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Measuring Developmental Progress of Children with Autism Spectrum Disorder on School Entry Using Parent Report
Abstract
Increasing numbers of children with autism spectrum disorder (ASD) are diagnosed in the preschool years, and their educational progress must be monitored. Parent questionnaire data can augment psychometric assessments and individual planning at low cost. One hundred and twenty-five parents of UK children who entered dedicated autism primary schools and units in two consecutive calendar years were asked to complete three questionnaires. Fifty-seven parents repeated the questionnaire measures one year later. Encouraging developmental progress was observed on the Vineland Adaptive Behavior Scales-Screener. Symptom severity as measured by the Social Communication Questionnaire did not change over time. The pattern of change scores on the Autism Treatment Evaluation Checklist was mixed, and confounding disadvantages this questionnaire. The study demonstrated that it is possible to collect useful information on the progress of children with ASD using parents as informants. Such data would assist in judging claims regarding developmental progress within particular programmes.
... Many typically developing children experience increased stress levels manifest as somatic and psychological symptoms during the school initiation. This is also a stressful time for parents because it is often the first time that a significant portion of their child's day is organized without their input (Charman et al., 2004). The problem is even bigger for children with ASD and their parents. ...
... Whilst a wide range of interventions and education programs are promoted as beneficial for children with ASD, well-designed studies in this area are few (Charman et al., 2004). Few specific programs to support the transition to school, have targeted children with disabilities rather than specifically for children with ASD. ...
... Children will eventually develop the ability to detect, discriminate, and identify sounds, as well as understand them in words and sentences. These abilities are found to be critical for the development of speech, phonological awareness, and, eventually, reading (Charman et al., 2004). Item-14, answers social questions: answering questions entails a child hearing the question, thinking about the meaning of the question, understanding the meaning of the question, forming an answer, and speaking the answer that they formed. ...
Background
There is a paucity of research on interventions targeting preschool children with autism spectrum disorders (ASD) for school readiness.
Objectives
The aim of this study is to develop and validate a school readiness module for making children with ASD ready for inclusive education and a scale to assess school readiness in them.
Methods
Based on literature review, principles of learning, and techniques of behavioural intervention, a module was developed and reviewed by independent experts regarding the utility of the contents. A scale to assess school readiness was also developed to measure the impact of administering the module on children with ASD which was also validated by the same set of experts. Lawshe’s content validity ratio was used to assess the appropriateness of each item for inclusion in the module and scale.
Results
Experts (n = 6) gave their opinion on the usefulness of the School Readiness module for children with ASD. The experts agreed that most of the content under each component were valid with the exception of identification of objects by function, identification of environmental sounds and answering social questions. Similarly, in the school readiness scale there was good agreement for all items except for 1 item under domain 2 and 2 items under domain 5.
Conclusion
A school readiness module and a scale to assess school readiness based on interventions provided as per the school readiness module were developed and validated. Further studies are needed to assess the utility of the module and scale in children with ASD.
... Seven studies evaluated versions of the Vineland Adaptive Behavior Scales (VABS) (e.g. Charman et al. 2004;Harris et al. 1995). Four studies considered the Aberrant Behavior Checklist (ABC) (e.g. Brown et al. 2002;Kaat et al. 2014;Siegel et al. 2013) Rev J Autism Dev Disord and current or previous versions of AAMR Adaptive Behavior Scale-II (AAMR ABS-II) (e.g. ...
... PDD-Behavior Inventory; Autism Treatment Evaluation Checklist). Four studies (Charman et al. 2004;Lane et al. 2013;Perry and Factor 1989;Wells et al. 2009) reported on more than one assessment. The focus of the included assessments fell into four categories: adaptive behaviour including adaptive functioning (n = 10), problem or challenging behaviour (n = 4), autismrelated behaviour (n = 6) and both adaptive and problem or maladaptive behaviour (n = 6). ...
... Six assessments measured autism-related behaviour: the Autism Behavior Inventory (ABI) (Bangerter et al. 2017 (Neil et al. 2017). The ABI, AIM, ATEC and the TAPS all considered the assessments' abilities to capture progress and change (Bangerter et al. 2017;Charman et al. 2004;Dang et al. 2017;Kanne et al. 2014). The RBS-R was devised specifically to assess RRBs of autistic individuals and also suggested potential usefulness in measuring intervention outcomes (Lam and Aman 2007). ...
A systematic review was completed to identify assessments used with children with intellectual disabilities to assess adaptive behaviour, challenging behaviour and autism-related behaviour and consider their appropriateness for use by special education teachers with autistic pupils. The findings of this review led to the recommendation that the Pervasive Development Disorder Behavior Inventory, Aberrant Behavior Checklist, Autism Treatment Evaluation Checklist and the Teacher Autism Progress Scale are currently the most appropriate assessments for these purposes, although some limitations of these assessments exist. Additional recommendations included teacher input during the development of robust assessments to show progress for autistic children with intellectual disabilities and further evaluation of commonly used assessments with an appropriate sample in a relevant education setting.
... Expressive language, sociability, sensory awareness, and health were assessed by Autism Treatment Evaluation Checklist (ATEC) (Rimland & Edelson, 1999), a measure validated for longitudinal tracking of symptoms and assessing changes in ASD severity (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra et al., 2018). The expressive language subscale of ATEC consists of 14 items; the sociability subscale contains 20 items; the sensory awareness subscale has 18 items; and the health subscale contains 25 items. ...
... The researchers noted ATEC's high level of internal consistency as well as a high correlation with other standardized assessments used to measure the same capacities in children with ASD (Magiati et al., 2011). Charman et al. utilized ATEC amongst other measures to test the feasibility of tracking the longitudinal changes in children using caregiver-administered questionnaires and noted differential effects across subscales of ATEC, possibly driven by development-focused vs. symptomfocused subscales that are conflated in the ATEC total score (Charman et al., 2004). Another study assessing the ability of dietary intervention to affect ASD symptoms also utilized ATEC as a primary measure (Klaveness et al., 2013), concluding that it has "high general reliability" coupled with an ease of access. ...
The effect associated with the presence of seizures in 2 to 5-year-old autistic children was investigated in the largest and the longest observational study to-date. Parents assessed the development of 8461 children quarterly for three years on five orthogonal subscales: combinatorial receptive language, expressive language, sociability, sensory awareness, and health. Seizures were reported in 958 children (11%). In order to investigate the effect of seizures, children with seizures were matched to those with no seizures using propensity score based on age, gender, expressive language, receptive language, sociability, sensory awareness, and health at the 1st evaluation. The number of matched participants was 955 in each group. Children with no seizures developed faster compared to matched children with seizures in all subscales. On an annualized basis, participants with no seizures improved their receptive language 1.5-times faster than those with seizures; expressive language: 1.3-times faster; sociability: 2.3-times faster; sensory awareness: 6.2-times faster; and health: 20.0-times faster. This study confirms a high prevalence of seizures in ASD children and informs on the effect of seizures on children’s longitudinal developmental trajectories.
... Expressive language, sociability, sensory awareness, and health were assessed by Autism Treatment Evaluation Checklist (ATEC) (Rimland & Edelson, 1999), a measure validated for longitudinal tracking of symptoms and assessing changes in ASD severity (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra, Khokhlovich, et al., 2018). The expressive language subscale of ATEC consists of 14 items; the sociability subscale contains 20 items; the sensory awareness subscale has 18 items; and the health subscale contains 25 items. ...
... In contrast, another popular ASD assessment tool, Autism Diagnostic Observation Schedule or ADOS, (Lord et al., 2000) has only been validated as a diagnostic tool. Various studies confirmed the validity and reliability of ATEC (Al Backer, 2016;Geier et al., 2013;Jarusiewicz, 2002) and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra, Khokhlovich, et al., 2018). Whitehouse et al. used ATEC as a primary outcome measure for a randomized controlled trial of their iPad-based intervention for ASD, named "Therapy . ...
The effect of pretend play in 2 to 5-year-old children with ASD was investigated in the largest and the longest observational study to-date. Parents assessed the development of 7,069 children quarterly for three years on five subscales: combinatorial receptive language, expressive language, sociability, sensory awareness, and health. Pretend play was associated with superior developmental trajectories: 1.9-fold faster improvement of combinatorial receptive language (p<0.0001), 1.4-fold faster improvement of expressive language (p<0.0001), and 1.3-fold faster improvement of sensory awareness (p=0.0009). Pretend play had little effect on sociability and health. The strong association of pretend play with combinatorial receptive language remained significant even when controlling for expressive language. Similarly, the effect of pretend play on expressive language remained significant even when controlling for combinatorial receptive language. The effect of pretend play on combinatorial receptive language (but not on the expressive language) was stronger than the effects of seizures, sleep problems or high-TV exposure. The strong effect of pretend-play supports earlier studies indicating that it is an important stepping stone for language acquisition, particularly, the acquisition of combinatorial language.
... The researchers noted ATEC's high level of internal consistency as well as a high correlation with other standardized assessments used to measure the same capacities in children with ASD (Magiati et al. 2011). Charman et al. utilized ATEC amongst other measures to test the feasibility of tracking the longitudinal changes in children using caregiver-administered questionnaires and noted differential effects across subscales of ATEC, possibly driven by development-focused vs. symptom-focused subscales that are conflated in the ATEC total score (Charman et al. 2004). Another study assessing the ability of dietary intervention to affect ASD symptoms also utilized ATEC as a primary measure (Klaveness et al. 2013), concluding that it has "high general reliability" coupled with an ease of access. ...
... As noted by other groups (Whitehouse et al. 2017;Charman et al. 2004), the use of ATEC as a primary outcome measure has some inherent drawbacks. While the ATEC is capable of delineating incremental differences in ASD severity amongst participants, the variety of measures amongst its subscales fails to differentiate developmental-specific changes from symptom-specific ones. ...
Here we report the results of the subgroup analyses of an observational cohort of children whose parents completed the Autism Treatment Evaluation Checklist (ATEC) over the period of several years. A linear mixed effects model was used to evaluate longitudinal changes in ATEC scores within different patient subgroups. All groups decreased their mean ATEC score over time indicating improvement of symptoms, however there were significant differences between the groups. Younger children improved more than the older children. Children with milder ASD improved more than children with more severe ASD in the Communication subscale. There was no difference in improvement between females vs. males. One surprising finding was that children from developed English-speaking countries improved less than children from non-English-speaking countries.
... The researchers noted ATEC's high level of internal consistency as well as a highly correlative relationship with other standardized assessments used to measure the same capacities in children with ASD [7]. Charman et al. utilized ATEC amongst other measures in testing the feasibility of caregiver-administered questionnaires to track longitudinal changes in children and noted differential effects across subscales of ATEC in the data collected, possibly driven by development-focused vs. symptom-focused subscales [8]. Another study assessing the ability of dietary intervention to affect ASD symptoms also utilized ATEC as a primary measure [9], concluding that it has "high general reliability" coupled with an ease of access. ...
