Enhancing Multidisciplinary Community Supports for Minority Preschool Children with Autistic Spectrum Disorders

Background: Families of preschool minority children with autism often lack access to quality comprehensive interventions.

Objectives: First, to compare communicative and adaptive functional profiles of minority preschool children with autism to other preschool developmental delays and explore the relationships of these measures to parental priorities. Second, to pilot a comprehensive treatment program that is accessible to minority families with limited resources.  

Methods: In Phase 1, chart reviews were conducted for 230 children ages 1-3 years with developmental delays in communicative, social-emotional, and adaptive skills. Standardized assessments included Bayley, Capute, Childhood Autism Rating, ADOS,  and Vineland Adaptive Behavior Scales. We developed structured interviews for family priorities, indicators of parental physical and mental health, and family supports.

In Phase 2, a 25-hour community-based treatment program known as PUENTES (Spanish word for bridges) for preschool children with autistic spectrum disorders was carried out. Mothers and at least one other family member were intensely trained to implement collaborative interventions to enhance communicative, behavioral, and adaptive skills. Core interventions included, discreet trials, structured teaching, picture exchange communicative systems. Heartland Hand in Hand model, family and sibling supports, speech and occupational therapies, and consultation with educational and human services professionals. Assessments at baseline included Psychoeducational Profile-R (PEP-R), the Adaptive Behavior Scales (VABS), and the Parental Sense of Competence Scale (PSCS). After 4 months, these measures were repeated by raters masked to child’s baseline.

Results: Of 230 children in cohort 1, 99 were diagnosed with autism, 83 with mixed developmental disorder (Capute Scale 71-85), and 48 with global developmental delay(Bayley MDI <70). Diagnostic groups differed significantly on communicative and adaptive functioning (p<0.001). Children with autism had the most difficulties in communication and adaptive behavior (p<0.001). Amongst all groups, parents' initial priorities were getting services (77%) and understanding children's needs (71%). Of the families seen in follow-up, 60% experienced high levels of stress, and 33% reported high rates of difficulty obtaining supports. Only 50% of parents rated their own physical health as excellent/very good and 22.5% reported peace of mind. Parents rated professionals as most helpful as follows: speech/occupational therapist (94%), physicians (85%), teachers (78%), and school administrators (68%).

Among the children in PUENTES program, major gains in communication, adaptive, and developmental skills occurred. All pre and post changes on PEPS-R, VABS, and PSCS were significant using paired t-tests (p<0.001). Parents reported their participation facilitated their children’s learning, communication, and adaptive skills and enhanced parental sense of competency. Parents also reported that this collaborative model made them better advocates for comprehensive services that were evidence-based for their children.

Conclusions: Difficulty accessing services and complexity of receiving educational supports are adversely impacting on physical and mental well-being of parents of children with communicative and adaptive functional delays. Our pilot data indicate that a collaborative program that bridges home, school, and the community has the potential to enhance capacity in resource limited settings by providing comprehensive preschool interventions for minority children with autism.