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

  • Jonathan M. Campbell
  • Daphne Greenberg
  • Peggy A. Gallagher
  • Zolinda Stoneman
  • Christina Simmons
ORIGINAL PAPER
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Abstract

Parents are critical for early detection of autism; however, children of low SES are identified later than their counterparts. Such delays in detection of autism may be attributed to limited parental knowledge of early developmental milestones and early signs of autism. Authors examined knowledge of developmental milestones and autism in 41 parents of low SES with low literacy. Participants were recruited from adult literacy programs and completed measures of developmental milestones and autism knowledge. Parents reported greater knowledge of motor milestones when compared to other milestones, including language, cognitive, social, and play milestones. Parent knowledge of milestones did not correlate with knowledge of autism. Parents overestimated social and play milestones that indicate autism risk, such as delays in responding to name and pointing to show interest, which may contribute to delays in detection of autism. Authors discuss implications of the results in terms of areas of future research.

Keywords

Autism Parent knowledge Low literacy Developmental milestones 

Eliciting parenting concerns and obtaining parent reports remain “the best researched and most accurate and effective” (Glascoe and Dworkin 1995, p. 834) methods available to professionals in detecting early developmental delays. Parent input is critical to developmental surveillance and screening as some behaviors noted by parents cannot be replicated in pediatric offices (Dumont-Mathieu and Fein 2005). As such, most developmental screeners and autism screeners developed for use with young children (e.g., Modified Checklist for Autism in Toddlers-Revised with Follow-Up; Robins et al. 2009) rely on parent report to provide information about symptoms suggestive of the presence of a delay. All told, parents are essential to effectively detect delays early in child development.

Detection of developmental delays, including autism, is hindered for minority children, children who live in poverty, and whose parents achieved lower levels of education. For example, several studies indicate that ethnic minority children received autism diagnoses at older ages than Caucasian children (Mandell et al. 2002) and research has documented racial/ethnic disparities in the recognition of autism, with Black and Hispanic children identified less frequently than their White counterparts (Christensen et al. 2016). The differences in rates of diagnosis appear to reflect disparities in diagnostic patterns rather than differences in prevalence. When compared with other groups, children from lower socioeconomic status are less likely to be diagnosed with autism before school entry (Yeargin-Allsopp et al. 2003). Poverty also impacts early detection of autism. For example, when compared to children from higher income households, children living in poverty were diagnosed significantly later (Mandell et al. 2005).

Delays and discrepancies in autism diagnosis may result from differences in parents’ knowledge of typical development across SES groups and race/ethnic groups (e.g., Mandell et al. 2009). For example, parent income predicts greater knowledge of children’s developmental milestones (e.g., Hess et al. 2004; Huang et al. 2005; Marshall et al. 2016). The same holds true for the relationship between parenting education and knowledge of children’s developmental milestones. For example, Marshall et al. (2016), Ratto et al. (2015), Reich (2005), and Hess et al. (2004) found that greater parental education predicted greater knowledge of child developmental milestones. Although the specific influence of literacy, as distinct from maternal education, on knowledge of milestones has not been examined, health literacy advocates consistently identify health information materials as written at levels that frequently exceed literacy recommendations (e.g., Shieh and Hosei 2008).

Research in the area of caregiver knowledge of developmental milestones has also documented differences in knowledge across domains that are particularly relevant to early detection of autism. Parents are generally less knowledgeable of social and play milestones when compared to language and motor milestones (Tamis-Lemonda et al. 1998; Tamis-Lemonda et al. 2002). For example, Tamis-Lemonda et al. (2002) found less accurate knowledge of timing of social and play milestones when compared to motor, language, and cognitive milestones for teenage mothers. Overestimating the timing of social and play milestones may correlate with delays in detecting concerns about development that are linked to autism risk.

Several surveys have documented lay public and parent knowledge about various aspects of autism, such as defining symptoms, interventions, and outcomes. Knowledge of autism differs across socioeconomic and race/ethnicity groups. Among the general public, for example, Holt and Christensen (2013) reported that college-educated individuals reported significantly higher knowledge of autism than individuals with less than a college education. Individuals with lower incomes endorsed less accurate knowledge about autism, such as reporting that parenting may cause autism. Likewise, Mitchell and Locke (2015) found that individuals with a college education were more accurate in identifying diagnostic traits of autism when compared to those without a college education.