... As noted previously by other groups [8,10], the use of ATEC as a primary outcome measure has some inherent drawbacks. While the ATEC is capable of delineating incremental differences in ASD severity amongst participants, the variety of measures amongst its subscales fails to differentiate developmental-specific from symptom-specific changes. ...
Most early-intervention Autism Spectrum Disorder (ASD) clinical trials are limited by the availability of psychometric technicians who assess each child's abilities before and after therapeutic intervention. If parents could administer regular psychometric evaluations of their children, then the cost of clinical trials will be reduced, enabling longer clinical trials with the larger number of participants. The Autism Treatment Evaluation Checklist (ATEC) was designed nearly two decades ago to provide such a tool, but the norms on the longitudinal changes in ATEC in the "treatment as usual" population were lacking. Here we report the norms of the observational cohort who voluntarily completed ATEC evaluations over the period of four years from 2013 to 2017.
... The CARS, Second edition (CARS-2) is a more recently published clinician-completed rating also used to determine ASD symptom severity [162]. The CARS-2 is suitable for evaluating shorter-term effects; its reliability [160,163,164], validity [165,166], and lack of application to trials in FXS place it at the limited tool quality level. ...
... The SCQ is adequate for evaluating shorterterm outcomes. SCQ's reliability [173,174] and validity ( [163]; reviewed in [12]) support the limited tool quality level. (5)Repetitive Behavior Scale-Revised (RBS-R). ...
Objective
Fragile X syndrome (FXS) has been the neurodevelopmental disorder with the most active translation of preclinical breakthroughs into clinical trials. This process has led to a critical assessment of outcome measures, which resulted in a comprehensive review published in 2013. Nevertheless, the disappointing outcome of several recent phase III drug trials in FXS, and parallel efforts at evaluating behavioral endpoints for trials in autism spectrum disorder (ASD), has emphasized the need for re-assessing outcome measures and revising recommendations for FXS.
Methods
After performing an extensive database search (PubMed, Food and Drug Administration (FDA)/National Institutes of Health (NIH)’s www.ClinicalTrials.gov, etc.) to determine progress since 2013, members of the Working Groups who published the 2013 Report evaluated the available outcome measures for FXS and related neurodevelopmental disorders using the COSMIN grading system of levels of evidence. The latter has also been applied to a British survey of endpoints for ASD. In addition, we also generated an informal classification of outcome measures for use in FXS intervention studies as instruments appropriate to detect shorter- or longer-term changes.
Results
To date, a total of 22 double-blind controlled clinical trials in FXS have been identified through www.ClinicalTrials.gov and an extensive literature search. The vast majority of these FDA/NIH-registered clinical trials has been completed between 2008 and 2015 and has targeted the core excitatory/inhibitory imbalance present in FXS and other neurodevelopmental disorders. Limited data exist on reliability and validity for most tools used to measure cognitive, behavioral, and other problems in FXS in these trials and other studies. Overall, evidence for most tools supports a moderate tool quality grading. Data on sensitivity to treatment, currently under evaluation, could improve ratings for some cognitive and behavioral tools. Some progress has also been made at identifying promising biomarkers, mainly on blood-based and neurophysiological measures.
Conclusion
Despite the tangible progress in implementing clinical trials in FXS, the increasing data on measurement properties of endpoints, and the ongoing process of new tool development, the vast majority of outcome measures are at the moderate quality level with limited information on reliability, validity, and sensitivity to treatment. This situation is not unique to FXS, since reviews of endpoints for ASD have arrived at similar conclusions. These findings, in conjunction with the predominance of parent-based measures particularly in the behavioral domain, indicate that endpoint development in FXS needs to continue with an emphasis on more objective measures (observational, direct testing, biomarkers) that reflect meaningful improvements in quality of life. A major continuous challenge is the development of measurement tools concurrently with testing drug safety and efficacy in clinical trials.
... Additionally, caregiver responses to the ATEC 43 questionnaire were used to assess children's expressive language, sociability, sensory awareness, and health (Tables S2-S6). Various studies confirmed validity and reliability of ATEC 46,47 and several trials confirmed ATEC's ability to measure longitudinal changes [48][49][50][51] . Whitehouse et al. used ATEC as a primary outcome measure for a randomized controlled trial of their iPad-based intervention for ASD named TOBY and noted ATEC's "internal consistency and adequate predictive validity" 52 . ...
Autism is a neurodevelopmental condition characterized by deficits in social communication. We assessed 14-language comprehension abilities in 31,845 autistic individuals 4 to 21 years of age using parent-generated reports. Data-driven cluster analysis identified three distinct levels of language comprehension: (1) individuals in the command-language-phenotype were limited to comprehension of simple commands; (2) individuals in the modifier-language-phenotype showed additional comprehension of color, size, and number modifiers; 3) individuals in the most-advanced syntactic-language-phenotype added comprehension of spatial prepositions, verb tenses, flexible syntax, possessive pronouns, and complex narratives. The observation of three distinct language levels was consistent across different age groups. Autistic individuals’ communication level is currently commonly characterized as nonverbal , minimally-verbal , or verbal . This one-dimensional description is not ideal for characterizing an individual’s communication ability. In fact, a nonverbal individual with syntactic-language-phenotype may have normal ability to communicate albeit nonverbally, while a verbal person with command-language-phenotype does not have a normal ability to communicate by any means. Identification of the three distinct language-comprehension-phenotypes provides an opportunity to enhance characterization of individuals’ communication level. A composite description in terms of both, verbal abilities and a language-comprehension-level, will not only be more precise, but can improve language therapy by focusing it on both aspects of language development.
... The ATEC has four subscales, as follows: expressive language, sociability, sensory awareness, and health (Tables S1-S4). Various studies have confirmed the validity and reliability of the ATEC [17,18] and several trials have confirmed the ATEC's ability to measure longitudinal change in participant performance [19][20][21][22]. Whitehouse and colleagues employed the ATEC as the primary outcome measure in their randomized controlled trial investigating the efficacy of their iPad-centered intervention for ASD, known as TOBY, and noted the ATEC's "internal consistency and adequate predictive validity" [15]. ...
This study compares two parent reports, the Mental Synthesis Evaluation Checklist (MSEC) and the Autism Treatment Evaluation Checklist (ATEC), with the Childhood Autism Rating Scale (CARS). The ATEC consists of four subscales, as follows: (1) expressive language, (2) sociability, (3) sensory awareness, and (4) health. The MSEC is complementary to the ATEC in measuring complex language comprehension. The parents of 143 autistic children, from 2 to 22 years of age (mean 6.7 ± 5.1 years), completed the MSEC and the ATEC questionnaires and a clinician assessed their CARS score. The CARS score correlated strongly with all parent reports, the complex language comprehension MSEC (r = 0.60, p < 0.0001), expressive language (r = 0.66, p < 0.0001), sociability (r = 0.58, p < 0.0001), sensory awareness (r = 0.71, p < 0.0001), and health (r = 0.53, p < 0.0001), as well as the total ATEC score (r = 0.75, p < 0.0001). The strongest correlation was between the CARS score and the composite of all five parent-reported scores (total ATEC + MSEC, r = 0.77, p < 0.0001). These results suggest a high fidelity of the MSEC and ATEC parent reports and especially of their composite score, total ATEC + MSEC.
... Therefore, it is yet to establish when a child with ASD is ready for school and what type of his behavior will have the impact on his studies. For this, it is critical to collect and consolidate the present evidence on the types of provisions required by children with ASD, their families and schools, and specific interventions and individual issues that help to enable an optimistic start to school and successful academic performance (Charman, 2004). ...
This research has explored the differential classroom behaviours of children with autism exhibited during their studies during class time. The study used a sequential exploratory design. The study was conducted in the district of Lahore to develop an indigenous tool to investigate the differential classroom behaviors of children with autism. With the help of related literature and in-depth interviews of teachers working with autism for the last 5 years, a tool was developed. The self-developed tool was validated by 5 experts from the relevant field. A sample of 100 teachers was recruited using the purposive sampling technique and the data was collected by using the indigenously developed scale. Exploratory factor analysis was run to find out the emerging factors related to differential classroom behaviors. The analysis revealed that there was a total of eight factors related to differential classroom behaviors of students with autism. The factors included communication deficit, inattentiveness, impulsiveness, lack of socialization, academic approach, acting out behaviors, sensory issues and Restrictive and Repetitive Behaviors. Future studies are needed to investigate the reasons behind the differences in the behaviors of students with autism and how these differences affect their overall functioning.
... Children with autism spectrum disorder (ASD) typically have co-occurring impairments in verbal and nonverbal communication (American Psychiatric Association [APA], 2013), resulting in language difficulties that affect both receptive and expressive language skills (APA, 2013;Charman et al., 2004). The expressive language of children with ASD can be significantly delayed or disordered (APA, 2013; Mody et al., 2013;Paul & Roth, 2011). ...
JUST PUBLISHED
Purpose: The purpose of this multiple probe design was: a) to investigate if the use of the match-to-sample procedure would result in independent identification of objects and b) to examine if the participants could generalize to matching objects and non-identical pictures.
Method: Using a non-concurrent multiple baseline design, three minimally verbal preschoolers with autism and receptive language impairment, were taught to identify common objects using a match-to-sample procedure and physical prompts. Participants were taught to match identical objects to identical pictures. Maintenance checks were completed following mastery of vocabulary for a total of 22 words. Generalization probes were conducted with the objects and non-identical pictures. Intervention was completed by a speech-language pathologist during typical SLP sessions.
Results: Results illustrated that all of the participants learned to match and generalize the pictures. All were able to independently identify the objects at one month follow up.
Conclusions: Match-to-sample and prompting appear to be effective procedures for teaching receptive vocabulary and can be easily implemented by education professionals. Learner profiles varied for the participants in this study and are an important aspect when teaching
... The researchers noted ATEC's high level of internal consistency as well as a high correlation with other standardized assessments used to measure the same capacities in children with ASD (Magiati et al., 2011). Charman et al. utilized ATEC amongst other measures to test the feasibility of tracking the longitudinal changes in children using caregiver-administered questionnaires and noted differential effects across subscales of ATEC, possibly driven by development-focused vs. symptom-focused subscales that are conflated in the ATEC total score (Charman et al., 2004). Another study assessing the ability of dietary intervention to affect ASD symptoms also utilized ATEC as a primary measure (Klaveness et al., 2013), concluding that it has "high general reliability," coupled with an ease of access. ...
Purpose The purpose of this research was to investigate the impact of dietary factors on developmental trajectories in young
autistic children.
Methods A gluten-free and casein-free diets, as well as six types of food (meat and eggs, vegetables, uncooked vegetables,
sweets, bread, and “white soft bread that never molds”) were investigated observationally for up to three years in 5,553 children 2 to 5 years of age via parent-report measures completed within a mobile application. Children had a parent-reported
diagnosis of Autism Spectrum Disorder (ASD); 78% were males; the majority of participants resided in the USA. Outcome
was monitored on five orthogonal subscales: Language Comprehension, Expressive Language, Sociability, Sensory Awareness, and Health, assessed by the Autism Treatment Evaluation Checklist (ATEC) (Rimland & Edelson, 1999) and Mental
Synthesis Evaluation Checklist (MSEC) (Arnold & Vyshedskiy, 2022; Braverman et al., 2018).
