Awareness and knowledge of autism and autism interventions: A general population survey

Recent figures show that autism spectrum disorder (ASD) affects at least 1 in 88 of the population, yet for years, international public awareness of ASD was limited. Over the past 5–10 years intense efforts have been made to raise autism awareness in the general population in countries such as UK and US. In this paper we report data from a large-scale general population survey (N = 1204) in which we assessed autism awareness, knowledge about autism, and perceptions about autism interventions in Northern Ireland. We found high levels of autism awareness, in fact over 80% of the sample were aware of ASD and over 60% of these respondents knew someone with ASD in their own family, circle of friends or work colleagues. Generally, knowledge of strengths and challenges faced by individuals with ASD was relatively accurate. However, perceptions of interventions and service provider responsibilities were vague and uncertain. Results show that local and international autism awareness campaigns have largely been successful and that the focus should shift towards disseminating accurate information regarding intervention and service provider responsibilities.     

Early intensive behavioral intervention for children with autism: parental therapeutic self-efficacy

Several authors have suggested that the quality of therapist performance accounts for some of the variability in outcomes observed in early intensive behavioral intervention for children with autism. However, there is a distinct lack of theoretical and empirical work addressing therapist performance in this context. In the present study, we explored predictors of one variable, beliefs about one's efficacy in the therapeutic role, that may be related to therapist performance. Eighty-five UK mothers who were acting as therapists for their child's program completed a questionnaire survey. Results showed that program variables (e.g., number of hours of therapy each week, time since program started) were unrelated to maternal therapeutic self-efficacy. However, support received from the program, the severity of the child's autism, and maternal stress were significant predictors. Regression analysis also showed that maternal stress mediated the impact of support from the program and autism severity on maternal therapeutic self-efficacy. Limitations of the study, suggestions for future research, and practical implications are briefly discussed. In particular, we advocate a role for supervisors in analyzing and developing interventions for therapist behavior.     

Patterns of intervention utilization among school-aged children on the autism spectrum: Findings from a multi-site research consortium

When designing and interpreting results from clinical trials evaluating treatments for children on the autism spectrum, a complicating factor is that most children receive a range of concurrent treatments. Thus, it is important to better understand the types and hours of interventions that participants typically receive as part of standard of care, as well as to understand the child, family, and geographic factors that are associated with different patterns of service utilization. In this multi-site study, we interviewed 280 caregivers of 6-to-11-year-old school-aged children on the autism spectrum about the types and amounts of interventions their children received in the prior 6 weeks. Reported interventions were coded as “evidence-based practice” or “other interventions,” reflecting the level of empirical support. Results indicated that children received a variety of interventions with varying levels of empirical evidence and a wide range of hours (0–79.3 h/week). Children with higher autism symptom levels, living in particular states, and who identified as non-Hispanic received more evidence-based intervention hours. Higher parental education level related to more hours of other interventions. Children who were younger, had lower cognitive ability, and with higher autism symptom levels received a greater variety of interventions overall. Thus, based on our findings, it would seem prudent when designing clinical trials to take into consideration a variety of factors including autism symptom levels, age, cognitive ability, ethnicity, parent education and geographic location. Future research should continue to investigate the ethnic, racial, and socioeconomic influences on school-aged intervention services.     

Psychological well-being of mothers of youth with fragile X syndrome: syndrome specificity and within-syndrome variability

