Why High-Risk Families Decline Early Treatment: Barriers to Treating at-Risk Siblings

Background: Prospective studies of infant siblings that later develop autism show the emergence of symptoms within the first year of life (Ozonoff, et al., 2010, Macari et al., 2012).  A small body of literature explores the treatment of very young children at high risk for ASD (Bradshaw et al., 2014).  The subset of studies that examine the feasibility of intervention for very young infants, 12 months of age or younger, have small sample sizes suggesting parents may decline these types of services. Little research has been conducted on the factors that influence parents’ decisions to enroll their infant, who does not yet have a clinical diagnosis, in very early intervention.

Objectives: The purpose of this study was to examine factors influencing decision making of high risk families to participate in early social communicative treatments for their at-risk infant.

Methods: Twenty eight participants, 12-18 months, were evaluated from a prospective study examining infant siblings at risk for developing ASD.  Infants exhibiting delays in social communication were invited to participate in a 12-week adapted Pivotal Response Treatment (PRT).  Questionnaires measuring degree of parental concern for their infant’s development were collected.  An interview was conducted with families who declined participation or discontinued treatment.

Results: Of the 28 HR infants who were evaluated, 17 (61%) met inclusion criteria.  Twelve families (71%) declined participation.  Five families (29%) elected to enroll in treatment.  Of these five, three (60%) discontinued participation within the first four sessions. The following factors were reported by the 15 families (88%) who declined participation or discontinued treatment. Five families (33%) reported more than one factor impeding participation. 

Factor 1: Distance to the Clinic. Seven families (47%) reported distance as a factor. All of these families lived >50 miles round trip from the Clinic.

Factor 2: Early Intervention. Two families (11%) enrolled in state provided home based early intervention instead of our clinic-based treatment. 

Factor 3: Family Commitments. Three families (13%) reported significant commitments at home related to the older siblings with Autism and other disabilities.

Factor 4: Parental Concern. Five families (33%) reported little to no concern regarding their child’s development despite clinicians concerns.

Factor 5: Unknown. Three families (20%) did not provide a reason for declining treatment. 

Conclusions: Results from this pilot study indicated that few families expressed interest in treatment.  Although many families reported distance to the clinic as a barrier, for others, home based intervention was more practical. Others declined treatment because of family commitments involving older siblings with disabilities in the home.  A proportion of families did not express the same level of concern for their child’s development as the clinicians.  One interpretation of this mismatch is that parents may be comparing the development of their younger child with the older sibling who has autism, often minimizing the developmental concerns of the younger child. While treating high risk infants who demonstrate developmental delays may seem intuitive, this preliminary study suggests continued research is needed regarding the feasibility of these types of very early treatments.