Parents manage children’s health care, including understanding and sharing concerns about delays in children’s development. Therefore, an important consideration regarding discrepancies and delays in the early identification of autism involves parents’ health literacy. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion 2010, p. 1). The 2003 National Assessment of Adult Literacy (NAAL) documented that 22% of American adults demonstrated basic levels of health literacy, while 14% demonstrated below basic levels of health literacy (Kutner et al. 2006). Demographic characteristics are associated with health literacy. Adults living below the poverty line have lower levels of health literacy when compared to adults living above the poverty line (Kutner et al. 2006). Health literacy also affects how adults receive information about health. A higher percentage of adults with below basic and basic literacy levels receive health information from radio and television when compared to adults with higher levels of health literacy (Kutner et al. 2006).

Similar to general health literacy, race, ethnicity, and SES are also associated with how individuals receive information about autism. For example, Holt and Christensen (2013) found that Hispanic or Latino individuals were more likely to learn about autism through radio or television as opposed to newspaper, personal experience, or employment when compared to other ethnic groups. College graduates reported learning about autism during their education or their employment when compared to individuals with less than a high school degree. Mitchell and Locke (2015) further highlighted the important role of media in educating non-Whites and individuals without a college degree about autism. Non-Whites reported receiving information about autism from media more frequently (55.7%) than White counterparts (43.3%). Individuals without a college degree reported significantly less likelihood of learning about autism from school, work, or professional organizations (10.1%) when compared to those with a college degree (20.9%).

Given the important role of parents in the early identification of autism and the disparities in early identification for parents of low SES and low literacy, we sought to document parents’ understanding of early development and autism. Our first aim was to describe parents’ knowledge of developmental milestones, particularly their knowledge of the timing of social and play milestones due to their importance in signaling the presence of autism early in development. Second, we sought to document knowledge of autism among the same group of parents. Finally, we aimed to determine how parents of low literacy and low SES learned about autism.

Method

Participants

A total of 41 participants (32 women, 9 men; M age = 25.03 years; 92.7% African-American) were recruited from two adult literacy programs in a large metropolitan area in the southeastern United States (see Table 1 for demographic information). Self-reported mean annual income was approximately $4500.00 per family; participant reading grade equivalent scores ranged from 3.8 to 8.5 as measured by the Test of Adult Basic Education (CTB/McGraw-Hill 2008). For study inclusion, participants were required to have at least one child between the ages of 6 months and 48 months; no children could be identified with a disability.
Table 1

Participant characteristics (N = 41)

Variable

n

%

Min

Max

M

SD

Gender

 Female

32

78.0

    

 Male

9

22.0

    

Race

 African-American

38

92.7

    

 Other

2

4.9

    

 Caucasian

1

2.4

    

Ethnicity

 Non-Hispanic

38

92.7

    

 Hispanic

3

7.3

    

Age (years)

  

18.00

42.00

25.03

6.41

Highest grade completed

  

8.00

12.00

10.12

1.03

Reading levela

  

3.80

8.50

5.83

1.46

Annual incomeb

  

0.00

27.00

4.52

7.29

Number of children per family

  

1.00

11.00

2.34

2.32

Ages of children (years)

  

0.33

27.00

6.35

6.19

aReading levels are grade equivalent scores using the Test of Adult Basic Education; bAnnual income in thousands of dollars

Procedure

Authors conducted the current study within the context of a larger investigation aimed at understanding the beliefs, knowledge, and attitudes toward developmental monitoring for parents of low SES and low literacy. The larger investigation also aimed to evaluate parents’ perceptions of the “Learn the Signs Act Early” (LTSAE) public awareness campaign, which targets reducing time to diagnosis of developmental disabilities, particularly autism, in young children. The LTSAE campaign is sponsored by the Centers for Disease Control and Prevention (2016; for description of the campaign, see: http://www.cdc.gov/ncbddd/actearly/).