Background Research on parental well‐being has focused largely on Down syndrome and autism; however, fragile X syndrome is likely to pose different challenges for parents compared with these other diagnostic conditions. Moreover, there is considerable variability among youth with fragile X syndrome; for example, 25% to 33% of affected youth meet criteria for a co‐morbid diagnosis of autism. It is likely that parents of youth with fragile X syndrome will experience different degrees and patterns of stress, depending on whether their offspring do or do not have a co‐morbid diagnosis of autism. In the present study, we compared mothers of three groups of young males on measures of psychological well‐being and stress: those with fragile X syndrome and a co‐morbid diagnosis of autism; those with fragile X syndrome alone; and those with Down syndrome. Method The sample consisted of mothers of adolescent and young adult males with fragile X syndrome and co‐morbid autism (n = 9), fragile X syndrome alone (n = 19), and Down syndrome (n = 19). We screened all youth for autism using the Autism Behavior Checklist, which was completed by mothers, fathers and teachers, and the youth who scored above the suggested cut‐off were evaluated by a licensed psychologist to determine autism status. The three groups of youth did not differ in chronological age (16.4, 15.8 and 16.0 years, respectively) or non‐verbal mental age (3.8, 3.9 and 3.8 years, respectively). Several self‐report measures were completed by mothers. These measures assessed current mental health status (e.g. the Center for Epidemiological Studies Depression Scale), perceptions of their son’s and family’s functioning (e.g. the Positive Affect Index, which measures closeness felt by the mother to her son and also reciprocated closeness felt by the son towards the mother, as perceived by the mother), and approach to coping with their son’s disability [e.g. the Multidimensional Coping Inventory (COPE), which measures emotion‐focused and problem‐solving focused coping]. Results The results suggest that fragile X syndrome creates more challenges to maternal psychological well‐being than Down syndrome, and that the combination of fragile X syndrome and autism can be particularly challenging. Differences among groups, however, were manifested mainly as concerns about the affected son and about relationships within the family rather than as lower levels of mental health. Thus, mothers of sons with fragile X syndrome, regardless of the son’s autism status, reported more pessimism about the son’s future and more conflict within the family than mothers of sons with Down syndrome. Additionally, mothers of sons with fragile X syndrome and co‐morbid autism reported lower levels of reciprocated closeness than the other two groups of mothers. Conclusion We consider possible causes of these maternal differences, the implications for clinical practice, needs for future research, and the importance of understanding child and contextual factors as well as the dynamics leading to these differences.     

The effect of emotional intensity on responses to joint attention in preschoolers with an autism spectrum disorder

BackgroundResponding to joint attention (RJA) is reduced in young children with ASD despite being vital to the early development of social communication. For this reason, RJA is a frequent target in early intervention programs. Clinical guidelines suggest that exaggerating facial expressions or gestural pointing may improve RJA in children with autism by clarifying the meaning of the gaze or gesture. In the current study, we investigate the effect of intensity of emotional expression on RJA in preschoolers with ASD.MethodTwenty-five preschoolers with ASD and 21 typically developing peers were administered a specifically designed eye-tracking task in which an actor directs attention to a moving object by looking at it with an expression that was either neutral, mildly surprised or intensely surprised. In a supplementary condition, gestural pointing was accompanied by a neutral gaze shift.ResultsCommensurate with previous studies, children with ASD oriented less to the face of the actor and were less responsive to RJA when compared to their typically developing peers. However, children with autism differed in their response to RJA according to the different task conditions. They demonstrated more frequent responses to RJA when the actor’s facial expression was either intense or supported by gestural pointing.ConclusionsWe report initial evidence for the importance of clarifying content cues in order to help preschoolers with autism adhere to receptive joint attention (RJA) opportunities. Our findings inform knowledge about early treatment and attention to emotional expressions in autism and improve our understanding of how early interventions may work to increase RJA in young children with ASD.     

Assessing change in early intervention programs for children with autism

Assessing the efficacy of any intervention can be a difficult task. In the case of children with autism who require comprehensive and long-lasting interventions, the task becomes even more difficult. In this paper, intervention studies based on comprehensive interventions for young children with autism are reviewed and examined in reference to elements that are essential to a well-designed treatment study, e.g., randomization/matching procedures, and outcome measures. Given the complexity of these comprehensive intervention programs, and the few data available on interventions with clear empirical validation, a plea is made for studies to consider the active ingredients or component parts of an intervention, e.g., number of hours, type of setting, and teaching approach. Suggestions are further made for improving future studies, including more rigorous designs, and measuring change.     

