Health Status and Medical Co-Morbidities of Non-Verbal/Low-Verbal Children with ASD: Data From the Autism Treatment Network

HEALTH STATUS AND MEDICAL CO-MORBIDITIES OF NON-VERBAL/LOW-VERBAL CHILDREN WITH ASD: DATA FROM THE AUTISM TREATMENT NETWORK

Background:

Current research estimates that 9-25% of children with ASD remain non-verbal into early childhood (Thurm et al. 2007; Hus et al., 2007), yet little research has focused on this subset of children. This represents a gap in addressing the needs of children with ASD particularly as language outcomes are a strong predictor of overall outcome (Kobayashi, Murata, & Yoshinaga, 1992). One frequently cited barrier to good medical care for children with ASD is difficulty communicating symptoms appropriately (Kraus et al. 2003; Filipek et al. 1999). Notwithstanding, little research characterizes the healthcare needs of non-verbal/low-verbal children with ASD.

Objectives:

The objective of this study is to characterize the behavioral and medical issues of non-verbal/low-verbal children with ASD as compared to those of verbal children.

Methods:

The study compares non-verbal/low-verbal and verbal children with an autism spectrum diagnosis (autism, Asperger disorder or PDD-NOS) ages 2-17 who are enrolled in the Autism Treatment Network (ATN) Registry.  The ATN has enrolled 3073 children at 14 sites across the US and Canada.  Children will be assigned to non-verbal/low-verbal or verbal groups based on age and performance on the ADOS: 1) Non-verbal/low-verbal: no words or some words on Module 1 or five years and above on Module 2; 2) Verbal: Module 3 or 4. The study will compare rates of neurological, physical, and genetic abnormalities, medication use, rates of reported GI and sleep disorders (Child Sleep Habits Questionnaire), problem behaviors (Child Behavior Checklist), adaptive functioning (Vineland Adaptive Behavior Scales, Second Edition), Pediatric Quality of Life (Peds QL), and sensory issues (Short Sensory Profile) for both groups.

Results:

Preliminary data from 2460 children in the ATN Registry showed that parental report of problems with language use and understanding were related to exposure to special diets (p=.0001). Children with parent-reported language regression were also more likely to be exposed to special diets (p=.0001) and complementary and alternative medicine (p=.0053). These children (n=2508) also have significantly higher repetitive movement problems (p=0.0002), abnormalities in stance and gait (p=.0001), and muscle tone abnormalities (p=.0001). Low cognitive ability (IQ < 70) was linked to a higher incidence of repetitive movements (p=0.0001) and stance and gait abnormalities (p=0.0001). A descriptive analysis of medical and behavioral characteristics of non-verbal/low-verbal children compared to verbal children will be presented.

Conclusions:

Factors related to language performance are associated with physical health concerns.  This study will provide a description of the behavioral and medical characteristics of non-verbal/low-verbal children with ASD addressing previously unanswered questions regarding their medical issues, behavioral concerns, overall quality of life, and adaptive functioning relative to children with ASD who are verbal.

Acknowledgement

The authors acknowledge the ATN, a program of Autism Speaks, for use of the data. Additional support comes from a cooperative agreement (UA3 MC 11054) with the Health Resources and Services Administration, Maternal and Child Health Research Program.