The autism inpatient collection: methods and preliminary sample description

Abstract

BackgroundIndividuals severely affected by autism spectrum disorder (ASD), including those with intellectual disability, expressive language impairment, and/or self-injurious behavior (SIB), are underrepresented in the ASD literature and extant collections of phenotypic and biological data. An understanding of ASD’s etiology and subtypes can only be as complete as the studied samples are representative.MethodsThe Autism Inpatient Collection (AIC) is a multi-site study enrolling children and adolescents with ASD aged 4–20 years admitted to six specialized inpatient psychiatry units. Enrollment began March, 2014, and continues at a rate of over 400 children annually. Measures characterizing adaptive and cognitive functioning, communication, externalizing behaviors, emotion regulation, psychiatric co-morbidity, self-injurious behavior, parent stress, and parent self-efficacy are collected. ASD diagnosis is confirmed by the Autism Diagnostic Observation Schedule – 2 (ADOS-2) and extensive inpatient observation. Biological samples from probands and their biological parents are banked and processed for DNA extraction and creation of lymphoblastoid cell lines.ResultsSixty-one percent of eligible subjects were enrolled. The first 147 subjects were an average of 12.6 years old (SD 3.42, range 4–20); 26.5 % female; 74.8 % Caucasian, and 81.6 % non-Hispanic/non-Latino. Mean non-verbal intelligence quotient IQ = 70.9 (SD 29.16, range 30–137) and mean adaptive behavior composite score = 55.6 (SD 12.9, range 27–96). A majority of subjects (52.4 %) were non- or minimally verbal. The average Aberrant Behavior Checklist - Irritability Subscale score was 28.6, well above the typical threshold for clinically concerning externalizing behaviors, and 26.5 % of the sample engaged in SIB. Females had more frequent and severe SIB than males.ConclusionsPreliminary data indicate that the AIC has a rich representation of the portion of the autism spectrum that is understudied and underrepresented in extant data collections. More than half of the sample is non- or minimally verbal, over 40 % have intellectual disability, and over one quarter exhibit SIB. The AIC is a substantial new resource for study of the full autism spectrum, which will augment existing data on higher-functioning cohorts and facilitate the identification of genetic subtypes and novel treatment targets. The AIC investigators welcome collaborations with other investigators, and access to the AIC phenotypic data and biosamples may be requested through the Simons Foundation (www.sfari.org).

The emotion dysregulation inventory: Psychometric properties and item response theory calibration in an autism spectrum disorder sample

“…The full methods of the AIC have been published (Siegel et al, 2015). The AIC included patients between the ages of 4–20 years old, though very few were younger than 6 (n = 9).…”

Gender Differences in Emotion Dysregulation in an Autism Inpatient Psychiatric Sample

“…Better understanding of ER among individuals with ASD who require the most intensive services for ER-related problems has the potential to inform treatments. Other advantage of the inpatient population is the wide variability in cognitive, language, and functioning levels [Siegel et al, 2015], which provides a unique opportunity to evaluate if these factors moderate the association between ER and gender.…”

Predicting aggression to others in youth with autism using a wearable biosensor

“…The AIC is an ongoing six‐site study of over 1,200 children, adolescents, and young adults admitted to specialized inpatient psychiatric units for persons with ASD and other developmental disorders. The full methods of the AIC study have been published previously [Siegel et al, ]. Briefly, patients 4–20 years old with a score of ≥12 on the Social Communication Questionnaire [Rutter, Bailey, & Lord, ] or high suspicion of ASD from the inpatient clinical treatment team were eligible for enrollment.…”