Measuring the involvement in family life of children with autism spectrum disorder: A DBPNet study

Background: Children with Autism Spectrum Disorder (ASD) have social and communication deficits that impair their involvement in family life. No measures of child involvement in the family have been validated for the ASD population. Aim: To evaluate the validity of a measure of Family Involvement (FI) of children ages 5–12 with ASD. Method: Parents of children ages 5–12 with ASD (n = 114) completed FI items from the PROMIS® pediatric Family Relationships item bank in computerized adaptive testing (CAT) format, as well as measures of ASD symptom burden, parenting stress, and parental depression. Medical record review provided child intelligence or developmental quotient. A reference sample (n = 236) closely matching the ASD sample in age and gender was created from the national standardization sample, and underwent a simulated CAT. Results: The CAT precisely and efficiently measured parent-reported FI of children with ASD. Average FI scores were lower among children with ASD (M = 46.3, SD = 7.1) than children in the reference sample (M = 52.5, SD = 9.1). A “dose response” decrease in FI was observed as ASD severity increased. Increased parenting stress was associated with lower FI. No relationship between FI and child IQ was found. Conclusion: The FI items captured FI among children ages 5–12 with ASD with acceptable precision. Reduced FI among children with ASD, particularly those with higher symptom severity, suggests validity of the items in this population.