Parents' Perspectives on Screening for Developmental Disabilities Including Autism At 12-Month Preventative Care Visits

Background: The typical age of diagnosis is somewhere between 3-4 years of age (Mandell et al., 2005).  Yet symptoms are present as early as 12 months and many parents identify concerns by 14 months (Baranek, 1999; Chawarska et al, 2007; Ozonoff et al., 2010).  Primary Care Providers (PCPs) are key in the lives of infants and their families through preventative care visits (PCVs). Screening of toddlers for ASD at preventative care visits is now recommended (Johnson & Myers, 2007), but few PCPs are screening for ASD below 18 months. Further, little information is available about parent’s perspectives on screening for ASD at younger ages.

Objectives: To explore parents’ perspectives of primary care providers screening for developmental issues, including ASD at 12-month PCVs.

Methods: Three focus groups were held with 21 parents whose child had recently (within 3 months) had a 12-month PCV. A grounded theory approach was used in this qualitative study. Sessions were audio-recorded, transcribed, and analyzed using Atlas.Ti software.  The research team reached consensus on 5 primary open codes and 25 axial codes.  Open codes focused on issues related to interpersonal interactions, tool design, procedures, context, and ethical/moral dilemmas.  Codes with the highest frequencies were determined most salient in this analysis and were further examined for themes and patterns.

Results: Parents’ most frequently discussed topics included (a) interpersonal issues, especially a need for clear evidence, and (b) tool design. With respect to the “Need for Clear Evidence”, parents expressed a range of perspectives about developmental and ASD screening at 12-month PCVs.  Parents with concerns about their child’s development said they were open to screening and wished their PCP had screened their child.  Other parents were hesitant about ASD screening and the possibility of alarming parents unnecessarily. Parents also had questions about how definitive an ASD screening at 12 months could be, and several confused screening with diagnosis.  With respect to “Tool Design”, parents showed preferences about the type of screening tool and process they preferred. For example, some parents who had experienced questionnaires preferred specific questions (e.g., Does your child use certain sounds, number of words) rather than “yes/no” questions (e.g., Does your child use words?) or being asked broadly about their “concerns.”  Others liked “just having a conversation” with the pediatrician about what the child was or was not doing. Other information was gained about parents’ preferences related to screening and will be provided.

 Conclusions: The results of this study can be used by researchers, primary care providers, and families to reflect on parents’ perspectives on developmental surveillance and ASD screening at 12-month PCVs. It can also be a vital component of comprehensive continuing education efforts aimed at providing up-to-date information on ASD screening.  Designing and implementing screening tools that are effective and accepted by PCPs and parents may be key to the actual use of screening tools to detect ASD in young children in primary care settings.