Explore the vast range of titles available.

Reports of rising prevalence of autism spectrum disorders (ASD), along with their profound personal and societal burden, emphasize the need of methodologically sound studies to explore their causes and consequences. We here present the design of a large intergenerational resource for ASD research, along with population-based prevalence estimates of ASD and their diagnostic validity. The Stockholm Youth Cohort is a record-linkage study comprising all individuals aged 0-17 years, ever resident in Stockholm County in 2001-2007 (N = 589,114). ASD cases (N = 5,100) were identified using a multisource approach, involving registers covering all pathways to ASD diagnosis and care, and categorized according to co-morbid intellectual disability. Prospectively recorded information on potential determinants and consequences of ASD were retrieved from national and regional health and administrative registers. Case ascertainment was validated through case-note review, and cross validation with co-existing cases in a national twin study. The 2007 year prevalence of ASD in all children and young people was 11.5 per 1,000 (95% confidence interval 11.2-11.8), with a co-morbid intellectual disability recorded in 42.6% (41.0-44.2) of cases. We found 96.0% (92.0-98.4) of reviewed case-notes being consistent with a diagnosis of ASD, and confirmed ASD in 85.2% (66.2-95.8) of affected twins. Findings from this contemporary study accords with recently reported prevalence estimates from Western countries at around 1%, based on valid case ascertainment. The Stockholm Youth Cohort, in light of the availability of extensive information from Sweden's registers, constitutes an important resource for ASD research. On-going work, including collection of biological samples, will enrich the study further.

Psychoeducation is a recommended first-line intervention for transition-aged autistic youth, but it has not been previously evaluated in an internet-delivered format. SCOPE (Spectrum Computerized Psychoeducation) is an 8-week individual, internet-delivered, therapist-supported psychoeducative intervention. This study aimed to investigate the effectiveness of SCOPE through a 3-armed randomized controlled trial. The intervention aims to increase participants' understanding of autism and, in doing so, increase their quality of life (QoL). SCOPE was codeveloped with clinicians and autistic young adults. It contains 8 autism-related modules, each with (1) text describing the module topic, (2) four video vignettes with recurring characters who describe their lives and perspectives on the module topic, (3) a list of neurotypical characteristics related to the module's topic, and (4) self-reflection using 3 or 4 questions about the module topic, answered by multiple-choice bullets and voluntary open-ended written comments. Participants were randomized (2:1:1) to SCOPE, an active control (web-based self-study), or treatment as usual (TAU). The primary outcome was participants' autism knowledge, assessed using the Autism Spectrum Disorder Quiz, and secondary outcomes included acceptance of diagnosis, QoL, and symptoms of mental health problems. All outcomes were assessed at the baseline, postintervention, and 3-month follow-up time points, using mixed-effects models to assess change in outcome measures across time points. Between 2014 and 2020, a total of 141 participants were randomized to 1 of the 3 treatment arms. The SCOPE participants had significantly greater autism knowledge gains at the posttreatment time point compared to TAU participants with a moderate effect size (d=0.47; P=.05); gains were maintained at the 3-month follow-up (d=0.46; P=.05). The self-study participants also had increased knowledge gains compared to TAU participants at the posttreatment time point with a moderate effect size (d=0.60; P=.03) but did not maintain these gains at the 3-month follow-up, and their autism knowledge scores returned to baseline (mean change score: -0.13, 95% CI -1.20 to 0.94; P=.81). In addition, SCOPE participants reported improved QoL at the postintervention (d=0.37, P=.02) and 3-month follow-up time points (d=0.60; P=.001), compared to the combined controls. The gained autism knowledge was not mirrored by changes in symptoms of anxiety or depression. Effective internet-delivered interventions may facilitate first-line service access to individuals who are unable or unwilling to use traditional health care interventions or who live in geographically remote locations. Additionally, an intervention such as SCOPE could impart and sustain the knowledge gained through psychoeducation in transition-aged autistic youth. For future research, qualitative studies could further our understanding of the lived experiences of intervention participation and outcomes after internet-delivered psychoeducation. ClinicalTrials.gov NCT03665363; https://clinicaltrials.gov/study/NCT03665363.

