A Family Centered Perspective on Addressing Feeding Concerns of Parents of Children with ASD

Background:  

Family-centered care for children with autism spectrum disorder (ASD) includes working in partnership with parents and providing supports and services that are responsive to parents’ needs.  Children with ASD often display restrictive or rigid behavioral patterns related to eating such as only eating specific foods, only eating under specific circumstances, and general problem behaviors around mealtimes.  Because behaviors related to feeding influence families, addressing parenting feeding concerns can be considered not only a child need, but also an aspect of family-centered care.

Objectives:  

1. Identify the concerns of parents around feeding behaviors of their children with ASD.
2. Identify of the frequency that parents describe their children having received therapy in relation to parent feeding concerns.

Methods:  

This paper draws from questions from an online survey sent to parents that had an  ADOS on file at a local autism network treatment center.  Respondents include 113 parents (90% female) of children with ASD (ages 5-13).  Parents filled out surveys as well as open and close ended questions regarding feeding concerns. This paper focuses on three questions: 1) Has a therapist worked with your child on eating issues/behaviors? 2) Do you currently have or have you in the past had concerns about your child's eating behaviors? 3) Please describe the concerns you have or you had related to your child's eating behaviors? The results of the third question were coded thematically by researchers familiar with feeding issues.  If a parent’s answer fit into more than one theme it was coded multiple times.

Results:  

The results indicate that 41% of parents currently have or in the past have had feeding concerns but have not had a therapist work on feeding behaviors (see table 1).   

Table 2 lists the frequencies and percentage of parents that had each type of concern and if their child had worked with a therapist.  Limited food variety was the most common concern (50 respondents) but was still infrequently addressed by a professional (34%).  While there is a general lack of treatment for feeding concerns, the lack of treatment for overeating as a concern particularly stands out. 

Conclusions:  

This study found a gap between the feeding concerns of parents of children with ASD and professional services provided to treat those concerns.  Although the causes for this gap were not clearly identified as part of this study, it is important for professionals and systems working with families of children with ASD to recognize that this is a gap.  Minimizing that gap is an important aspect of providing family-centered care that addresses parents’ concerns.