Results Consumption of fast-acting carbohydrates – sweets, bread, and “white soft bread that never molds” – was associated
with a significant and a consistent Health subscale score decline. On the contrary, a gluten-free diet, as well as consumption
of meat, eggs, and vegetables were associated with a significant and consistent improvement in the Language Comprehension score. Consumption of meat and eggs was also associated with a significant and consistent improvement in the Sensory
Awareness score.
Conclusion The results of this study demonstrate a strong correlation between a diet and developmental trajectories and suggest possible dietary interventions for young autistic children.
... ATEC was selected because it is one of the few measures validated to evaluate treatment effectiveness. Various studies confirmed the validity and reliability of ATEC (Geier et al., 2013;Jarusiewicz, 2002) and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra et al., 2020). Whitehouse et al. used ATEC as a primary outcome measure for a randomized controlled trial of their iPad-based intervention for ASD, named 'Therapy Outcomes By You' or TOBY, and noted ATEC's 'internal consistency and adequate predictive validity' (Whitehouse et al., 2017). ...
... The researchers noted ATEC's high level of internal consistency as well as a high correlation with other standardized assessments used to measure the same capacities in children with ASD (Magiati et al., 2011). Charman et al. utilized ATEC amongst other measures to test the feasibility of tracking the longitudinal changes in children using caregiver-administered questionnaires and noted differential effects across subscales of ATEC, possibly driven by development-focused vs. symptomfocused subscales that are conflated in the ATEC total score (Charman et al., 2004). Another study assessing the ability of dietary intervention to affect ASD symptoms also utilized ATEC as a primary measure (Klaveness et al., 2013), concluding that it has "high general reliability" coupled with an ease of access. ...
Parents assessed the development of 12,081 two- to six-year-old children with Autism Spectrum Disorder (ASD) quarterly for three years on five subscales: combinatorial receptive language, expressive language, sociability, sensory awareness, and health. Longer duration of time spent with an adult actively involved in the same activity (termed here joint engagement) was associated with improved trajectory of combinatorial receptive language, expressive language, and sensory awareness. On the annualized basis, the high-joint-engagement group (3 h or more of joint engagement per day) improved their combinatorial receptive language 1.4-times faster (p = 0.0019), expressive language 1.5-times faster (p < 0.0001), and sensory awareness 1.5-times faster (p = 0.0248) than the low-joint-engagement group (1 h or less joint engagement per day). The difference in the sociability and the health scores at the end of 3-year study was insignificant. This study confirms the importance of autistic children spending more time with adults actively involved in the same activity and highlights the need to include joint engagement as a target for intervention with this population.
... Therefore, it is yet to establish when a child with ASD is ready for school and what type of his behavior will have the impact on his studies. For this, it is critical to collect and consolidate the present evidence on the types of provisions required by children with ASD, their families and schools, and specific interventions and individual issues that help to enable an optimistic start to school and successful academic performance (Charman, 2004). ...
This research has explored the differential classroom behaviours of children with autism exhibited during their studies during class time. The study used a sequential exploratory design. The study was conducted in the district of Lahore to develop an indigenous tool to investigate the differential classroom behaviors of children with autism. With the help of related literature and in-depth interviews of teachers working with autism for the last 5 years, a tool was developed. The self-developed tool was validated by 5 experts from the relevant field. A sample of 100 teachers was recruited using the purposive sampling technique and the data was collected by using the indigenously developed scale. Exploratory factor analysis was run to find out the emerging factors related to differential classroom behaviors. The analysis revealed that there was a total of eight factors related to differential classroom behaviors of students with autism. The factors included communication deficit, inattentiveness, impulsiveness, lack of socialization, academic approach, acting out behaviors, sensory issues and Restrictive and Repetitive Behaviors. Future studies are needed to investigate the reasons behind the differences in the behaviors of students with autism and how these differences affect their overall functioning.
... ; https://doi.org/10. 1101 confirmed the validity and reliability of ATEC (Geier et al., 2013;Jarusiewicz, 2002) and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra, Khokhlovich, et al., 2018). Moreover, ATEC has been used as a primary outcome measure for a randomized controlled trial of iPad-based intervention for ASD, named "Therapy Outcomes By You" or TOBY, and it was noted that ATEC possesses an "internal consistency and adequate predictive validity" (Whitehouse et al., 2017). ...
The effect of joint engagement in 2- to 6-year-old children with ASD was investigated in the largest and the longest observational study to-date. Parents assessed the development of 12081 children quarterly for three years on five subscales: receptive language, expressive language, sociability, sensory awareness, and health. Longer duration of time spent with an adult actively involved in the same activity was associated with improved trajectory of receptive language, expressive language, and sensory awareness. On the annualized basis, the high-joint-engagement group (3 hours or more of joint engagement per day) improved their combinatorial receptive language 1.4-times faster ( p =0.0019), expressive language 1.5-times faster (p<0.0001), and sensory awareness 1.5-times faster ( p =0.0248) than the low-joint-engagement group (1 hour or less joint engagement per day). The difference in the sociability and the health scores at the end of 3-year study was insignificant. This study confirms the importance of ASD children spending more time with adults actively involved in the same activity and highlights the need to include joint engagement as a target for intervention with this population.
Lay summary
Parents of 2- to 6-year-old children with ASD assessed the development of 12081 children quarterly for three years. Longer duration of time spent with an adult actively involved in the same activity was associated with improved developmental trajectory. This study confirms the importance of ASD children spending more time with adults actively involved in the same activity and highlights the need to include joint engagement as a target for intervention with this population.
... However, Voelker et al., (2007) found higher skills estimates on classroom than survey forms when both were completed by teachers, suggesting that our education professional scores may not have been impacted by lower floors. Risk of method variance could be reduced in future by using the same rating form for parents and education professionals (Voelker et al., 2007;Charman et al., 2004). ...
Adaptive functioning of autistic children is traditionally measured through informant-report, often from parents. Behaviour varies across settings though, and context-specific reports should be considered. Limited and inconsistent results show low parent-education professional concordance, but no research has yet explored item level response variation. We investigated Vineland Adaptive Behaviour Scales-II concordance using 233 lower ability autistic children from the PACT-G sample. Domain and item level agreement was low, but better on objectively measured behaviours. Higher child nonverbal ability improved concordance. Where disagreements occurred, education professionals identified emergent skills more and parents were more likely to rate present/absent. Parents and education professionals view the adaptive abilities of autistic children differently and both should be considered when developing personalised interventions and support.
... In contrast, another popular ASD assessment tool, Autism Diagnostic Observation Schedule or ADOS, (Lord et al., 2000) has only been validated as a diagnostic tool. Various studies confirmed the validity and reliability of ATEC (Geier et al., 2013;Jarusiewicz, 2002) and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra, Khokhlovich, et al., 2018). Moreover, ATEC has been used as a primary outcome measure for a randomized controlled trial of iPad-based intervention for ASD, named "Therapy Outcomes By You" or TOBY, and it was noted that ATEC possesses an "internal consistency and adequate predictive validity" (Whitehouse et al., 2017). ...
The effect of sleep problems in 2- to 5-year-old children with ASD was investigated in the largest and the longest observational study to-date. Parents assessed the development of 7069 children quarterly for three years on five orthogonal subscales: receptive language, expressive language, sociability, sensory awareness, and health. Moderate and severe sleep problems were reported in 13% of children. Children with no sleep problems developed faster compared to matched children with sleep problems in all subscales. The greatest difference in trajectories was detected in the health subscale. When controlling for the health score (in addition to each subscale score at baseline as well as gender and severity), the effect of sleep problems decreased in all subscales except the combinatorial receptive language subscale (where the effect of sleep problems was increased), suggesting that sleep problems affect combinatorial language acquisition irrespective of the overall health. This study confirms a high prevalence of sleep problems in ASD children and points to the need for more systematic research as an initial step in developing treatment strategies.
... Various studies confirmed the validity and reliability of ATEC (Al Backer, 2016;Geier et al., 2013;Jarusiewicz, 2002) and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance (Charman et al., 2004;Klaveness et al., 2013;Magiati et al., 2011;Mahapatra, Khokhlovich, et al., 2018). Moreover, ATEC has been used as a primary outcome measure for a randomized controlled trial of iPad-based intervention for ASD, named "Therapy Outcomes By You" or TOBY, and it was noted that ATEC's possesses an "internal consistency and adequate predictive validity" (Whitehouse et al., 2017). ...
The effect of seizures in 2 to 5-year-old children with ASD was investigated in the largest and the longest observational study to-date. Parents assessed the development of 8461 children quarterly for three years on five orthogonal subscales: combinatorial receptive language, expressive language, sociability, sensory awareness, and health. Seizures were reported in 11% of children. Children with no seizures developed faster compared to matched children with seizures in all subscales. On an annualized basis, participants with no seizures improved their receptive language 1.5-times faster than those with seizures; expressive language: 1.3-times faster; sociability: 2.3-times faster; sensory awareness: 6.2-times faster; and health: 20.0-times faster. This study confirms a high prevalence of seizures in ASD children and points to the need for more systematic approach to the development of treatment strategies.
... Furthermore, both tools could be suitable for children with neurodevelopmental disorders and not just ASD. Even though the ATEC was designed with ASD in mind, many of its items assess development more generally (Charman et al., 2004). ...
Lay abstract:
Although most children with autism and other neurodevelopmental disorders live in low- and middle-income countries, reliable tools to assess these conditions are often not available in these settings. In this study, we adapted two questionnaires developed in Western high-income contexts for use in Ethiopia - the Autism Treatment Evaluation Checklist and the Pediatric Quality of Life Inventory™ Family Impact Module. Both measures are completed by a child's caregiver and both are relatively short and easy to complete. The Autism Treatment Evaluation Checklist is used to monitor the developmental issues of the child, while the Pediatric Quality of Life Inventory™ Family Impact Module measures the impact of the child's condition on the caregiver. We translated both tools into the Ethiopian language Amharic, and adapted them to the local cultural context. Three hundred caregivers, half of whom were parents of children with neurodevelopmental disorders, and half were parents of children with physical health problems, completed the questionnaires through a face-to face interview, so that non-literate caregivers could also take part. Both tools performed adequately, measured what we aimed to measure and were reliable. Both the Autism Treatment Evaluation Checklist and Pediatric Quality of Life Inventory™ are suitable tools to assess children with developmental and other health problems in Ethiopia and their caregivers. We believe that more similar tools should be developed or adapted for use in low-income countries like Ethiopia, to gain a better understanding of developmental problems in those settings, and allowing clinicians and service providers to use these tools in their practice. Moreover, these tools can be used in future studies to evaluate interventions to improve support for families.
... However, parent surveys are a reliable source of information about the living environment of children, in particular children with special needs. There are a lot of studies that generate their data on children with ASD through parent surveys [1,[86][87][88][89][90][91]. Nonetheless, future studies would benefit from involving the children's perspective. ...