The purpose of the study was to evaluate participants’ knowledge of developmental milestones, knowledge of autism, and their attitudes, intentions, and behavior toward monitoring their children’s development. Participants were invited to participate in the study by adult literacy program staff members if they had children who fell within the appropriate age range. Participants who indicated interest in completing the survey scheduled an interview with study personnel. Participants provided written informed consent by reviewing a consent form, which was read aloud to participants prior to their written consent. Questions were read aloud and participants asked to respond verbally to all items. Participants were compensated $25.00 for completing the survey. Informed consent and the survey were completed in a single session, which typically lasted between 45 and 60 min. Surveys were completed in a small classroom or office at either literacy center. Institutional Review Board approval was secured by participating universities.

Measures

Knowledge of Developmental Milestones

We developed a survey of participants’ knowledge of children’s developmental milestones from three sources: (a) the Knowledge of Infant Development Inventory (MacPhee 1981), (b) a caregiver survey of developmental milestones developed by Tamis-Lemonda et al. (2002) for use with mothers of low income, and (c) developmental expectations published in the LTSAE campaign. Given the significance of early social and play development in the detection of autism, and the relative lack of knowledge and awareness of social milestones reported by caregivers as documented in the literature, we included multiple items regarding social and play development in the knowledge survey. We chose to report separately on knowledge items selected from prior surveys (i.e., MacPhee 1981; Tamis-Lemonda et al. 2002; 16 items) and items selected from the LTSAE campaign materials (14 items). As such, we calculated three knowledge scores: (a) one based upon the LTSAE developmental milestone cutoffs (LTSAE-M), (b) one based upon prior published caregiver inventories that included ranges for correct answers (OTHER), and (c) a total developmental knowledge score (TOTAL). We also calculated five domain scores for (a) motor milestones (7 items), (b) language milestones (7 items), (c) cognitive milestones (4 items), (d) social milestones (7 items), and (e) play milestones (5 items). Each domain score was calculated as a percentage correct score due to differing numbers of items across each domain. Kuder-Richardson 20 (K-R 20) = .57 for the total scale with Mdn item-total correlation = .20.

Knowledge of Autism

We sampled participants’ knowledge and awareness of autism using a modified version of Segall and Campbell’s (2014) Knowledge of Autism (KOA) questionnaire developed for use with educational professionals. The KOA questionnaire consisted of two sections. In the first section, participants were asked if they had ever heard the word autism or autistic; if so, participants were asked to describe autism or the term autistic then asked how they first heard about autism (i.e., “How did you first hear about autism?”). The second section consisted of 22 statements about autism (e.g., “Lots of times kids with autism get too focused on one thing,”) with response options of “Yes,” “No,” and “Do not know.” Correct responses were credited with one point, incorrect and “Do not know” responses received no credit. Correct items were summed to produce a total KOA score. “Do not know” responses were summed separately to produce a “Do not know” total score (KOA-DK). Consistent with Segall and Campbell (2014), we calculated a separate KOA-DK score to differentiate between incorrect beliefs (i.e., incorrect responses) from a lack of knowledge (i.e., “Do not know” responses). For participants who had heard of autism (n = 31), K-R 20 = .91 and the Mdn item-total correlation = .56. Copies of measures are available from the first author upon request.

Data Analysis

We calculated descriptive statistics for parents’ accuracy for child development milestones and autism knowledge. For all variables, skewness values ranged from − .69 to .90; kurtosis values ranged from − 1.86 to .79, which fall within guidelines for indicating normality of distributions (e.g., Kim 2013). We calculated Pearson’s product-moment correlations between child development scores and autism knowledge scores to examine relationships between these scales. We conducted a within-subjects repeated measures analysis of variance (ANOVA) to compare domain scores across each of the five domains derived from the child development survey. Finally, parent responses to the question “How did you first hear about autism?” were transcribed and coded using the constant comparative method (Charmaz 2006). The first author generated codes then shared codes and original transcripts with a graduate research assistant for independent coding of all responses. Coding reliability was established between the first author and a graduate research assistant.