Psychotherapy of children with pervasive developmental disorders

In recent years, the role of psychotherapy in the treatment of children with pervasive developmental disorders, such as autism and Asperger's Syndrome, has been questioned. Advances in neuropsychiatry, neuropsychology, and genetics, as well as the refinement of behavioral and educational techniques, have relegated discussions about psychotherapy mostly to reviews about the history of treatment for autism. Even when psychotherapeutic work is suggested, it is typically only very structured supportive counseling for older and high functioning children and adolescents that is considered. This paper argues that there is a central role for psychotherapy for children with pervasive developmental disorders, and that psychotherapeutic interventions should begin at a younger, rather than older age.     

精神分裂症患者的心理社会干预

精神分裂症的治疗不仅包括药物治疗,还包括为患者提供支持、有效的信息、心理社会干预以及康复治疗。中国的研究者在精神分裂症患者非药物治疗领域进行着各项研究,而国外研究数据一致显示心理社会干预可以降低复发率和再住院率。尽管缓解症状仍然是精神分裂症治疗的一个重要目标,但工作、学习,独：立生活及社会化方面的功能损伤往往也是患者及其家属关注的重点。因此,精神分裂症患者更有可能从着重于减轻残疾的干预中获益。本文对中外有效应用于精神分裂症患者的主要心理社会干预进行综述,包括认知行为治疗、社会技能训练、家庭干预、认知纠正、心理教育、职业训练、危机干预及综合心理治疗;同时就中外心理社会干预的差异进行讨论     

Interventions to Facilitate Communication in Autism

The purpose of this article is to discuss research opportunities arising from the current literature in the area of communication. Six general themes are discussed, including (a) increasing spontaneity, initiations, and the variety of functions of language verbal and nonverbal children with autism exhibit; (b) assessing and teaching precursors relating to positive outcome; (c) the importance of family involvement in intervention programs; (d) best practices for implementation of communicative interventions; (e) the interrelationship between language and other behavioral symptoms of autism; and (f) the social and pragmatic use of language. These areas are discussed in terms of improving assessment and intervention practices to produce greater long-term communicative outcomes for individuals with autism.     

The Son-Rise Program intervention for autism: an investigation into family experiences

BACKGROUND: Despite the increasing involvement of parents as therapists in interventions for their children with autism, research to date has focused almost exclusively on the outcome for the child, and little is known about the effects of involvement on the whole family. This is true even of highly intensive home-based approaches such as the Son-Rise Program (SRP), the focus of the present paper. A longitudinal questionnaire-based study is reported which investigated a number of potential positive and negative effects for the family, how these changed over time, and their relation to child characteristics and patterns of intervention implementation. METHODS: Questionnaires examining family demographics, patterns of intervention use and perceived family effects were distributed three times over the course of a year to families who had attended an initial training course in the use of the SRP. RESULTS: The results indicated that, although involvement led to more drawbacks than benefits for the families over time, family stress levels did not rise in all cases. Few relationships were found between family effects and patterns of intervention use, although there was a strong connection with parental perceptions of intervention efficacy. CONCLUSIONS: The findings of the present study emphasize the need for those supporting families using home-based interventions to consider the needs of the whole family. This may be especially important if there are periods during which the family find the intervention to be less effective. Families embarking on such intensive approaches may also benefit from considering ways in which any disruption to family life can be minimized.     

Success-based, noncoercive treatment of oppositional behavior in children from violent homes

OBJECTIVES: Errorless compliance training is a success-based, noncoercive intervention for children with severe oppositional behavior. The strategy involves hierarchical introduction of more demanding parental requests at a gradual pace that greatly reduces noncompliance and obviates the need for constraining consequences (e.g., time-out). In this study, this approach was evaluated as a treatment for severe disciplinary problems in children from violent homes. METHOD: Participants were 15 children (aged 3-10 years) and their mothers. All participants had experienced long-term family violence. Using a multiple-baseline design, the authors trained parents in a group format and conducted observations of child compliance in the home throughout the intervention. RESULTS: Observations indicated improvements in generalized child compliance that were maintained up to 6 months posttreatment. Pre-/post maternal reports indicated significant reductions in maternal perception of child noncompliance, externalizing and internalizing problems, and parenting stress. CONCLUSIONS: Researchers have noted a dearth of empirically supported interventions for children from violent homes. Errorless compliance training may help to fill this void, as it appears well suited to treatment of difficulties encountered by these youngsters and their parents.     

