Influences on Parent Perceptions of Autism Severity

Abstract

Research in autism spectrum disorder (ASD) often relies on parent report for describing behavior and symptoms. Psychometric studies in assessment have supported the utility of parent report; however, cultural and external factors may influence ratings of severity. The purpose of this study was to investigate if parent characteristics influence the severity rating of ASD over and above child characteristics. Using the 2009–2010 National Survey of Children With Special Health Care Needs (NS-CSHCN), we examined 3,037 parents who answered questions about their child’s ASD symptoms. We used hierarchical multiple regression to assess child-level variables (age, developmental delay, intellectual disability, and number of co-occurring emotional or behavioral conditions) and family-level variables (education, income, and language). We also performed mediation analyses to examine the relationship between language and severity ratings. Parents rated their child’s ASD as mild (52.3%), moderate (36%), or severe (11.8%). Parent-level variables explained a significant amount of variance over and above child-level variables. Several different stressors and challenges for English Language Learner parents mediated the relationship between language and severe ASD ratings. When asking parents to evaluate a child’s ASD symptoms, clinicians and researchers must consider the influence of sociocultural factors on ratings. In addition, because parent perception can drive help-seeking behaviors, professionals need to understand that there may be differences across sociocultural groups. Future research should investigate which sociocultural perceptions or expectations may be affecting parent ratings of ASD severity.

Keywords

autism spectrum disorders culture

Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by impairments in social communication and the presence of restricted and repetitive behaviors (American Psychiatric Association [APA], 2013). ASD is a heterogeneous condition and encompasses individuals who have varying severity of symptoms, co-occurring difficulties, and corresponding needs for support. Definitions of symptom severity vary depending on the type of measure used as well as how the rater conceptualizes severity. Severity indicators may consist of a total score, clinical judgment, parent rating, or the level of supports needed. A variety of sources may inform the rating of severity, including adaptive functioning and emotional or behavioral difficulties, learning disabilities, core ASD symptoms, and stress on caregivers. Furthermore, different raters may understand the concept of severity differently (Zablotsky, Bramlett, & Blumberg, 2015), and there may be differences in parent perception of severity compared with a severity index based on measurement, clinical judgment, or teacher judgment.

Despite the lack of consensus regarding the definition and conceptualization of severity, we need a better understanding of the factors influencing severity. In particular, parent perceptions of severity are important to understand because those perceptions may ultimately drive help-seeking behaviors and treatment decisions (Mire, Gealy, Kubiszyn, Burridge, & Goin-Kochel, 2015). Furthermore, interpretations of symptoms, disorders, and therapies within a cultural context may influence parents’ ability or desire to acquire assistance for their child.

Influences on Symptom Severity

Child Specific Factors

Existing research suggests that both respondent-specific and child-specific factors influence the rating of ASD severity. In terms of child-specific factors, the age of a child, the presence of language impairments, level of intellectual functioning, or the presence of co-occurring problem behaviors may influence severity ratings. With regard to age, some core symptoms of ASD may be more apparent in younger children, leading parents to rate children and adolescents as having more severe presentations than adult children. For example, restricted and repetitive behaviors are less severe and less frequent in adults with ASD than in children or adolescents (Esbensen, Mailick Seltzer, Lam, & Bodfish, 2009). With more mild restricted and repetitive behaviors, adults with ASD may appear to have fewer functional impairments, resulting in parents perceiving a less severe ASD presentation. However, other research has suggested that severity of ASD symptoms is generally stable across time, and that age alone does not explain severity (Gotham, Pickles, & Lord, 2012).

Intellectual functioning has also been associated with measures of ASD severity (Gotham et al., 2012), and may moderate the relationship between age and restricted and repetitive behaviors (Esbensen et al., 2009). Parents of children with ASD and concurrent intellectual disability tend to report more ASD symptoms, greater severity overall, and perceive their child’s behavior problems as more stable and less controllable (Hartley, Schaidle, & Burnson, 2014) than parents of children with ASD alone. Similarly, more significant theory of mind deficits and lower scores on adaptive behavior measures have been found to predict severity ratings of ASD (Gotham et al., 2012; Hoogenhout & Malcolm-Smith, 2017).