Results

Knowledge of Developmental Milestones

For the OTHER developmental milestones knowledge survey, participant responses were scored as correct if the response fell within the appropriate range (see Table 2 for ranges). For these 16 items, the mean knowledge score was 7.61 (SD = 1.69; range = 3–11). Participants’ knowledge of specific developmental milestones ranged from a high of 87.8% accuracy for rating the milestone of children pulling to stand, to a low of 22.0% accuracy for the milestone of children showing interest in other children (see Table 2 for correct percentages for all 16 items). Participant responses ranged greatly; for example, the reported expected ages for the milestone of children “running easily” ranged from 12 to 72 months. With respect to early social and play delays associated with autism, parents’ accuracy for milestones ranged from 22.0% (i.e., age when children show interest in other children) to 53.7% (i.e., age when children cry when parent leaves).
Table 2

Participants’ reporting of children’s developmental milestones

Milestone (correct rangea)

Range

M

SD

% Cor

Motor

 Sit without falling over (5–9)

3–12

6.12

2.01

80.5

 Take first steps (8–13)

5–24

11.08

3.24

85.4

 Pull to stand (6–12)

4–48

9.56

6.95

87.8

 Crawl across floor (7–12)

3–10

6.30

1.59

39.0

 Run easily (18–25)

12–72

26.22

12.19

43.9

Social

 Cry when parent leaves (6–12)

0–24

7.76

5.60

53.7

 Look at adult point to object (9–14)

1–60

11.99

11.02

36.6

 Copy movements (9–12)

4–24

11.18

6.11

41.5

 Interest in children, non-sibs (18–24)

2–60

17.28

12.60

22.0

Play

 Simple social games (6–10)

3–96

20.23

20.00

26.8

 Pretend play (16–25)

4–48

18.60

9.63

34.1

Language

 Make babbling sounds (3–5)

2–12

5.55

2.74

53.7

 Respond to babbling (4–10)

2–24

8.29

4.21

63.4

 Say first word (12–14)

4–36

15.01

7.68

26.8

 Repeat word (9–13)

8–120

23.65

18.35

26.8

Cognitive

 Pick out things in pictures (24–28)

12–60

28.88

14.21

39.0

Total correct

3–11

7.61

1.69

N/A

All responses reported in months. % Cor percentage of respondents providing value falling within the correct range. aRanges from Tamis-Lemonda et al. (2002) and milestones reported in the Learn the Signs Act Early materials

Knowledge of Learn the Signs Act Early Milestones

In contrast to the OTHER scale, participant responses to the LTSAE milestone items (LTSAE-M) were scored as correct if the response fell at or below the specific cutoff. We reasoned that the purpose of the LTSAE materials was to alert caregivers to delays; therefore, we credited as correct any response that fell at or below the developmental milestone. For the 14 items, the mean knowledge score was 8.05 (SD = 3.11, range = 2–14). Participants’ knowledge of milestones presented in the LTSAE materials ranged from a high of 97.6% accuracy for walking and toilet training to a low of 29.3% accuracy for finding hidden objects and beginning sorting skills as well as 39% accuracy for make-believe play (see Table 3 for all 14 items).
Table 3

Participants’ reporting of children’s developmental milestones as reported in the Learn the Signs Act Early materials

Milestone (expected age) a

Range

M

SD

% Cor

Motor

 Walk alone (24)

6–30

14.90

5.24

97.6

 Fully toilet trained (60)

12–120

31.51

16.92

97.6

Social

 Smile at adult face (3)

0–24

5.05

5.68

48.8

 Respond to name (7)

2–48

12.21

11.32

41.5

 Point to show interest (18)

6–48

17.16

10.62

68.3

Play

 Make-believe play (24)

5.5–72

38.18

18.50

39.0

 Take turns in games (36)

12–96

43.00

19.37

48.8

 Share toys (48)

8–66

25.28

14.95

80.5

Language

 Nod for yes or no (12)

6–132

23.12

21.15

46.3

 2- to 4-word sentence (24)

9–84

27.68

15.92

68.3

 4- to 5-word sentence (36)

12–108

38.49

16.70

63.4

Cognitive

 Find hidden object (12)

6–48

24.73

13.44

29.3

 Build tower of 4 blocks (24)

10–72

32.25

15.59

43.9

 Begin sorting using shape/color (24)

16–108

42.55

19.46

29.3

Total Correct

2–14

8.05

3.11

N/A

All responses reported in months. % Cor percentage of respondents providing value at or below the expected age. aExpected milestone as reported in the Learn the Signs Act Early materials