In der vorliegenden kumulativen Dissertation werden das Freizeitverhalten und in diesem Zusammenhang stehende Einflüsse sowie die Freizeitmöglichkeiten autistischer Kinder und Jugendlicher untersucht. Da zum Freizeitverhalten autistischer Kinder und Jugendlicher kaum methodisch belastbare Untersuchungen aus Deutschland vorliegen, bilden sowohl die aktive als auch die passive Freizeitgestaltung ein zentrales Element in den einzelnen Studien. Es wird zunächst der Frage nachgegangen, inwieweit eine passive Freizeitgestaltung für autistische Kinder und Jugendliche eine Rolle spielt und welche funktionale Bedeutung diese hat (Studie I+II). Anschließend wird sich mit der Frage beschäftigt, ob ein Zusammenhang zwischen aktiver bzw. passiver Freizeitgestaltung und der Lebensqualität autistischer Kinder und Jugendlicher besteht, und welche Rolle Eltern dabei spielen können (Studie III). Zusätzlich wird sich näher mit den Freizeitmöglichkeiten auseinandergesetzt und der Frage nachgegangen, wie zufrieden Eltern autistischer Kinder mit den angebotenen Freizeitmöglichkeiten für ihre Kinder sind und was sie sich in diesem Zusammenhang für ihre autistischen Kinder wünschen (Studie IV). Auf Basis dieser einzelnen Studien und deren Diskussion wird sich abschließend mit der Frage auseinandergesetzt, inwieweit autistischen Kindern und Jugendlichen im Sinne der UN-Behindertenrechtskonvention (Art. 30 UN-BRK: Teilnahme am kulturellen Leben) sowie des Bundesteilhabegesetzes (§§76, 78 BTHG) eine gleichberechtigte Teilhabe in Deutschland ermöglicht wird (Studien I bis IV). Die Daten basieren auf einem Mixed-Methods-Ansatz. So wurden neben einem systematischen Review, qualitative Interviews (N = 13) sowie eine quantitative Befragung von Eltern autistischer Kinder und Jugendlicher (N = 327) durchgeführt. Insgesamt deuten die Ergebnisse der einzelnen Studien in Verbindung mit der sich anschließenden Diskussion darauf hin, dass eine gleichberechtigte Teilhabe für autistische Kinder und Jugendliche gemäß UN-BRK und BTHG im Freizeitsektor noch nicht erreicht ist. So ermöglicht eine passive Freizeitgestaltung in der untersuchten Kohorte zwar durchaus Zugänge, um spezifische Freizeitbedürfnisse zu befriedigen (z.B. Entspannung, Zugehörigkeit; Studie I+II); jedoch scheint diese im Gegensatz zur aktiven Freizeitgestaltung und der sozialen Unterstützung, die Eltern erhalten, nicht entscheidend für den Selbstwert sowie für die Lebensqualität des autistischen Kindes bzw. Jugendlichen zu sein (Studie III). Alternative Freizeitangebote stehen autistischen Kindern und Jugendlichen allerdings laut den Aussagen der befragten Eltern nur sehr begrenzt zur Verfügung (Studie IV). Mit Inkrafttreten des BTHG Ende des Jahres 2016 wurden weitere Möglichkeiten für eine gleichberechtigte Teilhabe geschaffen (z.B. Eingliederungshilfeleistungen zur sozialen Teilhabe). Es bleibt abzuwarten, wie diese in Zukunft zielführend umgesetzt werden (können).
... Many assessments used in schools are not developed specifically for the needs of autistic pupils and few assessments included in the review were developed with input and in collaboration with teachers even though this is important to ensure sufficient content validity (Howell, Bradshaw, & Langdon, 2020b, 2021. A small number of assessments included in the review showed potential for measuring outcomes in barriers to learning for autistic pupils in special schools, for example the Teacher Autism Progress Scale (TAPS; Dang et al., 2017) and Autism Treatment Evaluation Checklist (ATEC; Charman, Howlin, Berry, & Prince, 2004;Magiati, Moss, Yates, Charman, & Howlin, 2011). Both the TAPS and the ATEC were developed as autism-specific outcome assessments and can be used by teachers. ...
Background
Few robust autism-specific outcome assessments have been developed specifically for use by teachers in special schools. The Assessment of Barriers to Learning in Education – Autism (ABLE-Autism) is a newly developed teacher assessment to identify and show progress in barriers to learning for pupils on the autism spectrum with coexisting intellectual disabilities.
Aims
This study aimed to conduct a preliminary validity and reliability evaluation of the ABLE-Autism.
Methods and procedures
Forty-eight autistic pupils attending special schools were assessed using the ABLE-Autism. Multi-level modelling was used to evaluate test-retest reliability, internal consistency and convergent validity with the Teacher Autism Progress Scale.
Outcomes and results
Results showed excellent test-retest reliability and internal consistency. A large effect size suggested that the ABLE-Autism is strongly correlated with the Teacher Autism Progress Scale. Teacher feedback was positive and suggested that the ABLE-Autism is easily understood by teachers, relevant to autistic pupils in special schools, and adequately covers the skills and behaviours that teachers believe are important to assess for these pupils.
Conclusions and implications
Although further validation is recommended, the preliminary evaluation of the ABLE-Autism suggests that it is a useful and has the potential to be an effective outcome assessment for autistic pupils in special schools.
... In contrast, another popular ASD assessment tool, Autism Diagnostic Observation Schedule or ADOS [20], has only been validated as a diagnostic tool. Various studies have confirmed the validity and reliability of ATEC [21][22][23], and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance [19,[24][25][26]. Whitehouse et al. used ATEC as a primary outcome measure for a randomized controlled trial of their iPad-based intervention for ASD, named "Therapy Outcomes By You" or TOBY, and noted ATEC's "internal consistency and adequate predictive validity" [27]. ...
The effect of passive video and television watching duration on 2- to 5-year-old children with autism was investigated in the largest and the longest observational study to date. Parents assessed the development of 3227 children quarterly for three years. Longer video and television watching were associated with better development of expressive language but significantly impeded development of complex language comprehension. On an annualized basis, low TV users (low quartile: 40 min or less of videos and television per day) improved their language comprehension 1.4 times faster than high TV users (high quartile: 2 h or more of videos and television per day). This difference was statistically significant. At the same time, high TV users improved their expressive language 1.3 times faster than low TV users. This difference was not statistically significant. No effect of video and television watching duration on sociability, cognition, or health was detected.
... Auch andere Untersuchungen wählten ein solches Vorgehen (z. B. Brereton, Tonge, Einfeld, 2006;Charman, Howlin, Berry, Prince, 2004;Corvey, Menear, Preskitt, Goldfarb, Menachemi, 2016;Maskey, Warnell, Parr, Le Couteur, McConachie, 2013;McCoy, Jakicic, Gibbs, 2016;Montes, 2016;Wagner, Newman, Cameto, Garza, Levine, 2005). Dennoch ist unbestreitbar, dass bei der Angabe der Wünsche nach spezifischen Freizeitangeboten auch die Bedürfnisse der Eltern eine Rolle spielten (bspw. ...
Autistische Kinder und Jugendliche haben ein Recht auf eine gleichberechtigte Teilhabe am kulturellen Leben sowie an Erholungs-, Freizeit- und Sportaktivitäten, wofür geeignete Maßnahmen getroffen werden müssen (Art. 30 UN-BRK, §§76, 78 BTHG). Untersuchungen aus Deutschland, die sich spezifisch mit den Bedürfnissen an Freizeitangeboten für autistische Kinder und Jugendliche befassen, liegen nicht vor. So ist bisher unklar, inwieweit autistischen Kindern und Jugendlichen eine gleichberechtigte Teilhabe in Deutschland ermöglicht wird. Mit der vorliegenden Untersuchung wurde sich auf Basis einer Online-Befragung mit Eltern autistischer Kinder und Jugendlicher (N = 327) einer Einschätzung angenähert. So ist zusammenfassend von einem hohen Bedarf an Freizeitangeboten auszugehen, wobei Eltern von Kindern mit dem Asperger-Syndrom verglichen mit Eltern von Kindern mit frühkindlichem und atypischem Autismus weniger Bedarf äußerten. Dennoch ist davon auszugehen, dass wir noch weit von einer gleichberechtigten Teilhabe entfernt sind. So bestand zum Zeitpunkt der Untersuchung generell der Wunsch nach (Klein-)Gruppen- und Sportangeboten. Zusätzlich äußerten jüngere Eltern den Wunsch nach spezifischen Erlebniswelten. Die vorliegende Untersuchung verdeutlicht erste Ansätze für eine bedürfnisorientierte Gestaltung von Freizeitangeboten für autistische Kinder und Jugendliche und für eine sinnvolle Erweiterung der Angebotslandschaft. Zusätzlich wird dringender Forschungsbedarf deutlich, um einer gleichberechtigten Teilhabe autistischer Kinder und Jugendlicher gerechter werden zu können.
... In contrast, another popular ASD assessment tool, ADOS, [27] has only been validated as a diagnostic tool. Various studies confirmed the validity and reliability of ATEC [28][29][30] and several trials confirmed ATEC's ability to longitudinally measure changes in participant performance [21,[31][32][33]. Whitehouse et al. used ATEC as a primary outcome measure for a randomized controlled trial of their iPad-based intervention for ASD named TOBY, and noted ATEC's "internal consistency and adequate predictive validity" [34]. ...
Prefrontal synthesis (PFS) is defined as the ability to juxtapose mental visuospatial objects at will. Paralysis of PFS may be responsible for the lack of comprehension of spatial prepositions, semantically-reversible sentences, and recursive sentences observed in 30 to 40% of individuals with autism spectrum disorder (ASD). In this report we present data from a three-year-long clinical trial of 6454 ASD children age 2 to 12 years, which were administered a PFS-targeting intervention. Tablet-based verbal and nonverbal exercises emphasizing mental-juxtaposition-of-objects were organized into an application called Mental Imagery Therapy for Autism (MITA). The test group included participants who completed more than one thousand exercises and made no more than one error per exercise. The control group was selected from the rest of participants by a matching procedure. Each test group participant was matched to the control group participant by age, gender, expressive language, receptive language, sociability, cognitive awareness, and health score at first evaluation using propensity score analysis. The test group showed a 2.2-fold improvement in receptive language score vs. control group (p < 0.0001) and a 1.4-fold improvement in expressive language (p = 0.0144). No statistically significant change was detected in other subscales not targeted by the exercises. These findings show that language acquisition improves after training PFS and that a further investigation of the PFS-targeting intervention in a randomized controlled study is warranted.
... Among the children who were at risk for developing autistic symptoms, approximately 42% no longer met criteria for an autism spectrum diagnosis after 2 years of therapy. The data presented seems to be more encouraging than data from previous studies that have reported lifetime prevalence rates of 80-90% for pediatric ASD cases (Charman, Howlin, Berry, & Prince, 2004;Woolfenden, Sarkozy, Ridley, & Williams, 2012). Nonetheless, results are in accordance with other studies that have reported estimates ranging from 3-25% of children who no longer met criteria for an ASD diagnosis (Helt et al., 2008;Sutera et al., 2007). ...