[This corrects the article DOI: 10.2196/49305.].

The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s (WHO) standard for assessing individual functioning. Over the last decade, the ICF has been made more accessible for autism and ADHD through the development and validation of tailored shorter ICF versions for these diagnoses, ICF Core Sets. To further enhance their applicability in research and practice, these Core Sets have been operationalized and implemented on an online platform, the ICF CoreSets platform. Here, we describe the iterative development process of the CoreSets platform. This multiple-methods study examines user feedback on the operationalization of the Core Sets and the feasibility of the CoreSets platform as a functional assessment for autism and ADHD. We collected a total of 678 assessments from the CoreSets platform. Individuals diagnosed with autism and/or ADHD, their relatives, participants from the general population, and professionals completed and provided feedback on the usability of the CoreSets platform. Qualitative feedback via interviews and focus groups were also collected. Qualitative data were analysed via content analysis, while quantitative data were examined using univariate and descriptive techniques. Findings show that the ICF CoreSets platform is feasible and user-friendly, but areas for improvement were also indicated, leading to additional refinement of the operationalization and platform. The operationalization of the ICF Core Sets and their implementation in the CoreSets platform appears adequate for use in research and practice, particularly after revisions indicated by future users, and is now ready for psychometric standardization.

The possible effect of the DSM-5 impairment criterion on diagnosing autism spectrum disorder (ASD) in young children was examined in 127 children aged 20–47 months with a DSM-IV-TR clinical consensus diagnosis of ASD. The composite score of the Vineland Adaptive Behavior Scales (VABS) served as a proxy for the DSM-5 impairment criterion. When applying a mild level of impairment (cutoff: 1 SD below the mean on the VABS), 88 % of the cases fulfilled the impairment criterion. Sixty-nine percent fulfilled the impairment criterion at a moderate level (1.5 SDs) and 33 % at a severe level (2 SDs). Findings indicate that a strict application of the new DSM-5 impairment criterion might compromise early diagnosis of ASD.

The Autism Diagnostic Observation Schedule (ADOS) is a first-choice diagnostic tool in autism spectrum disorder (ASD). Excellent interpersonal objectivity (interrater reliability) has been demonstrated for the ADOS under optimal conditions, i.e., within groups of highly trained “research reliable” examiners in research setting. We investigated the spontaneous interrater reliability among clinically trained ADOS users across multiple sites in clinical routine. Forty videotaped administrations of the ADOS modules 1–4 were rated by five different raters each from a pool of in total 15 raters affiliated to 13 different clinical sites. G ( q , k ) coefficients (analogous to intraclass correlations), kappas ( ĸ ) and percent agreement (PA) were calculated. The median interrater reliability for items across the four modules was G ( q , k ) = .74–.83, with the single ADOS items ranging from .23 to .94. G ( q , k ) for total scores was .85–.92. For diagnostic classification (ASD/non-spectrum), PA was 64–82 % and Fleiss’ ĸ .19–.55. Objectivity was lower for pervasive developmental disorder not otherwise specified and non-spectrum diagnoses as compared to autism. Interrater reliabilities of the ADOS items and domain totals among clinical users across multiple sites were in the same range as previously reported for research reliable users, while the one for diagnostic classification was lower. Differences in sample characteristics, rater skills and statistics compared with previous studies are discussed. Findings endorse the objectivity of the ADOS in naturalistic clinical settings, but also pinpoint its limitations and the need and value of adequate and continuous rater training.