Intervention for autistic spectrum disorders

A comprehensive approach to the assessment of any child with autism must be matched specifically to each individual child and family. This premise holds for medical therapies and special education services as well as psychopharmacologic interventions. Behavioral, as opposed to pharmacologic, treatment is the hallmark of effective intervention for autism. Physicians involved in the care of children with autism need to become familiar with educational law and intervention recommendations. Goals should include improved functional verbal and nonverbal communication and social skills, increased engagement in developmentally appropriate activities, improved fine and gross motor skills, and the development of independent academic and organizations skills, as well as replacement of problem behaviors with developmentally appropriate behaviors. Medicating children with autism is difficult, but is often necessary for chronic behavioral difficulties. In the absence of clear and present guidelines, we have attempted to use evidence and clinical experience to suggest an algorithm based on symptom clusters. Although children with autism may be responsive to medications at lower doses and more susceptible to side effects than other children, medical intervention can produce a significant improvement in the quality of life for the child and family. Careful thought leading to correct identification of target behaviors can appropriately direct better alternatives for medication. Although these approaches are costly and time-consuming endeavors, the expenditure of such efforts is the only available pathway to improve the potential outcomes for individuals with autism as well as decrease the lifetime societal costs for each individual.     

When Asking Questions is Not Enough: An Observational Study of Social Communication Differences in High Functioning Children with Autism

This investigation examined communication patterns between high functioning children with autism and their families and typically developing children and their families within traditional dinner time conversation. Twenty families with a child with autism (3.5–7 years.) and ten families with typically developing children (3.5–6 years) were video recorded during dinner and their interactions were coded. Results revealed that children with autism initiated fewer bids for interactions, commented less often, continued ongoing interactions through fewer conversational turns, and responded less often to family member communication bids. Results are interpreted with respect to how communication patterns may be indicative of social communication deficits not previously examined in high functioning children with autism. Strategies for social communication interventions within the family and other natural contexts are discussed.     

The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid,Parent-Nominated Measure of Family Experience,Quality of Life and Prioritised Outcomes for Early Intervention

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.     

Bridging the Research-to-Practice Gap in Autism Intervention: An Application of Diffusion of Innovation Theory

There is growing evidence that efficacious interventions for autism are rarely adopted or successfully implemented in public mental health and education systems. We propose applying diffusion of innovation theory to further our understanding of why this is the case. We pose a practical set of questions that administrators face as they decide about the use of interventions. Using literature from autism intervention and dissemination science, we describe reasons why efficacious interventions for autism are rarely adopted, implemented, and maintained in community settings, all revolving around the perceived fit between the intervention and the needs and capacities of the setting. Finally, we suggest strategies for intervention development that may increase the probability that these interventions will be used in real-world settings.     

Infants at risk for autism: a European perspective on current status, challenges and opportunities

Currently, autism cannot be reliably diagnosed before the age of 2 years, which is why longitudinal studies of high-risk populations provide the potential to generate unique knowledge about the development of autism during infancy and toddlerhood prior to symptom onset. Early autism research is an evolving field in child psychiatric science. Key objectives are fine mapping of neurodevelopmental trajectories and identifying biomarkers to improve risk assessment, diagnosis and treatment. ESSEA (Enhancing the Scientific Study of Early Autism) is a COST (European Cooperation in Science and Technology) Action striving to create a European collaboration to enhance the progress of the discovery and treatment of the earliest signs of autism, and to establish European practice guidelines on early identification and intervention by bringing together European expertise from cognitive neuroscience and clinical sciences. The objective of this article is to clarify the state of current European research on at-risk autism research, and to support the understanding of different contexts in which the research is being conducted. We present ESSEA survey data on ongoing European high-risk ASD studies, as well as perceived challenges and opportunities in this field of research. We conclude that although high-risk autism research in Europe faces several challenges, the existence of several key factors (e.g., new and/or large-scale autism grants, availability of new technologies, and involvement of experienced research groups) lead us to expect substantial scientific and clinical developments in Europe in this field during the next few years.     