Autism spectrum disorder (ASD) is a neurodevelopmental disorder displaying individual impairments in social interaction, communication skills, interest and behaviours. In the last decade several studies have been published on the approaches that can be used with ASD children. This study illustrated the therapeutic approach of the DERBBI method, defined as a relational and body based intervention. The research described the symptoms and emotional development outcomes of ASD children aged 21–66 months, after 2 of the 4 years of planned therapy; the study group included both children who had received a diagnosis of autism and children (under 30 months) who had a risk of developing symptoms. Approximately 78% of the children with a more severe ASD symptomatology after two years of therapy maintained this diagnosis, instead, among children with a less severe ASD symptomatology, about the 67% after two years of therapy no longer fulfilled the ADOS-2 criteria for autism. Among the children who were at risk of developing the autistic symptomatology, about the 42% no longer showed this risk after 2 years of therapy. The improvements that the children showed in their ability to understand the intentions of others and to contact the emotions of others were also investigated. The findings of this study have underlined the importance of early positive indicators which, among the Autisms, could be defined a specific subpopulation that get better benefits from such a type of intervention.
... Where research evidence has examined the validity of parental reports, it has suggested that parents' reports correspond well to clinical diagnoses available 28 29 and that parental reports on children's developmental outcomes are accurate. 30 Although the sample size recruited at wave 1 is large (>1000 families), the sampling design (convenience sample recruited through social media and ID-related organisations) may have resulted in sampling bias, where families of children with ID in contact with charitable organisations and/or access to social media may be more likely to be included. However, although not fully representative of the UK, the findings discussed previously indicate that the 1000 Families sample includes elements of diversity that have the potential to provide insights into families with a child with ID from various backgrounds. ...
Purpose The 1000 Families Study is a large, UK-based, cohort of families of children with intellectual disability (ID). The main use of the cohort data will be to describe and explore correlates of the well-being of families of children with ID, including parents and siblings, using cross-sectional and (eventually) longitudinal analyses. The present cohort profile intends to describe the achieved cohort.
Participants Over 1000 families of UK children with ID aged between 4 and 15 years 11 months (total n=1184) have been recruited. The mean age of the cohort was 9.01 years old. The cohort includes more boys (61.8%) than girls (27.0%; missing 11.1%). Parents reported that 45.5% (n=539) of the children have autism. Most respondents were a female primary caregiver (84.9%), and 78.0% were the biological mother of the cohort child with ID. The largest ethnic group for primary caregivers was White British (78.5%), over half were married and living with their partner (53.3%) and 39.3% were educated to degree level.
Findings to date Data were collected on family, parental and child well-being, as well as demographic information. Wave 1 data collection took place between November 2015 and January 2017, primarily through online questionnaires. Telephone interviews were also completed by 644 primary caregivers.
Future plans Wave 2 data collection is ongoing and the research team will continue following up these families in subsequent waves, subject to funding availability. Results will be used to inform policy and practice on family and child well-being in families of children with ID. As this cohort profile aims to describe the cohort, future publications will explore relevant research questions and report key findings related to family well-being.
... However, parent surveys are a reliable source of information about the living environment of children, in particular children with special needs. There are a lot of studies that generate their data on children with ASD through parent surveys [1,[86][87][88][89][90][91]. Nonetheless, future studies would benefit from involving the children's perspective. ...
Screen based media have progressively become an integral part in the daily lives of children and youths with and without autism spectrum disorder (ASD). However, research that exclusively pursues the functionality of screen media use of children with ASD is extremely rare. Through a triangulated approach, the present study aims to fill this gap. We conducted 13 interviews with parents of children with ASD and supplemented this interview–study with an online survey including parents of children with ASD (n = 327). Children with ASD mostly used screen media (especially television) for their wellbeing, which is associated with chances and risks. Based on the parental interviews it is suggested that the media usage of children with ASD should be supervised. The results are discussed in terms of their practical implementation.
... Compared to typically developing children matched for linguistic abilities, children with WS exhibit less spontaneous functional play and imaginary play, although their abilities for symbolic play correlate with their expressive and receptive language, like in the typically developing population (Papaeliou et al., 2011). By contrast, children with ASD exhibit reduced ability to respond to joint attention (Mundy et al., 1994;Charman et al., 2004), with joint attention disabilities strongly correlating with language impairment (Bono et al., 2004;Bottema-Beutel, 2016), although symbolic and pretend play levels also correlate with language abilities (Hobson et al., 2013). ...
Language evolution resulted from changes in our biology, behavior, and culture. One source of these changes might be human self-domestication. Williams syndrome (WS) is a clinical condition with a clearly defined genetic basis which results in a distinctive behavioral and cognitive profile, including enhanced sociability. In this paper we show evidence that the WS phenotype can be satisfactorily construed as a hyper-domesticated human phenotype, plausibly resulting from the effect of the WS hemideletion on selected candidates for domestication and neural crest (NC) function. Specifically, we show that genes involved in animal domestication and NC development and function are significantly dysregulated in the blood of subjects with WS. We also discuss the consequences of this link between domestication and WS for our current understanding of language evolution.
... Thus, the three measures of adaptive behavior, ASD symptom severity, and maladaptive behavior can be assumed to share variance, as well as reflecting parents' more subjec- tive (and obviously non-blinded) impressions of their children's development and behavior than yielded by independent examiners. That said, parental ratings have the virtue of reflecting real-world competence [e.- g., Charman, Howlin, Berry, & Prince, 2003;Garon, Piccinin, & Smith, 2016]. Interview-based adaptive behavior assessment would have been preferable, if it had been fea- sible, and would have provided a more direct comparison with the literature. ...
Autism spectrum disorder (ASD) is associated with early differences in children's social interactions, communication, and play/interests. In many countries, considerable resources are invested in early intensive behavioral intervention (EIBI) programs for children with ASD, which aim to build adaptive skills and prevent or treat problem behavior. However, these programs vary widely in structure and delivery. Research evidence supports the efficacy of EIBI, but large knowledge gaps remain about the effectiveness of publicly funded EIBI programs. With policy‐makers as formal research partners, we compared children's progress over 1 year in public preschool programs in adjacent Canadian provinces, New Brunswick (NB) and Nova Scotia (NS). In NB, children received up to 20 hr/week of comprehensive EIBI in a publicly funded, privately provided program. In NS, children received up to 15 hr/week of Pivotal Response Treatment and Positive Behavior Support delivered through the publicly funded healthcare system. In this observational parallel cohort study, we collected parent‐reported data on 298 NB preschoolers (76.5% boys) and 221 NS preschoolers (86.9% boys) at EIBI start and 1 year later. Multilevel analysis revealed significant differences at baseline: NS children were older, with lower adaptive functioning and more severe ASD symptoms than NB children. Despite these pre‐treatment differences that favor NB, children in both provinces showed similar adaptive functioning gains and reductions of maladaptive behavior. No changes were seen in mean ASD symptom severity in either province over time. Results highlight the value of evaluating interventions in their implementation contexts, and have important implications for devising optimal ASD policy. Autism Research 2019. © 2019 International Society for Autism Research,Wiley Periodicals, Inc.
Lay Summary
We need to know more about the impact of different forms of early intensive behavioral intervention (EIBI) for young children with autism spectrum disorder (ASD). We showed that preschoolers with ASD gained important skills while in public EIBI programs in two Canadian provinces. We also saw that differences in how EIBI programs are structured and characteristics of children who are served may affect outcomes. For these reasons, policy making requires evidence that fits the local context.
... The fundamental question, then, is if and how children with ASD can be treated to develop their cognitive ability or overcome dysfunctional cognitive ability. While various interventions and educational programs are beneficial for children with ASD, there has been a lack of scientifically structured instructional programs to treat the cognitive dysfunction of children with ASD (Charman, Howlin, Berry, & Prince, 2004). Among the 108 therapies (Green, Pituch, Itchon, Choi, O'Reilly, & Sigafoos, 2006) currently being implemented for children with ASD, there are no psychological or educational programs aimed at treating the cognitive dysfunction of children with ASD in the Western countries. ...
Inclusion is a developmental process rather abrupt action of implementing a system. It is concerned with the type of modifications and adaptations required in the schools to accommodate all students with diverse educational needs. In inclusive schools, all children irrespective of their abilities learn together and enjoy the same rights and facilities within the same class. This is contrary to a segregated system of education where students with disabilities learn separately from their counterparts. It seems that inclusion appears at once an ideal to be reached and a potential means of minimizing discrimination in education. This study identifies teachers’ needs in ordinary schools and explores their perceptions about inclusive classes in Pakistan. Results of this study indicate that although most of the teachers are willing to teach inclusive classes with adequate training and resources, they have qualms and are not sure to what extent their teaching will be effective for all. In this regard they identify some of the barriers they might face in the school system. While discussing possibilities about inclusive classes some of them suggested a few strategies to orchestrate and harmonize the classes with students with diverse educational needs.
... Many children with autism spectrum disorder (ASD) demonstrate delayed vocabulary development [Charman et al., 2003;Charman, Howlin, Berry, & Prince, 2004;Ellis Weismer, Lord, & Esler, 2010;Luyster, Kadlec, Carter, & Tager-Flusberg, 2008;Paul, Chawarska, Cicchetti, & Volkmar, 2008], yet the word-learning mechanisms that support lexical acquisition appear to be largely intact [Haebig, Saffran, & Ellis Weismer, 2017;Mayo & Eigsti, 2012;Naigles, Kelty, Jaffery, & Fein, 2011;Swensen, Kelley, Fein, & Naigles, 2007]. This seemingly incongruent finding of delayed vocabulary development and intact word-learning mechanisms has led to the proposal that vocabulary delays in children with ASD are due not to impaired learning mechanisms per se, but to difficulty with intake of the input resulting from disruptions in supporting cognitive systems, such as attention [Arunachalam & Luyster, 2016;Tenenbaum, Amso, Righi, & Sheinkopf, 2017]. ...
In this commentary, we describe a novel theoretical perspective on vocabulary delays in children with autism spectrum disorder (ASD)—a perspective we refer to as auditory–visual misalignment. We synthesize empirical evidence that: (a) as a result of differences in both social and nonsocial visual attention, the auditory–visual statistics available to children with ASD for early word learning are misaligned; (b) this auditory–visual misalignment disrupts word learning and contributes to the vocabulary delays shown by children with ASD; and (c) adopting a perspective of auditory–visual misalignment has important theoretical and clinical implications for understanding and supporting vocabulary development in children with ASD. Theoretically, the auditory–visual misalignment perspective advances our understanding of how attentional differences impact vocabulary development in children with ASD in several ways. By adopting the point of view of the child, we provide a framework that brings together research on social and domain‐general visual attention differences in children with ASD. In addition, the auditory–visual misalignment perspective moves current thinking beyond how misalignment disrupts vocabulary development in the moment, and considers the likely consequences of misalignment over developmental time. Finally, considering auditory–visual misalignment may assist in identifying active ingredients of existing language interventions or in developing new interventions that deliver high quality, aligned input. Future research is needed to determine how manipulating auditory–visual alignment changes word learning in ASD and whether the effects of auditory–visual misalignment are unique to ASD or shared with other neurodevelopmental disorders or sources of language impairment. Autism Res 2018. © 2018 International Society for Autism Research, Wiley Periodicals, Inc.
