Longitudinal study of perceived negative impact in African American and Caucasian mothers of children with autism spectrum disorder

Abstract

The purpose of this study was to examine the stability of mothers’ perceptions of the negative impact of having a child with ASD in a sample of African American and Caucasian families as their children transitioned to early adolescence. Participants were mothers and children participating in an ongoing longitudinal study of children referred for diagnosis of ASD at age two. Analyses included data from two time points, when child participants were approximately 9 and 14 years old. Linear mixed model analyses were used to examine the relationship between the primary outcome variable, mothers’ perceived negative impact across time, and hypothesized predictors. Negative impact increased significantly from late childhood to into adolescence. However, African American mothers with lower education reported significantly lower levels of perceived negative impact at both time points. Findings show that for some families, the transition to adolescence is a period in which mothers experience increased amounts of negative impact and highlight the importance of examining the influence of socioeconomic variables. Furthermore, data suggest that there may be cultural differences mediating the relationship between maternal education, ethnicity, and perceived negative impact. Implications for the importance of including families from varying levels of socioeconomic status in ASD research are discussed.

Keywords

perceived negative impact family impact African American adolescence socioeconomic status

Introduction

Although increasing numbers of studies have examined the family impact of a child with autism spectrum disorder (ASD), most research has had limited inclusion of families from diverse socioeconomic backgrounds (Barker et al., 2011; Lounds et al., 2007), and few have focused on the transition from childhood to adolescence and early adulthood from a longitudinal perspective. An important construct within this literature is parental well-being, which can be thought of as the aggregate of many interrelated factors, including stress, depressive symptoms, health, life satisfaction, and caregiver burden (Blacher and McIntyre, 2006). Closely related to caregiver burden, perceived negative impact is conceptualized as the degree to which a caregiver reports negative experiences (financial, social, or emotional) perceived as a result of having a child with a disability (Messer et al., 1996). This is an important component of parental well-being, but less frequently studied (Bishop et al., 2007).

In considering the long-term impact of having a child with ASD, cross-sectional studies from childhood to early adulthood have found that parents of children with ASD have lower levels of well-being than parents of children with other disorders (Abbeduto et al.y, 2004; Montes and Halternam, 2007; Totsika et al., 2011). However, longitudinal studies suggest that, despite overall lower levels, many mothers of children with ASD show increased well-being over time. Lounds et al. (2007) found improvement in maternal well-being across a 3-year transition from adolescence to early adulthood. Using the same sample, Barker et al. (2011) extended the analyses across a 10-year period and found stable maternal trajectories of depressive symptoms and decreasing trajectories of anxiety. The association between child behavior problems and maternal depressive symptoms was higher for younger mothers than it was for older mothers. If one assumes that the younger mothers in this sample were mothers of adolescent, rather than adult-aged children, these findings may suggest that adolescence is a period of risk for lower levels of maternal well-being. Although there is limited direct evidence in the ASD field that the transition to adolescence is such a period of risk, studies in the broader field of development suggest this is a particular period of decrease in parental well-being (Putnick et al., 2010). Although these studies, particularly those within ASD literature, are some of the first to examine maternal well-being longitudinally during a period of adolescence, they are still limited in their representation of families from diverse racial/ethnic or socioeconomic backgrounds.

One particular ethnic group that has not been well-researched within the field of autism is African Americans. No differences have been found in the phenotypic presentation of core features of ASD between African American and Caucasian children (Cuccaro et al., 2007), but differences have been reported in the number of children identified with the disorder. Two national surveys found the prevalence of ASD higher in Caucasian children than African American children (Centers for Disease Control and Prevention, 2009; Kogan et al., 2007). It is unclear, however, whether the difference is reflective of a true difference in prevalence or a result of disparities in access to diagnostic services. In a study identifying children as meeting surveillance criteria for ASD, it was found that African American children were less likely than Caucasian children to have documented community ASD diagnoses (Mandell et al., 2009). For those children who did have a documented ASD diagnosis, many did not receive that diagnosis until they were school-aged, with the age of first diagnosis significantly later for African American than Caucasian children (Liptak et al., 2008; Mandell et al., 2002).