Knowledge of Autism

Thirty-one (75.6%) participants had heard of autism or the word autistic; 10 participants (24.4%) had not heard of autism and responded to all KOA items with “Do not know.” For participants who had heard of autism (n = 31), we provide a descriptive analysis of their response accuracy (see Table 4 for all 22 items). As presented in Table 4, correct responses ranged from 74.2% accuracy (occurs equally across races) to 9.7% accuracy (occurs more frequently in boys versus girls). Participants’ scores ranged from 0 to 18 correct, out of a possible total of 22, with a mean of 10.77 (SD = 6.20). KOA-DK scores ranged from 0 to 22 with mean of 7.39 (SD = 8.23). Autism knowledge did not correlate with either general developmental milestone knowledge (OTHER; r = .14) or LTSAE milestone knowledge (LTSAE-M; r = .15; see Table 5 for complete correlational results).
Table 4

Knowledge of autism item statistics for participants having heard of autism (n = 31)

Itema

Correct

Incorrect

Do not know

Occurs mostly in White families

74.2

3.2

22.6

May not look when someone points

67.7

6.5

25.8

Sometimes rock back and forth

64.5

0.0

35.5

May not look up when spoken to

64.5

3.2

32.3

Many have problems with change in routine

64.5

6.5

29.0

Mostly in middle class families

61.3

6.5

32.3

May have trouble talking

61.3

16.1

22.6

Look different from others

58.1

19.4

22.6

May hurt themselves, like bang head

58.1

9.7

32.3

May react strangely to smells, tastes, sounds

54.8

6.5

38.7

May seem deaf

51.6

9.7

32.3

Sometimes repeat what is said to them

51.6

3.2

45.2

May have problems with aggression

48.4

25.8

25.8

A lot of times do not know how others feel

48.4

25.8

25.8

Get too focused on one thing

48.4

12.9

38.7

Autism is very rare

38.7

25.8

35.5

May not show interest in other people

35.5

29.0

35.5

May lose skills once had, like stop saying words

32.3

12.9

54.8

Have a hard time looking at others

29.0

35.3

35.5

A lot do not like to be held

29.0

32.3

38.7

Do not play “pretend”

25.8

38.7

35.5

Occurs the same in boys and girls

9.7

48.4

41.9

All responses reported in percentages. aItems are presented in descending order in terms of percentage correct

Table 5

Correlations between knowledge of child development, knowledge of autism, and do not know responses

 

LTSAE -M

OTHER

TOTAL

KOA

KOA -DK

LTSAE-M

    

OTHER

.11

   

TOTAL

.89***

.56***

  

KOA

.15 a

.14 a

.27 a

 

KOA-DK

− .09 a

− .09 a

− .21 a

− .96 a ***

LTSAE-M Learn the Signs Act Early Milestones score, OTHER other developmental milestones score, TOTAL Learn the Signs Act Early Milestones + other developmental milestones score, KOA Knowledge of Autism, KOA-DK Knowledge of Autism, Do not Know responses, aCorrelations based on 31 participants who reported having heard of autism; all other correlations based on 41 participants. ***p < .000

Sources of Knowledge about Autism

For participants who had heard of autism, responses regarding where and how they learned about autism were coded into five categories. Multiple codes were allowed if participants identified several experiences and sources. Participants generated 36 coded responses (i.e., five participants identified two sources in their responses). Inter-rater reliability across coders was excellent (κ = .92). Participants reported learning about autism from the following: (a) a friend or family member (e.g., niece or nephew) affected (e.g., “my little cousin is autistic,” “a friend’s brother is autistic,” “All throughout my life, my cousin has it,” n = 16; 44.4%), (b) media (e.g., “saw it on a commercial,” “on the radio, Focus on the Family,” “Scrubs episode when one doctor told another his son has it,” n = 11; 30.6%), (c) school experiences (e.g., “in public school classroom,” n = 4; 11.1%), (d) healthcare encounters (e.g., “in the hospital,” n = 2; 5.6%), and (e) general conversations (e.g., “people talking about it in a conversation,” n = 2; 5.6%). One participant did not recall how or where she had heard the term autism.