A child’s gender may influence parent perception of severity. For example, males with ASD may display more severe or frequent restricted and repetitive behaviors and interests than females (Hattier, Matson, Tureck, & Horovitz, 2011). Currently, research suggests that females with ASD are more likely to have concurrent intellectual disability and extreme behavior problems (Frazier, Georgiades, Bishop, & Hardan, 2014), and parents of females with ASD report more stress than parents of boys with ASD (Zamora, Harley, Green, Smith, & Kipke, 2014). However, the historical emphasis on the male-biased diagnostic criteria suggests that sex-differences in ASD symptomology are still unclear, thus no firm conclusions about gender can be drawn (e.g., Haney, 2016; Wilson et al., 2016). Nevertheless, a child’s gender may influence parent perception of ASD severity, given culture-specific gender socialization practices for playing, talking, and interacting (Goldman, 2013), the salience of social communication deficits (Lai et al., 2011), and the presentation of specific co-occurring symptoms (Begeer et al., 2013).

Many studies have found more severe ASD symptoms among individuals with a concurrent neurodevelopmental (Ko, Kim, Kim, Song, & Cheo, 2016; Lee, Martin, Berry-Kravis, & Losh, 2016), emotional (Chang, Quan, & Wood, 2012), or behavioral disorder (Rattaz, Michelon, & Baghdadli, 2015). Although it is likely that such concurrent disorders influence the expression of core ASD symptoms, there is also evidence that co-occurring problems may cause more distress to caregivers than core ASD symptoms alone (Lecavalier, Leone, & Wiltz, 2006). Thus, a parent of a child with significant co-occurring emotional and behavioral problems may perceive their child’s ASD symptoms as more severe than a parent whose child is not experiencing those co-morbid difficulties. In summary, research suggests that child-specific factors such as age, intellectual functioning, gender, and co-occurring disorders appear to influence a child with ASD’s severity rating.

Caregiver and Family Factors

Beyond child-specific factors, research suggests that parents’ perception of severity may not directly reflect core ASD symptoms, but rather the impact of a child’s difficulties on the family or subjective experiences (Liptak et al., 2008; Schieve, Blumberg, Rice, Visser, & Boyle, 2007). The impact of raising a child with ASD is influenced by a family’s support and resources (e.g., education, income, ability to navigate paperwork, transportation to and from therapies, access to Internet for information and local sources of support, or insurance; Bluth, Roberson, Billen, & Sams, 2013; Sawyer et al., 2010; Stuart & McGrew, 2009). For example, a comparison of families of children with ASD found that parents who had less than 12 years of education rated symptom severity as moderate or severe (Kogan et al., 2009). Given the high levels of stress experienced with raising a child with ASD, and the difficulties that many families experience accessing resources, it is understandable how such factors would influence how they rate the severity of their child’s ASD, regardless of the specific core symptoms that are present.

Mothers versus fathers

Even within the same family, mothers and fathers may perceive their own child’s ASD symptoms differently. Specifically, mothers tend to report more ASD symptoms than fathers (Matson, Hess, Kozlowskil, & Neal, 2011). This may be due to mothers assuming a primary caregiver role (Matson et al., 2011). In addition, although mothers and fathers mostly agree on observable behaviors, they may agree less on unobservable symptoms, like emotional competence and nonverbal comprehension (Matson et al., 2011).

Cultural perspectives of ASD

There is also evidence to suggest that sociocultural factors may further account for differences in parent perception of ASD symptom severity. First, ASD is often assessed by deviation from the norm, using a standardized assessment, which may be culturally insensitive (Norbury & Sparks, 2013). In some cases, an assessment tool may perceive symptomology as more severe than the families (Norbury & Sparks, 2013). Families who live in extreme poverty, where disease, housing, adequate nutrition, and family safety is of primary concern, may not view ASD symptoms as a priority (Norbury & Sparks, 2013). In addition, pragmatic language skills are susceptible to cultural variation and are difficult to measure in standardized ways (Norbury & Sparks, 2013). Although a standardized assessment may report symptomology as severe, the severity may be related to cultural differences, and the symptomology may be perceived as less severe by the family.