Factors contributing to diagnostic disparities include limited access to experienced ASD service providers (Ruble et al., 2005) and high costs of diagnostic and treatment services (Flanders et al., 2007). Cultural background may also influence a parents’ interpretation of the child’s symptoms, the manner in which a parent responds to such symptoms, and the manner in which a parent communicates such symptoms to a professional (Mandell and Novak, 2005). Such findings highlight the importance of including more African American families in ASD research in determining how such disparities can be addressed.

Bishop et al. (2007) conducted one of the first cross-sectional studies to examine parental perceptions of having a child with ASD in a sample with a representative number of African American parents. Predictors of perceived negative impact were examined in families with 9-year-olds with ASD. African American mothers reported significantly lower levels of perceived negative impact than Caucasian mothers. For both ethnic groups, lower child adaptive behavior, more restricted and repetitive behaviors, fewer children in the family, and lower levels of social support were all significant predictors of higher perceived negative impact, indicating that variables at the child and family level affect parents’ perceptions of caring for a child with ASD.

The present study builds on the findings of Bishop et al. (2007) by measuring perceived negative impact at a second time point, approximately 5 years later. A second time point affords the opportunity to examine in greater detail the influence of socioeconomic factors on the ways in which families are affected by having a child with ASD across the period of early adolescence. Our research questions were the following: 1) How do maternal perceptions of negative impact change over time and what child and maternal characteristics predict such change, 2) Does the difference in perceived negative impact between African American and Caucasian mothers (Bishop et al., 2007) persist across time and, if so, what factors contribute to such a difference?

Given findings that families may experience increases in stress during the onset of adolescence (Putnick et al., 2010), we predicted that the mothers in our sample would experience an increase in negative impact as their children transitioned from late childhood into adolescence. Following Bishop et al. (2007), we predicted that child impairment (measured by adaptive behavior and a history of restricted and repetitive behaviors), number of children in the family, and social support would continue to be significant predictors of perceived negative impact. We also added three additional variables of interest that included a measure of child behavior problems, pubertal stage, and amount of individual therapy received by the child. We predicted that reports of greater behavior problems, advanced pubertal stage, and more hours of individual therapy (indicating a greater perception of the need for changed behavior) would contribute to increased negative impact.

Bishop and colleagues (2007) found that, even though the African American children with ASD were slightly more impaired than the Caucasian children, African American mothers perceived their children to have less negative impact on their families’ lives. While we expected negative impact to increase for both African American and Caucasian mothers as children became adolescents, we predicted that African American mothers would continue to report lower levels. However, we hypothesized that ethnicity would interact with child and mother characteristics, such that higher levels of child impairment would have a greater effect on Caucasian mothers’ reports of negative impact than African American mothers’.

Methods

Participants

Participants were a subset of families of the ongoing longitudinal Early Diagnosis Study following children referred for possible diagnosis of ASD at age 2 years (See Lord et al., 2006). Families were recruited through the state-funded TEACCH program in North Carolina and the Developmental Disorders Clinic at the University of Chicago. Those eligible for the present analyses included families with a child diagnosed with autism or pervasive developmental disorder - not otherwise specified (PDD-NOS) who had completed all measures for at least one of the two time points (Year 9 and/or Year 14 of age). For purposes of comparison, only families in which the mother was the primary caregiver and families whose reported ethnicity was African American or Caucasian were included. Thirty African American and 80 Caucasian families were included in the analysis at Year 9 and 17 African American and 68 Caucasian families at Year 14. Of all the demographic variables, only ethnicity was a marginally significant predictor of attrition. Families who did not participate at the second time point were more likely to be African American (p = .059).

Procedures and measures

Data were collected through face-to-face assessments and interviews at Year 9 and through questionnaires and phone interviews at Year 14. Perceived negative impact was assessed with the Child and Adolescent Impact Assessment (CAIA; Messer et al., 1996). The CAIA is a 32-item semi-structured interview assessing the impact of a child’s symptoms on the family across multiple domains, including finances, relationships, activities, and family well-being. For each item, clinicians assign ratings of zero to three based on the caregiver’s open-ended response. Scores of zero indicate no reported negative impact and scores of three indicate marked negative impact. Clinicians were trained to administer and score the CAIA in a standardized manner. Each clinician was required to achieve exact agreement with a reliable coder on 80% of codes for three consecutive interviews before administering the measure independently. For the purposes of this study, a negative impact total was computed by summing the scores from each negative impact item on the CAIA. Possible total scores ranged from 0 to 67, with higher scores indicating higher levels of impact. The CAIA includes a question asking whether parents’ support networks provide some assistance, limited assistance, or no assistance. This question was treated as a dichotomous variable of mothers who reported limited to no assistance versus those who reported some assistance (see Bishop et al., 2007 for more details).