Lay Summary
This article describes a new way of thinking about vocabulary delays in children with autism spectrum disorder (ASD). We suggest that children with ASD may have difficulty learning words because their attention is not tuned in to what is most important for learning, creating a mismatch between what they see and what they hear. This perspective brings together research on different types of attentional differences in people with ASD. It may also help us to understand how language interventions work.
... Thus, the current research has extended the uneven expressive language profiles from (mostly) English-speaking school children to a sizeable sample of Mandarin-exposed preschool children with ASD. Although parent-report assessments such as the CDI-toddler form were valid and efficient language assessments for capturing expressive language profiles in children with ASD, there may be concerns that some parents may over-report or under-report their child's language abilities (Charman et al. 2004;Jyotishi et al. 2017;Tager-Flusberg et al. 2009). Future research is needed to apply comprehensive techniques (e.g., natural language samples, experimental methods, and standardized measures), as multiple resources for illuminating the heterogeneity of language development in children with ASD learning different languages, and establishing more effective interventions in this clinical population across countries. ...
Data from children with ASD who are learning Indo-European languages indicate that (a) they vary hugely in their expressive language skills and (b) their pragmatic/socially-based language is more impaired than their structural language. We investigate whether similar patterns of language development exist for Mandarin-exposed children with ASD. Parent report data of the Putonghua Communicative Development Inventory—Toddler Form were collected from 160 17–83-month-old children with ASD. These children with ASD demonstrated similar levels of variability as Western children with ASD. In particular, they could be divided into three distinct subgroups (high verbal, middle verbal, low verbal), all of which manifested relative strengths in lexical and grammatical language compared to pragmatic usage of decontextualized language.
... A range of measures has been developed to measure and quantify autistic traits and related symptoms dimensionally across the general and clinical populations (Sucksmith et al. 2011) 2 . When used in children, most rely on caregiver reports, as this is a cost-effective way to gather information, and parents are generally reliable informants of their children's behaviors (Charman et al. 2004;Lee et al. 2010;Sikora et al. 2008). However, caregiver reports of autistic traits may also be influenced by other child, caregiver or environment differences (Norris and Lecavalier 2010). ...
Current research on children’s autistic traits in the general population relies predominantly on caregiver-report, yet the extent to which individual, caregiver or demographic characteristics are associated with informants’ ratings has not been sufficiently explored. In this study, caregivers of 396 Singaporean two-year-olds from a birth cohort study completed the Quantitative Checklist for Autism in Toddlers. Children’s gender, cognitive functioning and birth order, maternal age, and ethnic group membership were not significant predictors of caregiver-reported autistic traits. Poorer child language development and higher maternal depressive symptoms significantly predicted more social-communicative autistic traits, while lower maternal education predicted more behavioural autistic traits. Children’s language and informants’ educational level and depressive symptomatology may need to be considered in caregiver-reports of autistic traits.
... Such difficulties have been associated with limited insight, rigidity in thinking, rapport with the rater in clinician administered assessments, and/or inherent limited ability to reflect on internal states. In light of such difficulties, Charman, Howlin, Berry, and Prince (2004) advocate the use of parents as informants when assessing the developmental progress of children with ASD across therapeutic programmes. In addition, Johnson and Turner (2003) propose that to strengthen the validity of children's self-report findings, research must impose critical application of a range of triangulated methods including multiple informants, appropriate to the research question. ...
“FRIENDS for Life” is a cognitive behavioural therapy (CBT) programme which aims to reduce anxiety and promote resilience among children. This study evaluated the “FRIENDS for Life” (FRIENDS) programme used as an intervention for seven children between the ages of 10 and 11 presenting with high functioning autism spectrum disorder (HFA) who attend mainstream schooling. The study adopts a mixed methodology, explanatory research design, which included pre- and post-quantitative anxiety scales, parental interviews completed post-intervention, narrative observation of FRIENDS sessions and a post-intervention children’s evaluation questionnaire. Quantitative findings from this study suggest that participation in the “FRIENDS” programme does not reduce anxiety levels to promote resilience. Such results are discussed with regard to the utility of using standardised self-report measures among children with HFA. Despite this, qualitative information indicates that “FRIENDS” can be made accessible for children with HFA. Recommendations and implications for future research and FRIENDS implementations are outlined.
... The fundamental question, then, is if and how children with ASD can be treated to develop their cognitive ability or overcome dysfunctional cognitive ability. While various interventions and educational programs are beneficial for children with ASD, there has been a lack of scientifically structured instructional programs to treat the cognitive dysfunction of children with ASD (Charman, Howlin, Berry, & Prince, 2004). Among the 108 therapies (Green, Pituch, Itchon, Choi, O'Reilly, & Sigafoos, 2006) currently being implemented for children with ASD, there are no psychological or educational programs aimed at treating the cognitive dysfunction of children with ASD in the Western countries. ...
Inclusion is a developmental process rather abrupt action of implementing a system. It is concerned with the type of modifications and adaptations required in the schools to accommodate all students with diverse educational needs. In inclusive schools, all children irrespective of their abilities learn together and enjoy the same rights and facilities within the same class. This is contrary to a segregated system of education where students with disabilities learn separately from their counterparts. It seems that inclusion appears at once an ideal to be reached and a potential means of minimizing discrimination in education. This study identifies teachers’ needs in ordinary schools and explores their perceptions about inclusive classes in Pakistan. Results of this study indicate that although most of the teachers are willing to teach inclusive classes with adequate training and resources, they have qualms and are not sure to what extent their teaching will be effective for all. In this regard they identify some of the barriers they might face in the school system. While discussing possibilities about inclusive classes some of them suggested a few strategies to orchestrate and harmonize the classes with students with diverse educational needs.
... The primary outcome in the current trial, the ATEC, was developed specifically to measure incremental improvement in ASD symptoms, and there is evidence of good internal consistency, and adequate content and predictive validity (Magiati, Moss, Yatges, Charman, & Howlin, 2011). However, the ATEC has been criticised for incorporating items assessing both developmental ability and ASD symptom severity in each subscale, which makes it difficult to isolate and identify symptom-related change over time (Charman, Howlin, Berry, & Prince, 2004). Furthermore, in the current study, the ATEC was completed by parents, who were unblinded to their child's treatment group. ...
Background:
Technology-based interventions for Autism Spectrum Disorder (ASD) have proliferated, but few have been evaluated within the context of a randomised controlled trial (RCT). This RCT evaluated the efficacy of one technology-based early intervention programme (Therapy Outcomes By You; TOBY) in young children with ASD.
Methods:
TOBY is an app-based learning curriculum designed for children and parents as a complement to early behavioural intervention. Eighty children (16 female) were recruited to this RCT within 12 months of receiving a diagnosis of ASD (M age = 3.38; SD = 0.69) and randomised to receive either treatment-as-usual (community-based intervention, n = 39) or the TOBY therapy (at least 20 min/day) plus treatment-as-usual (n = 41) for a period of 6 months. Outcomes were assessed at 3 and 6 months postbaseline. (Australian New Zealand Clinical Trials Registry: ACTRN12614000738628; www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=365463).
Results:
Children in the TOBY intervention group averaged 19 min/day engaging with the app in the first 3 months, but only 2 min/day during the second 3 months. There was no group difference in scores on the primary outcome, the Autism Treatment Evaluation Checklist, at either the 3- or 6-month follow-up. However, significant improvements at the 6-month follow-up were observed in the TOBY intervention group relative to the treatment-as-usual group on three secondary outcomes: the Fine Motor and Visual Reception subscales of the Mullen Scale of Early Learning and the Total Words Understood scale of the MacArthur-Bates Communicative Development Index. Statistical trends towards improvement in the TOBY intervention group were observed on measures of adaptive function, although these decreased in magnitude from the 3- to 6-month follow-up.
Conclusions:
This study provides evidence that technology-based interventions may provide a relatively low-cost addition to existing therapist-delivered interventions for children with ASD. However, sustained use of the app over the full 6-month period was a challenge for most families.
... The current results support the conclusion that the SCQ is not an appropriate instrument to measure change in autistic behavior, as it showed the lowest effect size of all studied instruments. This is due to the character of the SCQ, which-similar to the ADOS-has been developed as screening instrument for ASD, but not as outcome measure of treatment studies [Berument, Rutter, Lord, Pickles, & Bailey, 1999;Charman, Howlin, Bryony, & Prince, 2004;Rutter, Bailey, & Lord, 2001]. ...
To date no reliable and objective, change sensitive instrument for autistic symptoms is available. The brief observation of social communication change (BOSCC) was specifically developed to measure change of core autistic symptoms, for example, for use as outcome measure in early intervention trials. This study investigated quality criteria of a preliminary research version of the BOSCC in N = 21 children with autism spectrum disorder (ASD) who had participated for 1 year in the Frankfurt early intervention program (FFIP). BOSCC rating was done on play based ADOS video scenes. Inter-rater agreement on the BOSCC average total was very high. The BOSCC showed a significant decrease of autistic symptoms after 1 year with a medium effect size. Symptom specific improvements were captured by the social communication subscale and most single items. The BOSCC showed comparable change sensitivity to other autism specific instruments. Future studies should focus on the finalized BOSCC version, and replicate findings in a larger sample. Autism Res 2015. © 2015 International Society for Autism Research, Wiley Periodicals, Inc.
... The evaluation scales allow measuring the behaviors from children with pervasive developmental disorders, in a way to establish a more reliable diagnose 20,21 . ...
Autism is one of the most common neurological disorders that affects the neurological development of children. Therapeutic interventions may intervene in communication disorders and stereotyped behaviors such as dancing, which as therapy can activate sensory pathways that enable gesture improvement. This study aimed to observe the effects of dance therapy in motor performance and gesture, body balance and gait, as well as in the quality of life of an adolescent with autistic disorder. It is a case study of a fifteen-year-old male who participated in 120 sessions of dance therapy, lasting 30 minutes, twice a week, on alternate days, over a period of one year. The assessment instruments used were the Motor Function Measure (MFM), Tinetti test and Childhood Autism Rating Scale (CARS). According to the MFM, the total score increased 27.08%; the Tinetti test regarding balance increased from 68 to 75%, and gait, from 16% to 66%. CARS changed from 41.5 to 34 points, changing the severe disorder to moderate within the proposed parameters. The dance therapy can optimize the psychomotor behavior of young people with autistic disorders.