Second, families from different racial or ethnic backgrounds may experience varying levels of stress or different subjective experiences, and thus perceive ASD symptoms differently (Taylor Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). For example, non-White parents may perceive fewer negative impacts of having a child with an intellectual disability compared with White parents (Ferguson, 2001; Valentine, McDermott, & Anderson, 1998). Neely-Barnes and Marcenjo (2004) also found that different aspects of a child’s disability differentially affected African American, Hispanic, and White parents. Relatedly, Hispanic mothers also report fewer developmental concerns and ASD symptoms than White mothers, even when professionals perceive more severe symptoms and diagnostic justification (Blacher, Cohen, & Azad, 2014; Pereira Ponde & Rousseau, 2012). As noted, variables beyond core ASD symptoms may differentially affect families depending on racial or ethnic background, and result in differences in perceived severity of ASD.

Third, cultural differences in social expectations for behavior may also affect a parent’s perception of their child’s ASD symptoms. For example, in Asian cultures, variations in the meaning and amount of eye contact expected between children and adults may influence parent ratings of this ASD symptom on many screening tools (Dyches, Wilder, Algozzine, & Obiakor, 2007; Norbury & Sparks, 2013; Perepa, 2013; Wilder, Dyches, Obiakor, & Algozzine, 2004). In addition, Asian cultures have less verbal communication between children and adults, so this may affect parent ratings of language and communication developmental milestones in their children with ASD (Daley, 2004; Liu, 2005). This may also explain why some Asian parents find certain ASD characteristics, like echolalia or repetitive questioning, more challenging than parents from Western cultures (Dyches et al., 2007). In some African cultures, variations in the appropriateness of pointing may affect whether parents perceive nonverbal communication deficits in their children with ASD (Perepa, 2014).

In summary, many caregiver and family factors can influence a respondent’s rating of severity, and research suggests that the impact of a child’s disability on the family greatly influences a parent’s rating of ASD severity. Given the state of current research, it is unclear if the impact derives from the effect of core ASD symptoms in social communication and restricted and repetitive behaviors, co-occurring problems, or the respondent’s perception and expectations of child development. Severity ratings may also be related to the role of the respondent (e.g., a primary caregiver), perceived and experienced stress, and sociocultural expectations of social, cognitive, and physical behaviors. The differential effect of these parent and family factors, in contrast to child deficits and symptoms, are not well understood.

Current Study

Clearly, many different factors can influence parent ratings of ASD severity, yet parent report is an integral component in identification, diagnosis, and treatment choice. How a parent describes their child’s symptoms and the impact of their child’s difficulties on parental well-being and family functioning may influence decisions related to seeking initial help (i.e., diagnosis) as well as decisions about seeking treatment (Mire et al., 2015). Furthermore, the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; APA, 2013) requires that clinicians indicate a severity level for social communication and restrictive or repetitive behaviors that reflects the amount of support that the child with ASD requires. Such judgments about level of support are based—at least in part—on parent report. Given the wide-reaching influence of parent report, it is essential that clinicians and researchers better understand parental perceptions and identify potential factors that may affect the perception of severity. Thus, the purpose of this study was to investigate parent characteristics, particularly sociocultural factors, that may influence the severity rating of ASD, after controlling for child characteristics.

Method

Using the 2009–2010 National Survey of Children With Special Health Care Needs (NS-CSHCN), we examined 3,055 caregivers (hereon referred to as parents) who reported to have a child with ASD. This was a telephone survey led by the National Center for Health Statistics at the Centers for Disease Control and Prevention under the direction and sponsorship of the federal Maternal and Child Health Bureau. According to the sampling and survey administration procedures, telephone numbers were randomly called and parents were asked about the age and gender for all children in the household. This resulted in about 3,100 to 5,500 households with children below the age of 18 years contacted in each state. If parents answered “yes” to the question, “Do any children in the household have special health care needs?” they were then asked the NS-CSHCN interview survey questions. All parents answered questions about household demographics, race and ethnicity, and income. Interviews were conducted over the phone, and data were entirely parent report. The questionnaire was translated into Spanish, Mandarin, Cantonese, Vietnamese, and Korean, and bilingual professionals conducted the telephone interviews with non-English-speaking parents. Further details of the survey methodology are described elsewhere (Blumberg et al., 2003; Blumberg et al., 2008).

