Knowledge of Autism for Parents with Low Literacy: Description and Relationship to CHILD Development Knowledge

Background:  Parents are often the first to note delays in child development and concerns indicative of an autism spectrum disorder (ASD).  “Learn the Signs. Act Early” (LTSAE) is a public health campaign targeting improved awareness of early developmental delays and symptoms of ASD.  Concerns have been raised regarding the utility of LTSAE materials for various groups, such as parents with low literacy; efforts to modify materials to better inform parents with low literacy are needed to maximize their impact.  To tailor public health messages, it is critical to understand what parents with low literacy know about ASD. 

Objectives:  Investigators documented participants’ knowledge about autism and determined areas of limited knowledge.  Investigators examined relationships between participants’ general knowledge of child development and autism knowledge.  The overall goal of the research was to identify content for future LTSAE campaigns and explore relationships between autism knowledge and knowledge of general child development. 

Methods:  Forty-one participants (32 mothers, 9 fathers; M age = 25.03; SD = 6.41 yrs; 92.7% African-American) with low literacy (M grade-equivalent for reading = 5.83; SD = 1.46) completed interviews to assess their (a) knowledge of autism, (b) knowledge of developmental milestones featured in LTSAE materials, and (c) knowledge of other motor, language, social, play, and cognitive developmental milestones.  Autism knowledge was assessed via the 22-item Knowledge of Autism (KOA) scale, knowledge of LTSAE milestones was assessed via a 14-item LTSAE Survey (LTSAE-S), and knowledge of additional developmental milestones was assessed via a 16-item survey of development (OTHER).  Participants could respond to the KOA items with a “Don’t Know” response.  Readability of surveys fell within the 4^th-5^th grade reading level; scores were calculated by adding number of items correctly answered.  For the KOA, “Don’t Know” responses were calculated separately.

Results:  KOA scores ranged from 0-18 (M = 8.15; SD = 7.13). KOA “Don’t Know” responses ranged from 0-22 (M = 10.89; SD = 9.47).  LTASE-S scores ranged from 2-14 (M = 8.05; SD = 3.11); OTHER scores ranged from 3-11 (M = 7.61; SD = 1.69.  The KOA item asking if autism affected races equally was correctly endorsed by a high of 56% of participants; the KOA item asking if autism affected boys and girls at the same rate was correctly endorsed by a low of 7% of participants.  Several indicators of autism were correctly identified by fewer than 25% of participants: difficulty with eye contact, problems with pretend play, and focusing on single topics. KOA scores did not correlate with LTSAE-S scores, r(39) = .27, ns, or OTHER scores, r(39) = .27, ns.  “Don’t Know” scores also did not relate to LTSAE-S or OTHER.

Conclusions:  Parents with low literacy reported variable knowledge about autism, including indicators of autism, such as poor eye contact and pretend play skills.  Knowledge of autism did not correlate with knowledge of other developmental milestones, suggesting that parent knowledge of general milestones may not equal knowledge about problems suggestive of autism. Findings highlight the need for specific information about ASD for parents.