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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
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The autism inpatient collection: methods and preliminary sample description.

Matthew Siegel1, Kahsi A Smith2, Carla Mazefsky3

  • 1Maine Medical Center Research Institute, Spring Harbor Hospital, Tufts University School of Medicine, 123 Andover Road, Westbrook, ME 04092 USA.

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Summary

The Autism Inpatient Collection (AIC) is a new study collecting data on children with severe autism spectrum disorder (ASD), including those with intellectual disability and self-injurious behavior (SIB). This resource aims to represent understudied ASD populations for better understanding of its causes and subtypes.

Keywords:
Autism spectrum disorderGeneticsInpatientIntellectual disabilityNew data resourceNon-verbalPsychiatricSelf-injurySevere autism

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Area of Science:

  • Neuroscience
  • Genetics
  • Developmental Psychology

Background:

  • Individuals with severe autism spectrum disorder (ASD), including those with intellectual disability and self-injurious behavior (SIB), are underrepresented in current research.
  • Existing data collections lack comprehensive phenotypic and biological information on these understudied ASD populations.
  • Representative samples are crucial for a complete understanding of ASD etiology and subtypes.

Purpose of the Study:

  • To establish the Autism Inpatient Collection (AIC), a multi-site study enrolling children and adolescents with ASD.
  • To characterize individuals with ASD, particularly those with intellectual disability, expressive language impairment, and SIB.
  • To create a valuable resource for studying the full spectrum of ASD and identifying novel treatment targets.

Main Methods:

  • The AIC enrolled children and adolescents aged 4-20 years with ASD in specialized inpatient psychiatry units.
  • Data collected include adaptive functioning, cognitive abilities, communication, behaviors, psychiatric comorbidities, and SIB.
  • ASD diagnosis was confirmed using the Autism Diagnostic Observation Schedule-2 (ADOS-2) and clinical observation; biological samples were banked for genetic analysis.

Main Results:

  • The AIC enrolled 61% of eligible subjects, with the first 147 subjects averaging 12.6 years old.
  • A majority (52.4%) were non- or minimally verbal, over 40% had intellectual disability, and 26.5% exhibited SIB.
  • Females showed more frequent and severe SIB than males; Aberrant Behavior Checklist scores indicated clinically concerning externalizing behaviors.

Conclusions:

  • The AIC successfully represents understudied, severely affected individuals within the autism spectrum.
  • This collection serves as a substantial new resource to augment existing data on higher-functioning cohorts.
  • The AIC data and biosamples will facilitate the identification of genetic subtypes and novel treatment targets for ASD.