Measures

The child’s age was provided by the parent at the time of the interview. Parents were asked whether the child currently had a developmental delay or an intellectual disability. Parents were also asked about the presence of other emotional and behavioral conditions, including attention deficit hyperactivity disorder (ADHD), anxiety, depression, and general behavior problems. We coded the number of these co-occurring conditions, such that a child with ASD received a score from 0 (ASD with no additional conditions) to 4 (ASD with 4 additional emotional and behavioral conditions). Parents were asked to describe the child’s ASD as mild, moderate, or severe. This parent report of severity served as the outcome of interest for the current study.

The parent’s education level was the highest level of education in the household (i.e., less than high school, high school graduate, or more than high school). Income level was determined by the poverty level of the household in accordance with the Department of Health and Human Services guidelines. Families could range in income from 1 (at or below 50% poverty level) to 9 (above 400% poverty level). Parents were asked what language was primarily used in the household, and this variable was dummy coded, where 1 represented a family that primarily spoke a language other than English in the household. (See Tables 1 and 2 for child and family characteristics presented by severity level.)

Table 1.

Child Characteristics by Severity Level.

Severity Level	Age M (SD)	Gender		Race/ethnicity				Functioning		Co-occurring conditions
Severity Level	Age M (SD)	Male	Female	AA	Asian	Hispanic	White	DD	ID	ASD	ASD + 1	ASD + 2	ASD + 3	ASD + 4
Mild	9.80 (3.92)	80.2	19.8	6.6	3.9	11.0	79.8	81.3	77.0	40.3	28.1	19.1	9.4	3.2
Moderate	10.34 (4.02)	81.8	18.2	7.9	5.4	10.5	77.4	91.2	85.1	31.7	28.2	21.0	13.5	5.6
Severe	10.63 (3.92)	79.6	79.6	9.7	7.6	11.0	73.6	95.1	93.2	27.4	21.7	20.3	19.7	10.9

Note. Co-occurring conditions included attention deficit hyperactivity disorder, depression, anxiety, or behavior problems. Age in years = M (SD); AA = African American; DD = developmental delay; ID = intellectual disability; ASD = autism spectrum disorder; ELL = English Language Learner; HS = high school.

Table 2.

Caregiver Characteristics by Severity Level.

Severity Level	Respondent			Language		Education			Income (poverty level)
Severity Level	Mother	Father	Guardian	English	ELL	<HS	HS	>HS	≤50	50–100	100–150	150–200	200–300	300–400	>400
Mild	74.3	20.4	5.3	96.8	3.2	2.8	10.7	86.5	4.4	8.9	8.7	9.2	18.4	17.0	33.4
Moderate	74.8	17.6	7.5	97.5	2.5	4.6	14.7	80.7	5.4	11.3	13.2	10.1	17.2	15.7	27.1
Severe	73.2	19.6	7.3	94.1	5.9	7.3	13.7	79.1	8.8	17.8	15.3	9.1	15.0	8.4	25.6

Note. ELL = English Language Learner; HS = high school.

Analysis

We used hierarchical multiple regression to assess a two-tiered model of severity. The first model consisted of child-level variables: age, the presence of developmental delay, the presence of intellectual disability, and the number of co-occurring conditions. The second model consisted of family-level variables: education, income, and language spoken in the household. The outcome variable was the level of severity: mild, moderate, or severe.

Results

The children ranged in age from 2 to 17 years (M = 10.10, SD = 3.97), and were mostly male (80.7%). Many children also had an intellectual disability (60.2%) or a developmental delay (20.3%). In terms of severity, 52.3% of parents rated their child’s ASD symptoms as mild, 36% rated them as moderate, and 11.8% rated them as severe. The severity ratings did not differ by child gender, χ²(2) = 1.302, p = .522; parent gender, χ²(2) = 2.434, p = .296; whether the parent was born in the United States, mothers: χ²(2) = 2.448 (p = .294), fathers: χ²(2) = 3.953 (p = .139); or whether the child was born in the United States, χ²(2) = 5.897, p = .052.

The first block of child-level variables explained 4.8% of the variance in the parents’ rating of ASD severity, F(4, 691) = 8.699, p < .001. The second block of family-level variables explained an additional 1.4% of the variance, and this contribution was significant, F(7, 688) = 6.489, p < .001. In the full model, there were four significant predictors: the presence of developmental delay, the presence of intellectual disability, the number of co-occurring conditions, and whether a language other than English was primarily used in the household (See Table 3).