Child participants were evaluated for ASD at Year 9 with cognitive tests, the Autism Diagnostic Interview-Revised (ADI-R; Le Couteur et al., 2003), the Autism Diagnostic Observation Schedule (ADOS; Lord et al., 2000), and a clinician’s best estimate diagnosis (see Lord, et al., 2006). Families were included in the present study if the child received a diagnosis of any ASD at this assessment. Cognitive ability was assessed using the Wechsler Intelligence Scale for Children 3^rd Edition (WISC-III; Wechsler, 1991), the Differential Ability Scale (DAS; Elliott, 1990), or the Mullen Scales of Early Learning (MSEL; Mullen, 1995).

At both Year 9 and Year 14, adaptive behavior composite scores were computed from the Vineland Adaptive Behavior Scales-II (VABS-II; Sparrow et al., 2005), behavior problems were assessed using the Aberrant Behavior Checklist (ABC; Aman et al., 1985) and pubertal stage was assessed using the Pubertal Development Scale (PDS; Petersen, Crockett, Richards, and Boxer, 1988). The number of individual hours of therapy received from age 2 years to 14 years was collected through a Treatment Log in which parents were asked to report the type, frequency, and length of any individual therapy children received outside of school.

At Year 14, mothers also completed the Positive Affect Scale (Bengston and Schrader, 1982) and the Psychological Well-Being Scale (Ryff, 1989). The Positive Affect Scale is a 15-item measure assessing the quality of the relationship between a parent and child. The first five items assess the positive affect that the parent perceives that the child feels toward him/herself, while the second five assess the parent’s feelings toward the child. An additional five items assess the parent’s perception of the overall quality of the relationship with the child. For the purposes of this study, a positive affect total was computed by summing the scores from each item; higher total scores indicated higher positive affect between parent and child. The Psychological Well-Being Scale is a 54-item self-report measure assessing dimensions of autonomy, environmental mastery, personal growth, positive relations with others, purpose in life, and self-acceptance in adults. Items are rated on a scale of one to six and responses are totaled for each of the six categories; higher scores indicated greater levels of well-being. Scores from each dimension were combined to form an overall well-being total.

Data analysis

A linear mixed model analysis was chosen to examine the relationship between the primary outcome variable, perceived negative impact, and the hypothesized predictors. This model was chosen for its ability to model repeated measures data but also, more importantly, its ability to handle missing data. The SPSS 19 MIXED procedure was used to employ the Top-Down strategy for model building, in which the maximum number of mixed effects are included and then reduced until the best model of statistical and theoretical fit is achieved, as indicated by a comparison of likelihood ratio tests (West et al., 2007). The initial model included time as a dichotomous fixed effect representing data collected for Year 9 and Year 14. All maternal and child variables, including interactions between ethnicity and each independent variable, were also included as fixed effects. A random effect associated with the intercept for each family was also included. Post hoc comparisons of estimated marginal means (EM) were used to compare the effect of each categorical variable on total negative impact while controlling for all other variables in the model. Bonferroni corrections were used to adjust for multiple comparisons.

Because data on maternal well-being and positive affect were available at Year 14, a post hoc exploratory analysis was conducted to examine whether the difference in perceived negative impact across ethnicity would be partially explained by these variables at this time point. A univariate analysis of variance (SPSS 19) was used to examine whether African American mothers would report higher levels of well-being and positive affect, and if so, whether interactions between ethnicity and these variables would predict perceived negative impact.