The effect of sleep problems in 2- to 5-year-old autistic children was investigated in the largest and the longest observational study to-date. Parents assessed the development of 8540 children quarterly for three years on five orthogonal subscales: combinatorial receptive language, expressive language, sociability, sensory awareness, and health. 57% of caregivers reported no sleep problems, 31% reported mild sleep problems, 10% reported moderate sleep problems, and 2% reported severe sleep problems. In order to investigate the effect of sleep problems, children with moderate and severe sleep problems (N = 651) were matched to those with no sleep problems using a propensity score based on age, gender, expressive language, combinatorial receptive language, sociability, sensory awareness, and health at the 1st evaluation. There were 643 matched participants in each group. Children with no sleep problems developed faster compared to matched children with sleep problems in all subscales. The greatest difference in trajectories was detected in the health subscale. When controlling for the health score (in addition to each subscale score at baseline as well as gender and ASD severity), the effect of sleep problems decreased in all subscales except the combinatorial receptive language subscale (where the effect of sleep problems was increased), suggesting that sleep problems affect combinatorial language acquisition regardless of the overall health. This study confirms a high prevalence of sleep problems in autistic children and provides information on the effect of sleep problems on various aspects of children’s development.
Résumé L’examen de la littérature sur les TED amène à repérer un certain nombre de stabilités et de changements dans leurs évolutions, et ceci dans une perspective vie entière : relative stabilité du diagnostic et relative instabilité de la symptomatologie, diversité des transformations adaptatives et cognitives - un tableau complexe qui interroge aussi les aspects de recueil de données et de méthodologie. La question des facteurs de protection et/ou d’aggravation mérite également d’être abordée. Le nombre de candidats éligibles est faible et les données actuelles sont peu concluantes.
Imagination exercises administered by caregivers were investigated in a three-year-long observational trial of 3,540 children with autism aged 2-12 years. Tablet-based verbal and nonverbal exercises modeled on language therapy and emphasizing mental-juxtaposition-of-objects were organized into an application called Mental Imagery Therapy for Autism (MITA). MITA-exposed children were matched to the ‘Treatment-as-Usual’ participants (TaU, N=5,222) by age, gender, language, sociability, cognitive awareness, health, and ASD severity at baseline. Both younger (2-5 years-of-age) and older children (5-12 YOA) in MITA and TaU groups improved their symptoms over time, but younger MITA-exposed children showed 2.3-fold improvement in language score at the end of the trial vs. TaU group. There was no difference between MITA and TaU in the older children group, supporting Lenneberg’s critical period hypothesis.
Objectives:
The aim of this study was to evaluate parents' perception of the oral health-related quality of life (OHRQoL) of autistic children in Iran, and to determine the quality of life of their families in relation to child' oral health status.
Study design:
70 families with at least one child with autism, and 70 families with normal children were enrolled. Parents' perceptions of the OHRQoL of children were assessed using pre-validated PedsQL oral health scale questionnaire. PedsQL Family Impact Module questionnaire was also used to evaluate the impact of having an autistic child on the quality of life of their families. Both of the questionnaires were filled by parents. Parents of children with autism spectrum filled a separate questionnaire for the sibling of the autistic child. In the control families, child-reported PedsQL oral health scale questionnaire was also filled by the child himself/herself. Mann-Whitney U-test, and chi-square were used for statistical analysis.
Results:
There was a significant difference in the mean total score of PedsQL oral health scale questionnaire between autistics and controls. Parents of normal children reported more oral problems (p<0.001). There was not a significant difference in the mean total score of PedsQL Family Impact Module questionnaire between the families of autistics and controls in the last 7 and 30 days.
Conclusion:
According to parents' point of view, oral health-related quality of life of autistic children was better than normal children. However, parents of autistic children had more problems in the social and communication issues.
The effectiveness of several community-based early intervention programs for young
children (2.5–6.5 years old) with autism spectrum disorder in Greece were compared, as
they occurred in a community setting over a nine-month period. There were few differences
in functioning change between programs, but applied behavior analysis (ABA) was most
effective in improving intellectual functioning. Child age did not predict outcomes, although
children fared better with ABA if they had started at a younger age, and there was little
impact of this factor on the outcomes for the other programs. The slight advantage for ABA
programs may need to be weighed against the potential costs of the program.
One in 68 children has been identified with Autism Spectrum Disorder (ASD), a disorder defined by 1) deficits in social-communication and social interactions and 2) restricted, repetitive patterns of behavior, interests or activities. Research has shown that children with ASD who receive high-quality early intervention (EI) services in university-based research trials can make large gains in cognitive, communication, and adaptive behaviors skills, with positive long term effects. However, less is known about the outcomes for the over 50,000 children who receive EI in community settings. This dissertation provides initial evidence of the current state of community-based EI for children with ASD. Chapter 1 presents a meta-analysis of cognitive, communication, social, and adaptive behavior outcomes for children with ASD in community-based EI programs, and demonstrates that the gains made in the community are much smaller than those observed in university-based trials. In Chapter 2, prospective, longitudinal data collected from a local EI system is studied to understand which characteristics of preschool EI predict cognitive gains for 79 preschoolers with ASD that received publicly-funded services in classroom placements. The best predictor of gains was the utilization of recommended intervention practices to support the development of social and peer relationships. Chapter 3 discusses measurement of executive functioning (EF) among preschoolers with ASD, as executive functioning skills likely play an important role in response to EI. However existing EF measures have not been validated for use with low-functioning, nonverbal preschoolers with ASD. Results are presented from the development and the validation of a battery of nonverbal, performance-based EF tasks. These measures can be utilized in future community-based treatment trials.
AIM
To evaluate the characteristics that are associated with successful transition to school outcomes in preschool aged children with autism.
METHODS
Twenty-one participants transitioning from an early intervention program were assessed at two time points; at the end of their preschool placement and approximately 5 mo later following their transition to school. Child characteristics were assessed using the Mullen Scales of Early Learning, Vineland Adaptive Behaviour Scales, Social Communication Questionnaire and the Repetitive Behaviour Scale. Transition outcomes were assessed using Teacher Rating Scale of School Adjustment and the Social Skills Improvement System Rating Scales to provide an understanding of each child’s school adjustment. The relationship between child characteristics and school outcomes was evaluated.
RESULTS
Cognitive ability and adaptive behaviour were shown to be associated with successful transition to school outcomes including participation in the classroom and being comfortable with the classroom teacher. These factors were also associated with social skills in the classroom including assertiveness and engagement.
CONCLUSION
Supporting children on the spectrum in the domains of adaptive behaviour and cognitive ability, including language skills, is important for a successful transition to school. Providing the appropriate support within structured transition programs will assist children on the spectrum with this important transition, allowing them to maximise their learning and behavioural potential.
AIM
To identify factors that promote a positive start to school for children with autism spectrum disorder (ASD).
METHODS
Web of Science, MEDLINE, Scopus, and PsychINFO searches were conducted to identify literature published after 1991 and relevant to school transition processes in children with ASD. Twenty studies were deemed eligible for inclusion. These studies evaluated a range of factors including school readiness, parent and teacher perspectives on transition practices, characteristics of children with ASD that are associated with successful transition to school and the impact of school based intervention programs.
RESULTS
A review of these studies showed that children with ASD are less school ready emotionally than their peers and those children with ASD appear to have more externalising behaviours and self-regulation difficulties that affect their school engagement and their relationships with their teachers. There was a paucity of research looking at interventions targeting school readiness. However, school-based behavioural interventions appear to improve cognitive, language and daily living skills, but have less impact on socialisation and peer inclusion.
CONCLUSION
Children with ASD face more challenges transitioning to school, particularly with social interaction. Further development and implementation of specific school-based interventions is needed in order to assist children with autism to maximise their success in starting school.
Good interview and diagnostic measures for autism and other pervasive developmental disorders (PDDs) are available but there is a lack of a good screening questionnaire.
To develop and test a screening questionnaire based on items in the best available diagnostic interview--the Autism Diagnostic Interview--Revised (ADI-R).
A 40-item scale, the Autism Screening Questionnaire (ASQ), was developed and tested on a sample of 160 individuals with PDD and 40 with non-PDD diagnoses.
The ASQ has good discriminative validity with respect to the separation of PDD from non-PDD diagnoses at all IQ levels, with a cut-off of 15 proving most effective. The differentiation between autism and other varieties of PDD was weaker.
The ASQ is an effective screening questionnaire for PDD.
The predictive power of age and IQ at time of admission to an intensive treatment program using applied behavior analysis were examined in a 4- to 6-year follow-up of educational placement. Twenty-seven children with autistic disorder who were between the ages of 31 and 65 months and had IQs on the Stanford Binet between 35 and 109 at time of admission to the Douglass Developmental Disabilities Center were followed up 4 to 6 years after they left the preschool. The results showed that having a higher IQ at intake (M = 78) and being of younger age (M = 42 months) were both predictive of being in a regular education class after discharge, whereas having a lower IQ (M = 46) and being older at intake (M = 54 months) were closely related to placement in a special education classroom. The results are interpreted as pointing to the need for very early intervention for children with Autistic Disorder. It is also emphasized that older children and those with lower IQs in the present study showed measurable gains in IQ from treatment. The data should not be taken to suggest that children older than 4 years of age do not merit high quality treatment.
Parents of 20 preschool children with Autistic Disorder were interviewed with the Vineland Adaptive Behavior Scales, Interview Edition Survey Form, upon their child's admission to an intensive educational program, after one school year, and after two school years. Results showed that the Vineland was sensitive to changes in the children's adaptive functioning, and reflected differential changes in the four domains of Motor, Socialization, Daily Living and Communication skills. It is suggested that the Vineland, which is administered to parents and does not require the child's cooperation, is a useful instrument for school psychologists and other special services providers in assessing the child with autism's educational progress and programming needs.
The review discusses various interventions that have been
used in the treatment of children
with autism. It concludes that no single mode of treatment is ever
likely to be effective for all
children and all families. Instead, intervention will need to be adapted
to individual needs
and the value of approaches that involve a functional analysis of problems
is explored. It is
suggested that many so called “challenging” behaviours
result from the child's fundamental
difficulties in communication and social understanding, or from the ritualistic
and
obsessional tendencies that are also characteristic of autism. Possible
ways in which parents
and teachers might deal with problems in these areas are discussed. The
importance of early
diagnosis, and with it early, practical advice for families is stressed.
As part of a wider survey of parents of children with autistic spectrum disorders in the UK, the diagnostic experiences of 614 parents of children with autism and 156 with Asperger syndrome were compared. Although the ages of the children in the two groups were very similar at the time of the survey, parents of children given a diagnosis of Asperger syndrome had experienced significantly longer delays and greater frustration in obtaining a diagnosis than those with a child with autism. In the 'autism group' the average age when diagnosis was confirmed was around 5.5 years; in the 'Asperger group' it was 11 years. Parents of children with a diagnosis of autism were generally aware of problems in their child's development by 18 months of age; in the Asperger group concerns emerged later, at around 30 months of age. Initial worries in both groups centred around abnormal social development but parents of children with Asperger syndrome were less likely to have noted communication problems. Stereotyped or repetitive behaviours were not prominent in the early years in either group. Despite the problems inherent in data collected by postal survey, many of the findings of this study are supported by other research. The practical implications of delayed diagnosis, especially in the case of more able children with Asperger syndrome are discussed.