Table 3.

Hierarchical Regression Analysis Predicting Severity Ratings of ASD.

Variable	β	t	R	R ²	ΔR²
Step 1			.219	.048	.048
Child age	.036	.965
Developmental delay	.070	1.844
Intellectual disability	.139	3.657***
Co-occurring conditions	.119	3.171**
Step 2			.249	.062	.014
Child age	.045	1.201
Developmental delay	.086	2.274*
Intellectual disability	.138	3.631***
Co-occurring conditions	.107	2.826**
Education of household	.011	.261
Income of household	−.056	−1.334
Primary language not English	.104	2.726**

Note. ASD = autism spectrum disorder.

p < .05. **p < .01. ***p < .001.

Follow-Up Study: Is the Relationship Between Language and Severity Ratings Mediated by Sociocultural or Environmental Factors?

The presence of developmental delay, intellectual disability, and the number of co-occurring conditions justifiably influenced a parent’s evaluation of ASD severity. However, speaking a language other than English should not significantly influence ASD severity if the rating is purely measuring a child trait. In our sample, 101 (3.3%) parents spoke a primary language other than English in the household (hereon referred to as English Language Learners [ELL]). Our first study found that this was predictive of more severe ratings of ASD, regardless of other child and family characteristics. To tease apart what cultural or sociocultural factors could be confounded with language, we explored potential mediating variables.

Significant Correlations With Speaking a Language Other Than English

ELL parents were more likely to have younger children with ASD, t(3053) = 6.179, p < .001; only high school or less than high school education, χ²(2) = 93.342, p < .001; and a lower household income, t(3053) = 8.537, p < .001. ELL parents also experienced different financial or relationship stressors. They were more likely to have their child uninsured, χ²(1) = 6.45, p = .011; to have cut back or stopped working because of their child, χ²(1) = 13.797, p < .001; and to have had someone in the household receive welfare within the last year, χ²(1) = 16.89, p < .001. ELL parents were more likely to be cohabiting and unmarried, χ²(3) = 18.35, p < .001, or separated and never married, χ²(4) = 20.374, p = .001. Finally, ELL parents were significantly less likely to have access to the Internet at home, χ²(1) = 14.25, p < .001, and more likely to report needing help arranging or coordinating care for their child, χ²(1) = 6.586, p = .010.

ELL parents also experienced more challenges around interactions with their child’s doctor. They were more likely to report that doctors rarely listened to them, χ²(1) = 10.510, p = .001; were insensitive to their family’s values and customs, χ²(1) = 13.554, p < .001; did not spend enough time with them, χ²(1) = 18.468, p < .001; and did not discuss a range of options for their child’s health care, χ²(1) = 6.376, p = .012.

Correlations With Severity Ratings

Next, we evaluated the relationship between these social-cultural factors and the severity rating of ASD. This eliminated insurance, χ²(2) = 2.298, p = .317; welfare, χ²(2) = 3.817, p = .148; and lack of Internet, χ²(2) = 1.349, p = .509, as potential mediators. However, several other groups of mediators emerged. The only child-level variable related to severity ratings was age, F(2, 3034) = 9.738, p < .001, where older children were rated as more severe than younger children. The average age of a child with mild ASD was 9.8 years (SD = 3.92), moderate ASD was 10.34 years (SD = 4.02), and severe ASD was 10.63 years (SD = 3.92). Financial family variables (i.e., education, income, and work impact) explained 3% of the variance in severity ratings, F(3, 3011) = 30.796, p < .001. Partner support in the home (i.e., need for coordination help, cohabitating, and marital status) explained 1.4% of unique variance in severity ratings, F(3, 2845) = 13.746, p < .001, but only need for coordination help was an independent predictor. Doctor support (i.e., listening, cultural sensitivity, time spent, and providing a range of health options) explained 1.2% of the variance in severity ratings, F(4, 2987) = 9.417, p < .001, and both listening and cultural sensitivity were independent predictors.

