Family-Unit Needs of Families That Include an Infant or Toddler with a Diagnosis of Autism Spectrum Disorder (ASD) Enrolled in Part C Early Intervention Programs in Kansas

Abstract

This study explores the family-unit needs of families that include an infant or toddler with a diagnosis of autism spectrum disorder (ASD) enrolled in Part C early intervention programs in Kansas. For families of children with ASD, unmet need of families early in the process might contribute to reported long-term negative impacts of raising a child who experiences ASD. In considering the needs of all family members, it is critical to consider the varied characteristics of children and families. A first step towards meeting family needs is a systematic assessment of those needs. This study suggests that priority support needs for families at this stage include Getting Services and Teaching. The pattern of findings suggest that higher needs for support across domains are reported by parent of infants and toddlers who also report that the impact of ASD on their child’s development is severe or profound. There is also a trend suggesting higher needs for support among parents reporting lower income. Future research is needed to compare the results of this subset of parents to parents in Part C programs across the nation. Additional work to validate the Family Needs Assessment Scale (FNA) used in this study for families with children in the birth to three population and specifically the birth to three population with a child with a diagnosis of ASD is needed. The FNA should also be explored as an interview tool to be used by early intervention staff.