Design and Cohort Characteristics of the Social Spectrum Study: A Multicenter Study of the Autism Spectrum Among Clinically Referred Children

Abstract

This paper provides an overview of the design and cohort characteristics of the Social Spectrum Study: a clinical cohort study that used a two-phase sampling design to identify children at risk for ASD. After screening 1281 children aged 2.5–10 years who had been consecutively referred to one of six mental health services in the Netherlands, children who screened positive for ASD (n = 428) and a random selection of screen negatives (n = 240) were invited to participate in diagnostic assessments and questionnaires regarding the child, family and society. A 1-year follow-up was also conducted. Results from this study may contribute to knowledge of the identification and characterization of children with ASD, family processes, and the impact of ASD on the family and society.

Examining bidirectional effects between the autism spectrum disorder (ASD) core symptom domains and anxiety in children with ASD

“…The child's gender, reason for referral, educational level of the mother, urbanicity, parental age, ASD symptom severity, anxiety symptom severity, and Full‐Scale IQ were all not related to attrition at T2. These findings are similar to attrition in the broader sample (Duvekot et al., ).…”

Children with an Autism Spectrum Disorder and Their Caregivers: Capturing Health-Related and Care-Related Quality of Life

“…This study also had some noteworthy limitations. First, this Dutch multicenter study included a well-defined and relevant sample (Duvekot et al 2017) but was relatively small compared to most US studies (Hoefman et al 2014b;Kuhlthau et al 2014). Our participants may not be fully representative of the total group of children with ASD and their caregivers, because relatively many children lived with both biological parents, were somewhat younger, and appeared to be slightly less impaired intellectually and with regard to autism traits (Table 1), compared to those in other study samples.…”

“…We collected data as part of the "Social Spectrum Study", a prospective, multicenter study of relations between autistic traits and individual, familial, and care characteristics of clinically referred children and their families (Duvekot et al 2017). All children aged 2-10 years referred to one of six child and adolescent mental health services (CAMHS) in the South-West of the Netherlands were screened for ASD with the parent-reported Social Responsiveness Scale (SRS; Constantino and Gruber 2012).…”

“…Children with a high risk of ASD were selected by using a total raw score of 75 or more on the SRS as the cut-off value, thus differentiating between high risk of ASD versus other psychiatric problems with a sensitivity of 0.85 and a specificity of 0.75 (Constantino and Gruber 2005). Besides all children with a positive screening result based on the SRS (total raw score ≥ 75; n = 428), a random selection of children with a negative screening result based on the SRS (total raw score < 75; n = 240), were invited with their caregivers for an in-depth assessment (total n = 668), using an oversampling design (Dunn et al 1999;Duvekot et al 2017). We measured autistic traits in the children with the Autism Diagnostic Observation Schedule, second edition (ADOS-2, Lord et al 2012;De Bildt et al 2013).…”

Family Coordination in Families who have a Child with Autism Spectrum Disorder

“…Indeed, there have been several studies that have looked at parent-child interactions, including free-play scenarios (Duvekot et al 2017) as well as the Strange Situation (Ainsworth et al 1978), a procedure for assessing the child's attachment (Rutgers et al 2004;Oppenheim et al 2009). These studies, however, have been done in the context of dyads (mother-child; father-child), typically the primary caregiver and the child with ASD.…”