are “made to feel inferior, shamed, isolated, or their self-image is damaged”), and disclosure of genetic test results. A total of 502 parents (who were participants in the Simons Simplex Collection – http://sfari.org/resources/autism-cohorts/simons-simplex-collection), and 60 research scientists (who were investigators funded by a US organization, the Simons Foundation – www.simonsfoundation.org) took part. Parents and scientists differed significantly regarding their beliefs of the likely major cause of autism and priorities for further research. Scientists believed in genetic causes while many parents believed in vaccines as the cause of autism. Parents (37%) were more likely to hesitate vaccinating their child. In contrast, there was strong agreement regarding the belief that individuals with ASD are stigmatized (95% vs. 92%) and preferences for disclosure of genetic test results, including unexpected findings. While scientists believed communication to be important, fewer than half reported it important to communicate directly with parents. Better communication between parents and scientists should improve mutual understanding and ultimately, the health and wellbeing of children with ASD and their families.
Title: Screening for autism spectrum disorder in underserved communities: Early childcare providers as reporters
Authors: Janvier, Harris, Coffield, Louis, Xie, Cidav and Mandell
DOI: 10.1177/1362361315585055
Lay abstract: Early diagnosis of autism is associated with earlier access to intervention and improved outcomes. In the United States, children from minority backgrounds are typically diagnosed with autism later than white children, limiting their access to early, specialized interventions and possibly resulting in poorer outcomes. Daycares and preschools may be important venues for early identification, especially for minority children. In this study, early childcare providers within underserved communities completed questionnaires used to check for the early signs of autism (known as ‘screening tools’) for 967 low-risk young children in their programs. Early childcare providers returned screening tools for 90% of the children for whom parental consent had been received. A total of 14% of children screened positive for autism spectrum disorder (ASD) and 3% of the sample met criteria for ASD. Findings suggest that early childcare providers can screen young children for ASD in preschools and/or daycares, thus improving access to early diagnosis and reducing potential healthcare disparities among underserved groups.
Title: The utility of Thin Slice ratings for predicting language growth in children with autism spectrum disorder
Authors: Walton and Ingersoll
DOI: 10.1177/1362361315584465
Lay abstract: There is a lot of variability in language and communication outcomes for individuals with autism spectrum disorder (ASD) – some individuals with ASD go on to develop very good language and communication skills, whereas others show profound difficulties throughout their lives. Finding better ways to predict language outcomes would be useful for both clinicians and families. Most research that has tried to predict language outcomes for children with ASD has used established tests of a variety of different early skills. In clinical settings, clinicians use many of these tests; however, they also incorporate their overall impressions of a child (“clinical judgment”) into their decision-making process. It is unclear how accurate these clinical judgments are for predicting current or future developmental outcomes (e.g. language or communication skills). To begin to explore this question, we examined how brief impression ratings of very short segments of behavior (“Thin Slice” ratings) related to developmental skills in young children with ASD. A total of 22 preschoolers with ASD participated in several assessments of their developmental skills, as well as a brief videotaped interaction with a therapist. Each child was assessed twice, 6 months apart. Then, groups of approximately 25 untrained, undergraduate students watched two-minute video clips of the therapist-child interactions and provided impression ratings (“Thin Slice” ratings) about each child’s developmental skills. These Thin Slice ratings were highly related to the results of established measures of the children’s developmental skills (e.g. language, imitation, developmental level). This suggests that the Thin Slice ratings provided by untrained observers detected true variability in developmental skills for this group of children. In addition, Thin Slice ratings from Time 1 also predicted children’s vocabulary growth over the next 6 months. Children with higher Time 1 Thin Slice ratings gained more words of expressive vocabulary over time. These results are preliminary. However, they indicate that brief impressions of behavior may have value for predicting children’s current and future developmental skills.
