Rural Parents' Knowledge of Autism and Child Development

Background:

Literature suggests that children in rural areas and from poorer households receive diagnoses 5 to 8 months later than those in urban and middle class homes (Mandell et al., 2005) and these families have limited to no accessibility to trained professionals specializing in autism (Stahmer, 2007) as well as limited accessibility to reliable information about autism (Peacock et al., 2012).  Parents play a critical role in the early identification process by relaying developmental information and concerns to their physician (Woods & Wetherby, 2003). However, very little is known regarding rural parents’ general knowledge about autism and child development, which limits the development of appropriate dissemination materials.

Objectives:

To obtain a baseline measure of rural parents’ knowledge about autism and child development.

Methods:

Rural primary caregivers of children under 6 years of age who live in a rural area as designated by the 2010 US Census Bureau (under 2,500 people) were invited to complete a 20-question survey via Qualtrics online survey software. Participants are recruited through their local community events such as holiday festivals and school events. Researchers also distributed CDC Learn the Signs-Act Early Alabama program handouts to participants.

Results:

Thus far, 57 surveys have been collected and analyzed. Recruitment is ongoing to achieve a proposed sample size of 500. Theme analysis will be completed on open-ended survey questions such as “What do you think causes autism?”. Descriptive data will be presented on multiple choice survey questions. Preliminary analyses on a small sample of questions are presented here. Eighty-nine percent of rural parents felt that early intervention could improve autism symptoms. Eleven percent thought that autism runs in families; 42 percent thought it does not run in families, and the remaining respondents were unsure. Regarding development, eighty-six percent indicated that children could learn language skills through play and 90 percent thought that talking to children helps them learn language. When parents were asked at what age autism can be diagnosed, responses ranged from birth to early school age. When asked whom they should contact with concerns about their child’s development, only 44 percent would contact their physician. Other responses included “DHR,” “a child development center” and “a friend who is a doctor.” Finally, when asked what behaviors were characteristic of autism, only twenty-five percent indicated diagnostic symptoms related to social interaction, communication or repetitive behavior (DSM-V, APA, 2013). Other responses included, “hyper,” “get really annoyed,” “no emotion,” “smart,” loner” and “great in math.”  Additional data collected prior to the 2015 IMFAR annual meeting will also be presented.

Conclusions:

Based on preliminary analysis in this limited sample, parents seem more knowledgeable about certain areas of development (age of first words) and autism (age of diagnosis) than others (symptoms of autism). Yudell et al. (2012) suggested that novel and culturally sensitive materials regarding autism should be developed for underserved communities. This project is an important first step to meeting this need as results could directly inform dissemination research efforts, thereby improving the accessibility and quality of care available to rural families.