Vineland Adaptive Behavior Scales Special Population norms are presented for four groups of individuals with autism: (a) mute children under 10 years of age; (b) children with at least some verbal skills under 10 years of age; (c) mute individuals who are 10 years of age or older; and (d) individuals with at least some verbal skills who are 10 years of age or older. The sample included 684 autistic individuals ascertained from cases referred for the DSM-IV autism/PDD field trial collaborative study and five university sites with expertise in autism. Young children had higher standard scores than older individuals across all Vineland domains. In the Communication domain, younger verbal children were least impaired, older mute individuals most impaired, and younger mute and older verbal individuals in the midrange. Verbal individuals achieved higher scores in Daily Living Skills than mute individuals. The expected profile of a relative weakness in Socialization and relative strength in Daily Living Skills was obtained with age-equivalent but not standard scores. Results highlight the importance of employing Vineland special population norms as well as national norms when evaluating individuals with autism.
This study compared the treatment outcomes of nine autistic children who began receiving intensive behavioral intervention prior to 60 months of age with outcomes for nine other children who entered the same intervention program after 60 months of age. The 18 children in the sample included all of the children served by the Princeton Child Development Institute's day school and treatment program during the period 1975–83 who were diagnosed autistic and who had either (a) achieved positive discharge or (b) been enrolled in the program for 24 months or longer and continued to receive program services. Age at program entry was found to be strongly related to positive treatment outcome (i.e., to children's continued residence with their natural parents and attendance at public school classes). This investigation underlines the importance of early behavioral intervention for autistic children.
Although autism can occur in conjunction with a range of other conditions, the association with Down syndrome is generally considered to be relatively rare. Four young boys with Down syndrome are described who were also autistic. All children clearly fulfilled the diagnostic criteria for autism required by the ICD‐10 or DSM‐IM‐R, but in each case the parents had faced considerable difficulties in obtaining this diagnosis. Instead, the children's problems had been attributed to their cognitive delays, despite the fact that their behaviour and general progress differed from other children with Down syndrome in many important aspects. The implications, for both families and children, of the failure to diagnose autism when it co‐occurs with other conditions such as Down syndrome are discussed. Some speculations about possible pathological associations are also presented.
RÉSUMÉ
Diagnostic de l' autisme dans la trisomic 21: implications sur la prise en charge el hypotheses sur la palhologie
Bien que l'autisme puisse être associéà de nombreuses autres affections, l'association avec la trisomie 21 est habituellcme.ru considéréé comme rare. Quatre garçens irisomiques autistes sont décrits. Tous les enfants remplissaient clairement les crilères diagnostiques d'autisme de l'ICD‐10 ou du DSM‐III‐R, mais dans tous les cas. les parents avaient rencontré de multiples difficultés avant que le diagnostic ne soit porté. Fes problemés des enfants avaient été attribués à des retards cognitifs en dépit du fait que le comportement et l'évolution générale différaient sur des aspects trés importants des autres trisomiques. Fes conséquences, pour les enfants et les families, de la méconnaissance de l'autisme lorsqu'il survient en association avec une autre pathologic telle que la trisomie 21, sont discutées. Des hypothèses sur les associations pathologiques possibles sont également proposées.
ZUSAMMENFASSUNG
Die Diagnose Aulisinus hei Kindern mil Down Syndrom: Behandlungsmöglichkcilcn und einige Überlegungen zur Palhologie.
Obwuhl der Autismus in Verbindung mil einer Vtelzahl von Krankheitsbildern auftreten kann, wird er im Zusammenhang mit dem Down Syndrom relativ selien beschrieben. lis werden vier Jungen mil Down Syndrom und Autismus vorgestellt. Alle Kinder erfüllien die von der ICD‐10 oder DSM‐IIX‐R gefordcrten Kritcrien für Autismus, aber in jedem Fall hatten die FJtern große Schwierigkeiten, die Diagnose /.u erfahren. Stattdessen wurden die Probleme der Kinder ihrer kognitiven Entwicklungsverzögerung zugeschrieben, obwohl sich ihr Verhalten und Entwicklungsfortschritt in vielen wichtigen Punkten von dem anderer Kinder mit Down Syndrom unterschied. Es wird über die Folgen ftir die Familien sowie für die kinder diskutiert, wenn die Diagnose Autismus in Verbindung mit anderen Krankheitsbildem wie dem Down Syndrom nicht gestellt wird. lis werden einige Überlegungen zu möglichen pathologischen Zusammenhängen dargestellt.
RESUMEN
Reconocimiento del autismo en niños eon síndrome de Down: implicaciones para la intervención y algunu especulación acerca de la patologia
Aunque el autismo puedc ocurrir en conjunción con muchas otras circunslancias. su asociación con el síndrome de Down generalmente se considera relativamente rara. Se describen cuatro muchachos jóvenes con síndrome de Down que eran también autistas Todos los niños cumplían claramente los criterios diagnósticos para el autismo requeridos por el ICD‐10 o el DSM‐III‐R, pero en cada caso los padres tuvieron grandes dificultades para obtener este diagnóstico. En catnbio los problemas de los niños habían sido atribuidos a sus retrasos cognitivos, a pesar de que su comportamiento y su progreso general diferían de los de otros niños con síndrome de Down en muchos aspectos importantes. Se discuten las implicaciones, para las familias y los niños, del fallo en el diagnóstico de autismo cuando concurre con otras alteraciones como el síndrome de Down. También se presentan algunas especulaciones sobre posibles asociaciones patológicas.
Describes the Autism Diagnostic Interview-Revised (ADI-R), a revision of the Autism Diagnostic Interview, a semistructured, investigator-based interview for caregivers of children and adults for whom autism or pervasive developmental disorders is a possible diagnosis. The revised interview has been reorganized, shortened, modified to be appropriate for children with mental ages from about 18 months into adulthood and linked to ICD-10 and DSM-IV criteria. Psychometric data are presented for a sample of preschool children.
The review discusses various interventions that have been used in the treatment of children with autism. It concludes that no single mode of treatment is ever likely to be effective for all children and all families. Instead, intervention will need to be adapted to individual needs and the value of approaches that involve a functional analysis of problems is explored. It is suggested that many so called "challenging" behaviours result from the child's fundamental difficulties in communication and social understanding, or from the ritualistic and obsessional tendencies that are also characteristic of autism. Possible ways in which parents and teachers might deal with problems in these areas are discussed. The importance of early diagnosis, and with it early, practical advice for families is stressed.
The Vineland Adaptive Behavior Scales were used to investigate patterns of adaptive behavior in children with autism who were under 36 months of age. Subjects were 30 children with autism and 30 children with developmental delay matched on CA and MA. Relative to controls, the autistic group demonstrated weaker socialization and communication skills and greater discrepancies between adaptive behavior and MA. Different patterns of relations between adaptive behavior domains and cognitive and language skills were obtained for the two groups. Preliminary support for the utility of adaptive behavior profiles in identifying subgroups of children with autism is provided. Results are discussed in terms of their implications for early diagnosis of autism.
This study examined the effects of the child's diagnosis (autism vs. Down syndrome), age, and current educational placement on parental perceptions toward inclusion for their child with disabilities. Parents of children with autism and with Down syndrome completed surveys regarding their opinions on their child's current educational placement, their desire for changing the current placement, and their views on inclusive education. Results indicated that diagnosis, age, and current placement influenced parental opinion on the ideal educational placement for their child. Parents of children with Down syndrome were significantly more likely to endorse inclusion (full-time placement in general education) as the ideal educational program for their child whereas parents of children with autism were more likely to endorse mainstreaming (consistent part-time placement with general education students). Parents of younger children and parents whose children were already placed in general education programs were more positive towards inclusion than parents of older children or students currently in special education. Findings are discussed in terms of child characteristics and prevailing educational practices.
Around 4600 school-age children in Scotland fall within the spectrum of autistic disorders, of whom 780 have been identified in schools. This study sought the views of 23 specialist and 49 mainstream teachers, 22 with experience of autism, 27 without. They were questioned about the advantages and disadvantages of integration into mainstream for autistic children, their own ability to cope and predictors of success. Questionnaires were issued to special units and to mainstream primary and secondary schools. A minority of mainstream respondents believed children with autism should be integrated where possible. Mainstream teachers with experience of autism showed more confidence to deal with the children than those without experience. Many expressed concerns about effects on mainstream pupils but most were willing to undertake more training. Specialist teachers were more positive, although they acknowledged possible disadvantages for both groups of children and stressed that the success of integration depends on the individual child.
Progress has recently been made in the earlier identification of children with autism spectrum disorder (ASD). Whilst being welcome, this progress to earlier referral and diagnosis presents new challenges to clinical practice, including the accuracy and stability of early diagnosis, the utility of standardised assessment instruments with young pre-schoolers and the ability to indicate prognosis.
A selective review of recent research literature on the characteristic features of ASD in preschool children.
Multidisciplinary diagnostic assessment should include detailed information on developmental history, parents' descriptions of the everyday behaviour and activities of the child, direct assessment of the child's social interaction style, including where possible with age peers, and formal assessment of communicative, intellectual and adaptive function. Clinical assessments need to concentrate on the identification of impairments in early non-verbal social communication behaviours that characterise children with ASD from the second year of life, including social orienting, joint attention, imitation, play and reciprocal affective behaviour. The particular pattern of symptoms that presents in a 2-year-old with ASD may differ from that seen at the more prototypic age of 4 or 5 years. In particular, overt repetitive and stereotyped behaviours may be less notable, although where these are seen alongside the social and communicative impairments they are highly indicative of ASD. The use of standardised assessment instruments and the strict application of the DSM and ICD diagnostic criteria need to be employed with caution, as an expert clinical view has been shown to be more accurate. An important aspect of early diagnostic consultation is an open and straightforward approach to the negotiation of the diagnostic view with parents over time.
Earlier diagnosis and rising recognition of ASD have significant implications for primary healthcare and specialist diagnostic and therapeutic services.
We conducted a population-based study of eight successive California births cohorts to examine the degree to which improvements in detection and changes in diagnosis contribute to the observed increase in autism prevalence. Children born in 1987-1994 who had autism were identified from the statewide agency responsible for coordinating services for individuals with developmental disabilities. To evaluate the role of diagnostic substitution, trends in prevalence of mental retardation without autism were also investigated. A total of 5038 children with full syndrome autism were identified from 4,590,333 California births, a prevalence of 11.0 per 10,000. During the study period, prevalence increased from 5.8 to 14.9 per 10,000, for an absolute change of 9.1 per 10,000. The pattern of increase was not influenced by maternal age, race/ethnicity, education, child gender, or plurality. During the same period, the prevalence of mental retardation without autism decreased from 28.8 to 19.5 per 10,000, for an absolute change of 9.3 per 10,000. These data suggest that improvements in detection and changes in diagnosis account for the observed increase in autism; whether there has also been a true increase in incidence is not known.
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The Changing Prevalence of Autism in California
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