Mediation Analyses

Sobel tests suggested that the relationship between parent language and ASD severity was partially mediated by child age (z′ = 3.67, p < .001), fully mediated by education (z′ = 4.23, p < .001), income (z′ = 5.42, p < .001), work impact (z′ = 3.53, p < .001), and need for coordination help (z′ = 2.48, p < .05), and not mediated by cohabiting (z′ = −0.039, p = .696) or marital status (z′ = 1.83, p = .068). Doctor support fully mediated the relationship between parent language and severity through poor listening (z′ = 2.79, p < .01), insensitivity to culture (z′ = 3.14, p < .01), failure to spend enough time with patients (z′ = 2.28, p < .05), and failure to provide a range of treatment options (z′ = 2.09, p < .05).

Multiple Mediation Analysis

We performed a multiple mediation analysis with parent language predicting severity, mediated by the nine significant variables: child age, parent education level, household income, work impact, coordination help, doctor’s poor listening, doctor’s insensitivity, doctor’s failure to spend time, and doctor’s failure to provide options. The multiple mediation analysis showed that the relationship between parent language and ASD severity was fully mediated by these other factors. In addition to the child’s age, the family’s education, income, work changes, need for coordination help, and feeling that their doctor’s was culturally insensitive were significant mediators of the relationship between language and severity (See Figure 1).

Figure 1.

Multiple mediation model with standardized regression coefficients, which can be interpreted as correlations.

Discussion

We found that child characteristics influenced parental ratings of ASD severity, which suggests that parent concepts of severity may be influenced by the impact of conditions on the child’s intellectual, behavioral, socioemotional, and adaptive functioning. Developmental delays, intellectual disabilities, and co-occurring conditions may be correlated to the severity of ASD symptoms, or they may result in other challenges that are perceived by parents as part of their child’s ASD diagnosis. Whether these factors compound core ASD symptoms directly, mask developmental skills, or influence a respondent’s perception remains unclear. Although gender did not relate to severity ratings, age did affect severity ratings, with older children rated as more severe. However, it is worth noting that the practical significance of this difference was small; on average, there was less than a year of age difference between the mild and severe groups. This contradicts some research suggesting that younger children with ASD may be rated as more severe (Esbensen et al., 2009). Perception of increased severity with age is potentially a result of the increase in co-occurring emotional and behavioral conditions, physical strength available to do damage or destruction, or responsibilities and expectations from adults in the environment. Furthermore, ELL parents were more likely to rate their older child’s ASD as severe, as opposed to mild or moderate. It is plausible that this difference reflects different expectations across ELL and non-ELL parents in terms of maturation and development across social, behavioral, and intellectual functioning.

The most important family-level predictor of ASD severity was not income or education level, or even whether parents were born in the United States, but language used in the household. When the primary language in a household was a language other than English, parents were more likely to rate their child’s ASD as severe. The theory of fundamental causes, developed by Link and Phelan in 1995, explains why the association between socioeconomic status (SES) and broader social conditions are the major cause of health inequalities (Phelan, Link, & Tehranifar, 2010). In this theory, multiple societal factors, such as money, knowledge, power, prestige, and beneficial social conditions, can be used to minimize consequences of illness. Those who have access to these resources over time have more favorable outcomes (Phelan et al., 2010). In a study that applied fundamental cause theory to ASD, social conditions affected access to services and treatments. In this study, researchers wanted to assess Hispanic children’s access to publicly funded services, through a Medicaid waiver (Magaña, Lopez, Aguinaga, & Morton, 2013). Services are difficult to obtain, as the child must meet requirements for Social Security Income, be evaluated and diagnosed by a clinician, receive their diagnosis before the age of eight, and the family must locate a qualified provider (Magaña et al., 2013). These requirements pose several challenges to low SES and racial/ethnic minorities. First, previous studies have demonstrated that low SES and racial/ethnic minorities are diagnosed at a later age (Mandell et al., 2009; Magaña et al., 2013). Second, if the child is an ELL, it may be difficult to locate a qualified bilingual provider (Magaña et al., 2013) or to locate resources and information, due to information being provided primarily in English. The compilation of the above-mentioned social causes limited Hispanic parents’ ability to access flexible resources. Due to these challenges, there may be more limited access to interventions, which could minimize the impact of intensive treatments, thus maintaining higher ASD severity of symptoms in this population over time.