Comparing Accuracy of Child Development Knowledge across Domains

The within-subjects repeated measures ANOVA contrasted participants’ knowledge of child development across the following domains: motor, language, cognitive, social, and play. Mauchly’s test indicated that the assumption of sphericity was not violated, χ2 (9) = 9.49, p = .394. The analysis revealed that participants’ knowledge significantly differed across domains, F (4, 160) = 20.23, p < .001. Follow-up contrasts using Bonferroni correction revealed that participant knowledge of motor milestones was significantly greater than all other domains; participant knowledge of language milestones was significantly greater than cognitive milestones. No other contrasts between domain scores were significant (see Table 6 for means and summary of follow-up contrasts).
Table 6

Participant accuracy scores for developmental milestones across domains (N = 41)

Domain

M

SD

Language

Cognitive

Social

Play

Motor

75.96

15.46

*

*

*

*

Language

49.83

24.35

*

ns

ns

Cognitive

35.37

30.09

 

ns

ns

Social

44.95

21.08

  

ns

Play

45.85

24.18

   

M values are percentage correct. *Follow-up contrasts are significant at p < .05 level of significance after Bonferroni correction. ns non-significant

Discussion

Parents with low literacy and of low SES reported variable knowledge regarding children’s early developmental milestones across multiple domains. Parents also reported a wide range of expectations for developmental milestones, with some responses much earlier that normative expectations and others well past normative expectations. Over 75% of parents had heard the term autism, with most hearing about autism from family members or through mass media outlets, such as radio and television programming. Within the group of parents familiar with the term autism, there were many instances of inaccurate responding or lack of knowledge (i.e., responding “Do not know”) about defining characteristics, associated features, and general information (e.g., males outnumbering females).

Knowledge of Developmental Milestones

Overall, parents reported variable knowledge of early developmental milestones, with significantly greater knowledge of motor milestones, such as age child takes first steps, pulls to stand, and sits without falling over, when compared to social, play, language, and cognitive milestones. Our findings corroborate others’ findings of greater accuracy in motor domains when compared to social and play milestones for low-income mothers (e.g., Tamis-Lemonda et al. 2002).

With respect to developmental milestones presented in the LTSAE materials, several developmental milestone items are of particular interest vis-à-vis early detection of autism. First, over 60% of participants identified an age that fell above the normative age for children to begin to engage in pretend play, the absence of which is associated with autism in young children (e.g., Robins et al. 2009). Second, roughly 60% of participants incorrectly identified an age by which most children will respond to their name; lack of responsiveness to name is an early concern associated with autism (e.g., Robins et al. 2009). Third, roughly 30% of participants identified an age that exceeded the expected ages for proto-declarative pointing, a deficit that is also associated with autism (e.g., Robins et al. 2009). A potential implication is that parent overestimation of the timing of social, communicative, and play milestones may result in delays in parents experiencing concerns regarding their children’s development.

Knowledge of Autism

Roughly 75% of participants had heard the term autism or autistic. Within this group, however, accuracy of defining symptoms, associated features, and prevalence, ranged widely. Knowledge items that were answered accurately by more than half of our sample involved information about equal risk across racial and SES groups and several core features, such as difficulty with following point, repetitive rocking, difficulties with changing routines and repetitive speech, among others. In contrast, there was evidence of limited knowledge about symptoms and features of autism (e.g., poor eye contact; limited play skills; difficulties with social understanding). Mitchell and Locke’s (2015) also found relatively low accuracy for key indicators for autism for individuals without a college education. Our findings also suggest that parent knowledge of general developmental milestones does not correlate with knowledge specific to autism. As such, messaging specific to autism is important to disseminate to parents.

Again, lack of knowledge about autism symptomatology may contribute to delays in parents experiencing concerns and seeking services for their children. Several items were endorsed incorrectly by at least 25% of our sample, such as difficulties with eye contact, pretend play, and equal risk for boys and girls. A sizable minority of participants, including those who had and had not heard of autism, reported that they did not know the answer to questions posed on the autism knowledge survey. Findings suggest that many participants are not exposed to information about autism and, among those who do report familiarity with autism, knowledge is lacking in significant areas relevant to autism.

Sources of Knowledge About Autism

Roughly one third of our sample reported learning about autism through media outlets and identified television and radio programming as the most frequent sources. One participant identified first hearing about autism from an episode of the television show “Scrubs,” where a character shares concerns about the presence of autism for another character’s son. Consistent with other researchers’ findings (e.g., Holt and Christensen 2013; Mitchell and Locke 2015), few participants received information about autism through encounters with the healthcare system, such as contact with physician, hospital, or clinic. Likewise, no participants in our sample identified traditional print materials, such as health pamphlets, as sources of information about autism. Again, our findings are consistent with the literature reporting that individuals rarely use print materials to access information about autism (Holt and Christensen 2013).