Atypical gaze processing has been reported in children with autism spectrum disorders (ASD). Here we explored how infants at risk for ASD respond behaviorally to others’ direct gaze. We assessed 10-month-olds with a sibling with ASD (high risk group; n = 61) and a control group (n = 18) during interaction with an adult. Eye-tracking revealed less looking at the adult in the high risk group during 300–1000 ms after the adult initiated direct gaze: a short alteration that is likely to go unnoticed by the naked eye. Data aggregated over longer segments (the traditional eye-tracking approach) showed no group differences. Although findings are limited by lack of outcome data, they are in line with theories linking atypical eye processing to the emergence of ASD.

The current study aimed to investigate the Autism Diagnostic Interview-Revised (ADI-R) algorithms for toddlers and young preschoolers (Kim and Lord, J Autism Dev Disord 42(1):82–93, 2012 ) in a non-US sample from ten sites in nine countries (n = 1,104). The construct validity indicated a good fit of the algorithms. The diagnostic validity was lower, with satisfactorily high specificities but moderate sensitivities. Young children with clinical ASD and lower language ability were largely in the mild-to-moderate or moderate-to-severe concern ranges of the ADI-R, nearly half of the older and phrase speech ASD-group fell into the little-to-no concern range. Although broadly the findings support the toddler algorithms, further work is required to understand why they might have different properties in different samples to further inform research and clinical use.

The overall aim of this thesis was to study some previously under-researched psychometric properties of the standardized diagnostic instruments Autism Diagnostic Interview-Revised [ADI-R] and Autism Diagnostic Observation Schedule [ADOS] as well as the standardized Vineland Adaptive Behavior Scales, Second Edition [VABS-II] in order to improve current diagnostic practice.Excellent interpersonal objectivity operationalized as interrater reliability of the ADI-R and the ADOS has been reported from research settings with highly trained, research reliable examiners. However, there are no studies from clinical practice despite the wide usage of both instruments in these settings. In studies I and II, the objectivity of the ADI-R and the ADOS was examined in clinical practice among clinical users. For the ADI-R, the objectivity for items (medians), domains and criteria exceeded G(q,k) (analogous to intraclass correlation) = .90 in all instances and was ĸ = .83 for classification. For modules 1-4 of the ADOS, items (medians) ranged from G(q,k) = .74 to .83, overall totals from .85 to .92 and classification was ĸ = .69.Diagnostic validity of the ADI-R’s and the ADOS’ revised algorithms, separately and in combination, has previously only occasionally been reported for young children. In study III, the diagnostic validity of these instruments was examined in a large clinical sample of toddlers and young preschoolers. Diagnostic validity for the combined ADI-R and the ADOS yielded a sensitivity of 78% and specificity of 88% while the classification accuracy for the single use of the ADI-R and the ADOS in general was lower.Finally, despite a multitude of studies reporting on the effect of the new DSM-5 symptomatology criteria of ASD on diagnosis rates, no studies have analyzed the effect of the novel DSM-5 impairment criterion. In study IV, this was examined in a subsample of the young children of study III. In accordance with the DSM-5 conceptualization of impairment, this was measured with the standardized VABS-II and different cutoffs of adaptive functioning were applied to operationalize impairment. We showed that, depending on the threshold (1, 1 1⁄2 and 2 SDs below the mean) used to operationalize impairment, 88%, 69% and 33% respectively of the children with a DSM-IV-TR ASD diagnosis fulfilled the impairment criterion compared to 91% for the DSM-5 symptomatology criteria.To conclude, in terms of objectivity our results endorse the universal use of the ADI-R and the ADOS in everyday clinical practice and research for all age groups as the first choice diagnostic instruments for ASD. The combined use of the ADI-R and the ADOS yields better diagnostic validity than the separate usage of either instrument. Moreover, our results suggest that a strict application of the new DSM-5 impairment criterion might compromise early diagnosis for 12-67% of young children with a complete DSM-5 ASD symptomatology. The main asset of using standardized instruments is improved objectivity in assessing ASD symptomatology.