16978
Non-Verbal Children with ASD (NV-ASD): Validating a Registry and Characterizing a Population
This study completes a series of verification/validation studies for a US-based, online, parent-report-based ASD registry with > 46,000 consented participants. Child probands are required to have a professional diagnosis of ASD. Previous studies have verified parent report of professional ASD diagnosis via medical record review (Daniels et al., 2012) and validated the Positive Predictive Value (PPV) of ASD diagnosis among verbal children in the registry (Lee et al., 2010). The current study is comparable to Lee et al., but limited to NV-ASD children. This study provides a unique opportunity to characterize this oft overlooked ASD subpopulation. NV-ASD presents unique challenges and opportunities for ASD research. In addition to language deficits, many additional ASD-like traits are observed at lower IQ levels in other, non-ASD, developmental disorders. This makes it difficult to accurately diagnose ASD in individuals at the lower end of the IQ scale. Thus, clinical diagnosis depends even more heavily on the clinician’s best estimate in conjunction with traditional ASD assessments.
Objectives:
- To determine the PPV of an online parent report-based registry for NV-ASD child participants.
- To characterize NV-ASD in this population.
Methods:
Eligibility: Enrolled in the registry; current ASD diagnosis; confirmatory score >= 12 on the SCQ-Lifetime to account for variability in the quality of community-based professional diagnoses of ASD; non-verbal per Q1 in the SCQ-Lifetime: “Is she/he now able to talk using short phrases or sentences?”; >= 6 years, an age when verbal/non-verbal status is generally established; aged <18 years.
Procedures: Eligible participants were invited to receive an in-person clinical assessment at labs in Maryland, Missouri, or Michigan, or at their home in the northern-New Jersey/New York region. The clinical assessment included the ADOS, ADI-R, and one or more IQ-related tests. Parents were asked complete a battery of online questionnaires: SRS, ABAS-II, RBS-R, ABC, and the registry’s proprietary basic history questionnaire. The additional questionnaires were required to help characterized the population and help to differentiate ASD in the event that the SCQ-Lifetime did not suffice. Parents were also asked to request that a teacher complete an SRS for their child. Parents were asked to produce evidence that their child had, indeed, received a community diagnosis of ASD.
Results:
63 children were consented and 56 participants (43 male; 77%) completed the study. 100% of participants (CI95% = [95%, 100%]) were deemed by the study’s expert research clinicians to have an ASD. All participants met the criteria for ASD on both the ADOS and the ADI-R. All participants had cognitive disabilities beyond non-verbal status.
Conclusions:
ASD research requires increasingly large samples to uncover the causes of this etiologically heterogeneous neurodevelopmental syndrome. These results suggest that scientists can both use registry data and recruit research participants from the registry with confidence.
The relationship between degree of general cognitive impairment and the expectable severity of sub-sets of autistic symptoms (i.e., social communication and restricted/repetitive behaviors) among all non-verbal individuals warrants further study, and is being examined in this unique group of NV subjects who meet diagnostic criteria for ASD.