Suggestions Based on Study Findings

Although no single study should inform practice or policy, our findings suggest that early social and play developmental milestones are worthwhile targets in messaging about monitoring of early development. Such messaging may occur in various contexts and outlets, such as during interactions with healthcare providers, within parent educational materials, such as “baby books” designed to document a child’s mastery of different developmental milestones, and interactions with early childcare professionals. The content presented in the LTSAE campaign provides a good example of how the focus on developmental milestones may expand from physical and motor milestones, such as height, weight, and first steps, to social-communicative milestones, such as pretend play, proto-declarative pointing, and responsiveness to name. Although we did not inquire about sources of typical development in the present study, Sundstrom (2016) found that biological mothers of newborns rely on various sources of information about children’s health, including mass media, social networks, e-mail, the Internet, and community forums.

Within our sample, parents reported hearing of autism through interactions with extended family and friends whereas many others reported hearing of autism through broadcast media, particularly television programming. Given the impact of mass media, it is important that programming provide accurate information about autism. As the field transitions to the use of autism spectrum disorder over the term autism, it is important that messaging provides clarity regarding the use of the term autism. In contrast to family and media, healthcare professionals were rarely identified as sources of information about autism, which speaks to the importance of effective messaging outside of traditional contexts and materials, such as a pamphlet provided to a parent during a well-child visit.

Limitations and Recommendations for Future Research

Study findings and interpretations must be tempered by several limitations of the investigation. First, characteristics of our sample limit the generalizability of findings. Our sample consisted of parents of low SES with low levels of literacy, which was by design based on the purpose of our investigation. Relatedly, our design did not include a comparison group; therefore, it is not known if our sample’s knowledge is similar to parents of higher SES or higher levels of literacy. Further, participants were recruited from a single geographic location and their knowledge of developmental milestones and autism may not reflect parental knowledge from other locales. Overall, it is not known whether findings regarding knowledge of milestones and autism apply to other groups of parents. Given disparities in early detection of autism for other minority groups, such as Latina/Latino families, future research examining developmental milestone knowledge and knowledge of autism should continue with this group of parents. Second, our assessment of parents’ knowledge of autism was fairly cursory, particularly regarding the extent of exposure to different messages and sources about autism. In-depth interviewing parents regarding where and how they have heard about autism may further inform efforts to disseminate findings to this group of parents. Third, our sample size was also fairly small which limited statistical power to detect relationships among variables and potential differences in knowledge of development across domains. Despite limits in statistical power, however, several relationships and differences were observed in the statistical analysis. Finally, our measures utilized the term “autism” as opposed to “autism spectrum disorder.” As the field has moved to adopt the term “autism spectrum disorder,” it is important to document parents’ familiarity with the newer term.

Notes

Acknowledgments

The authors wish to thank Ashley H. Johnson, PhD, for her helpful feedback and comments on the manuscript.

Author Contributions

JMC: collaborated in the design and execution of the study, analyzed the data and reported results, and led writing of the manuscript. DG: collaborated with the design and execution of the study, and collaborated with writing and editing of the manuscript. PAG: collaborated in the design and execution of the study, and collaborated with writing and editing of the manuscript. ZS: collaborated with the design and execution of the study and editing of the manuscript. CS: collaborated in the development of measures and execution of the study.

Source of Funding

The research was funded by the Centers for Disease Control and Prevention (CDC), National Center on Birth Defects and Developmental Disabilities (NCBDDD) under Cooperative Agreement U01DD000231 to the Association of University Centers on Disabilities (AUCD).

Compliance with Ethical Standards

Conflict of Interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed were in accordance with the ethical standards of the institutional review boards of the University of Georgia and Georgia State University and with the 1964 Helsinki declaration and its later amendments.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Disclaimer

The content does not necessarily reflect the views and policies of CDC, NCBDDD, nor AUCD.

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Copyright information

© Springer Nature Switzerland AG 2018

Authors and Affiliations

  1. 1.Department of Educational, School, and Counseling PsychologyUniversity of KentuckyLexingtonUSA
  2. 2.Georgia State UniversityAtlantaUSA
  3. 3.University of GeorgiaAthensUSA

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