The Critical Period for Early Intervention

Abstract

Therapeutic intervention in psychotic disorders has been evolving steadily in recent years with notable changes in the content of treatment (e.g., atypical neuroleptics and the cognitive/psychosocial interventions) and the locus of care. While the therapeutic focus continues to emphasize acute and treatment symptoms, and longer-term interventions, for example assertive community treatment, the primary and secondary prevention of psychosis has received little attention since Cameron's (1938) pioneering work. It is now believed that the variables influencing the early phase of psychosis are sufficiently well developed to begin exploring their therapeutic implications. More speculatively, the early phase of psychosis is believed to be formative in biological, psychological, and social terms, thus affording major opportunities for secondary prevention. Three key elements of an early intervention strategy are proposed: early detection of “at-risk” mental states; early treatment of first psychotic episode; and interventions targeted during the early phase of psychosis (the “critical period”).     

Relations between specific and global outcome measures in a social-communication intervention for children with autism spectrum disorder

Assessment of relevant outcomes is a key challenge in evaluating effects of social-communication interventions. However, few studies have investigated in what ways specific and more global measures may influence reported results of social-communication interventions for children with autism spectrum disorder (ASD). In this study both a specific and a global, more global autism symptom measure were used to assess effects of a brief social-communication intervention. Fifty-nine children (2–4 years) diagnosed with autistic disorder were assessed with the Joint Engagement (JE) states coding procedure and a preliminary version of the Brief Observation of Social Communication Change (BOSCC). A statistically significant difference was found between intervention and control groups from baseline to intervention endpoint on JE but not on BOSCC. Degree of change on the measures was moderately related, and both were independent of language level and non-verbal mental age. This study adds to the knowledge of what may be expected of different outcome measures and provides suggestions to how measures may be deployed to investigate underlying mechanisms and developmental pathways.     

Autism spectrum disorders: early detection, intervention, education, and psychopharmacological management.

Our understanding and treatment of children with autism have changed dramatically since Leo Kanner first formally documented the disorder in 1943. With reference to the historical context, this paper reviews recent research addressing 4 major issues: early detection, intervention, education, and psychopharmacological management of children with autism and related (autistic) spectrum disorders (hereafter, "autism"). We conclude from our review of the evidence that, in the absence of additional, more compelling data, the clinical usefulness of existing screening instruments remains questionable. However, the potential importance of such research is underscored by the clear benefits of early behavioural intervention: despite differences in orientation, outcomes for children with autism can be significantly enhanced with early intensive intervention. Although many questions remain (notably, What are the critical therapeutic components? For whom? For what domains of development? For what level of intensity and duration?), interventions shown to be effective are all carefully planned, engineered, monitored, and designed to target specific skill domains. Including children with autism in regular classes within the public school system poses several challenges, the most pressing of which is the large number of school personnel who need to be trained in evidence-based teaching and behavioural management practices. Finally, psychotropic drugs may help to reduce some symptoms, but they are neither curative nor a substitute for other forms of support and intervention.     

The effectiveness of interventions for children with autism

Over the past 50 years very many different treatments have been promoted as bringing about significant improvements, or even cures, for children with autism. However, few interventions involve controlled studies of any kind; randomised control trials are virtually non-existent and when appropriate research methodology has been applied the results are generally far from positive. Recent research suggests that the most effective results stem from early intensive behavioural interventions. Although many questions remain concerning the optimal age at which treatment should begin, the intensity of treatment and the many other variables that may affect outcome, there is growing evidence of general strategies that can be effective in ameliorating the problems associated with autism.