Parent-Reported Concerns in Early Development that may Predict Specific Pervasive Developmental Disorder (PDD) Diagnoses

Background: Families of children with a Pervasive Developmental Disorder (PDD) have continually reported frustration with the process of diagnosing their child (Howlin & Moore, 1997). Despite reports of early initial concerns, generally between 18 and 24 months, the diagnostic process often takes several months or years. The process often involves multiple visits to a variety of different professionals with various diagnoses having been given. Parents typically report early concerns related to joint attention, imitation, gestural use, and babbling in early development (De Giacomo & Fombonne, 1998). However, it is unclear as to whether specific concerns are predictive of a later diagnostic category of PDD (i.e., Asperger Syndrome, Autism, PDD-NOS).

Objectives: Update our understanding of the experiences of families during the diagnostic process, specifically related to concerns in early development, which result in later PDD diagnoses.

Methods: Family members of children were invited to complete an internet questionnaire related to their child’s diagnostic history, through the Autism Spectrum Disorder-Canadian American Consortium (ASD-CARC) website. Questions included “How old was your child when you first became concerned?”, “What was of particular concern to you?” and “Who first recommended that your child be assessed for an Autism Spectrum Disorder?”

Results: Preliminary frequency analysis of the first twenty parent responses continued to reveal a discrepancy between the average age children received a diagnosis (M = 5 yrs 2 months) and the age at which family members had initial concerns (M = 2 yrs). The most common concerns reported by parents were: 1) Lack of language development (57%); 2) Repetitive or rigid behavior (43%); and 3) Lack of imitation (43%). Frequency of other concerns, such as self injurious behavior and violent behavior, will also be reported, as well as an analysis of age of diagnosis and type of concerns for each diagnostic category (Autism, Asperger Syndrome, PDD-NOS). Data collection is ongoing.

Conclusions: Understanding the experiences of families throughout the diagnostic process as well as concerns in early development compared to previous studies (Howlin & Asgharian, 1999; Gray & Tonge, 2001) can contribute not only to earlier identification of PDDs but may also help to clarify appropriate differential diagnostic procedures for professionals.