Overall, we found three areas where ELL parents were lacking in support that were also related to severity ratings. First, the lack of financial support related to income, education, and work fully explained the relationship between language and more severe ASD ratings. Second, the need for help in coordinating and planning services fully explained the relationship between language and more severe ASD ratings. Third, the quality of doctor interactions, including being culturally insensitive, fully explained the relationship between language and more severe ASD ratings. Cultural sensitivity can be a challenge for primary care physicians who are trying to accommodate families that are using nontraditional treatments or have nontraditional beliefs about symptoms, treatments, and outcomes (Mandell & Novak, 2005).

Implications and Future Directions

ELL parents reported that they were lacking in support in many core areas, including financial, logistical, and professional. This research argues for greater assistance for families that have older children, less education, lower incomes, made work changes, or sought help in the mere planning and coordination of their child’s care. The additional challenges on these families may be exacerbating the ASD symptoms over time, with fewer options for services, or lower quality care. Alternatively, these additional challenges may cause a high level of strain on families to the extent that it changes parents’ perception of their child’s ASD symptoms. In this case, a child’s ASD may be average in clinical presentation; however, ELL parents may be experiencing sociocultural challenges (i.e., limited access to necessary supports) that make caring for a child with ASD more demanding and result in a greater impact on general family well-being. Therefore, this research highlights the need for longitudinal studies on the perception of ASD that account for child and parent characteristics over time.

Finally, these studies highlight the need for primary care providers to develop meaningful, supportive relationships with ELL parents. Providing higher quality interaction may lead to better services and care for the child, which could decrease clinically measured ASD severity. In addition, this higher quality interaction may increase the parent’s level of perceived support, alleviating parental stress and indirectly affecting the perceived severity of ASD.

Limitations

This research used data from a large, nationally representative survey, which investigated a variety of parents of children with special needs. Unfortunately, this rich data set was collected from 2009 to 2010, making this survey several years old and potentially outdated. However, we suspect that the information about current parental challenges and the relationships among variables are still useful and relevant to families, clinicians, and researchers. In addition, the prevalence rates in this data set generally reflect the current state of affairs in the United States in regard to the proportions of ASD by ethnicity and language (Durkin et al., 2017). A second limitation of this research is that the data were entirely parent report, and there was no clinical verification of any parent responses, including child diagnosis. With the current methodology, we were unable to confirm diagnosis of ASD or to test if parents falsely reported a diagnosis of ASD at different rates across demographic groups. A final limitation to this research was the cross-sectional nature of the survey, which makes drawing conclusions about progression, timing, and direction of influence difficult to verify. The strengths of the current research include the large and representative sample size for this population, a broad range of child, parent, family, and sociocultural characteristics, and the use of multiple statistical methods.

This study corroborates evidence showing that ELL parents of children with ASD experience unmet needs and perceive or witness more severe ASD symptoms in their children (Magaña et al., 2013; Magaña, Parish, & Son, 2016; Mandell et al., 2009). It is important to note that the direction of influence, or order of events, cannot be definitively evaluated using these data. As these variables were recorded simultaneously, it may be the case that ELL parents experience more challenges to funding and navigating supports for their child and family, and because of these barriers to treatment, their child with ASD may develop more severe symptoms and presentation, thus explaining parent’s perception of more severe ASD (i.e., culture → symptoms → perception). Alternatively, it may be the case that ELL parents who have a more severe child with ASD make more sacrifices at work and school, leaving them with lower incomes and feeling that their doctors are less helpful and less sensitive (i.e., symptoms → culture → perceptions). Finally, it may be the case that ELL parents hold higher expectations of their child’s skills and behaviors than native English-speaking parents, which would cause them to rate their child’s ASD as more severe and to feel helpless in controlling or modifying their child’s behavior, and lead to a self-fulfilling prophecy (i.e., culture → perception → symptoms).

Conclusion

Understanding parent perception of ASD symptom severity is important because of the reliance on parent ratings in diagnosis as well as the influence of parent perception on treatment and decision making. However, parent perception of ASD severity appears to be impacted, not only by child-specific characteristics but also by sociocultural factors. Future research should aim to determine the extent to which these and other sociocultural factors may be affecting parent ratings of ASD severity. Furthermore, when asking teachers, parents, caregivers, or clinicians to evaluate the severity of a child’s ASD symptoms, researchers and clinicians should consider how multiple factors may influence perception of ASD severity.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

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