Revisiting a "WAIT and SEE" Mindset to Improve Early Intervention Referrals

Background:

Advances in early screening and diagnosis make it feasible for experienced clinicians trained on validated tools to diagnose ASD by 18-24 months of age (Guthrie, Swineford, Nottke, & Wetherby, 2013). In spite of this, the median age for Autism Spectrum Disorder (ASD) diagnosis in the US is 4-5 years (Baio et al 2018), far beyond the window of opportunity for early intervention (EI).

There is often a delay between suspecting concerns and receiving services (Harrison & Roush, 1996). Many believe children will outgrow concerns (Wall et al., 2005). Building on the literature, a quasi-experimental design is used for an IRB-approved study of Primary Care Providers’ (PCP) and parents' views on a 'wait and see' mindset.

Objectives:

To determine whether and why some families and PCPs decide to wait before referring children with signs of delay for EI services and to gather suggestions for how to increase the willingness of PCPs and families to refer early.

Methods:

Parents of children with autism, some receiving EI, were sent an online survey and asked to participate in a phone interview. PCPs affiliated with a pediatric organization in a metro area were sent an online survey to complete.

Questions focused on: extent to which PCPs and families are using a 'wait and see' approach for developmental concerns; knowledge of and attitude towards EI/Part C

Results:

Family survey

• Completed by 13 of 50 families (26% response rate); additional surveys will be collected until April 2019
• 6 families consenting to a phone interview will complete a standardized qualitative interview by April 2019
• 10 of 13 had concerns about delay prior to age 2
• 11 of 13 relied on their PCP to make the referral
• Most believed their child would outgrow the problem

Primary Care Provider survey

Completed by 72 of 210 providers (34.30% response rate)

PCPs’ views on ‘Wait and See’:

• Families more likely to have this mindset (n = 40; 55.60%)
• Both tend to equally have this mindset (n = 18; 25.00%)
• PCPs more likely to have this mindset (n = 7; 9.70%)
• Neither have this mindset (n = 7; 9.70%)

PCPs admitting to personally taking this view:

• I have used ‘wait and evaluate further’ (n = 41; 56.90%)
• I have taken a ‘wait and see’ approach (n = 19; 26.40%)
• I have not been in this situation (n = 8; 11.10%)
• 1 BLANK; 3 who marked both ‘wait and see’ and ‘wait and evaluate further’

Conclusions:

Family responses indicated that they might have sought a referral earlier if they had a better understanding of the signs of autism or developmental delay and that early intervention could help their child gain important skills. Families stated that they wished they had been aware of services that were available for their child/family.

PCP responses indicated a need for more training during residency and practice in early recognition of signs of autism, along with more time for developmental screening.