Results

Preliminary analyses

Preliminary analyses were conducted to compare participant characteristics by sample (African American vs. Caucasian) and year (Year 9 vs. Year 14) (Table 1). Maternal education differed significantly between Caucasian and African American mothers. Of the Caucasian mothers, 63% (Year 9) and 66% (Year 14) had college degrees or higher compared with 20% and 33% of the African American mothers, respectively p < .001; p < .05). Of the Caucasian mothers 89% and 92%, respectively, were married or living with their partner compared with 66% and 69% of the African American mothers (p < .01; p < .05). The samples also differed significantly by site of evaluation. Thirty-nine percent (Year 1) and 35% (Year 2) of the Caucasian families were recruited from the North Carolina site compared with 87% and 76% of the African American families, respectively (p < .001; p < .01). At Year 14, African American mothers (M = 39.44, SD = 6.46) were significantly younger than Caucasian mothers (M = 44.42, SD = 4.84; p < .05).

Table 1.

Participant characteristics by year and ethnicity

	Year 9		Year 14
	Caucasian	African American	Caucasian	African American
Family/mother characteristics
Age (years)	38.90 (5.26)	36.00 (5.35)	44.42 (4.84)	39.44 (6.46)
Education (N = 2 missing)
Four year college degree or more	50	6	44	5
Some college or less	30	24	23	11
Marital status (N = 5 missing)
Married or living with partner	71	20	59	11
Single, widowed	9	10	5	5
Number of children	2.68 (1.13)	2.53 (0.82)	2.63 (1.11)	2.47 (0.73)
Site
North Carolina	31	26	24	13
Chicago	49	4	44	4
Psychological well-being	−	−	153.44 (15.80)	145.56 (29.02)
Positive affect	−	−	66.18 (11.50)	73.00 (10.38)
Child characteristics
Age (years)	8.96 (1.28)	10.12 (1.06)	14.13 (0.21)	14.21 (0.26)
Gender
Male	72	26	62	15
Female	8	4	6	2
Diagnosis
Autism	55	25	50	11
PDD-NOS	25	5	18	6
Nonverbal IQ	67.24 (32.82)	49.90 (26.15)	66.76 (31.93)	56.94 (34.24)
VABS adaptive behavior composite	50.10 (24.11)	38.31 (18.06)	52.09 (22.87)	42.06 (29.95)
ABC total behavior problems	41.18 (28.46)	51.30 (35.45)	36.80 (27.46)	46.69 (39.68)
Pubertal Stage	5.6 (1.35)	6.56 (3.05)	12.37 (3.50)	13.5 (2.88)
Hours of individual therapy	2217 (2408)	361 (276)	2332 (2,468)	374 (299)

Table 2.

Linear mixed model: estimates of fixed effects on perceived negative impact at years 9 and 14.

Parameter	Estimate	SE	t
Intercept	21.81	3.23	6.75***
Time	−4.67	1.21	−3.86***
Ethnicity	−0.24	3.11	−0.07
Maternal education	−12.43	3.24	−3.84***
Recent diagnosis	4.99	1.85	2.70**
Social support	5.11	1.53	3.35**
Nonverbal IQ	0.11	0.03	3.12**
Adaptive behavior	−0.13	0.04	−3.04**
Behavior problems	0.10	0.03	3.55**
Hours of individual treatment	0.001	0.0003	2.08*
Ethnicity × maternal education	11.68	3.63	3.22**

p < .05. **p < .01. ***p < .00.

Average pubertal stage for all children was between early pubertal and midpubertal stages at Year 9 (M = 5.79, SD = 1.8) and postpubertal at Year 14 (M = 12.59, SD = 3.39, p < .001). African American children had lower nonverbal IQs (p < .05) and lower adaptive behavior composite scores (p < .05) at both time points, although these differences were significant only at Year 9.

The number of hours of individual treatment each child had received since being diagnosed at age 2 also differed significantly between the two samples at both time points. By age 9, Caucasian children had received on average 1856 hours more of individual therapies from the time they were diagnosed than had the African American children (p < .001), and by Year 14 they had received 1958 more hours of individual therapy (p < .01).

Linear mixed model analysis

Examining the relationship between hypothesized predictors of perceived negative impact, the model of best fit included time, ethnicity, maternal education, social support, child diagnosis, nonverbal IQ, adaptive behavior, behavior problems, and the interaction between ethnicity and maternal education.

There was a main effect for time; negative impact increased significantly from Year 9 (EM = 19.88, SD = 1.12) to Year 14 (EM = 24.54, SD = 1.32; p < 0.001), with both African American and Caucasian mothers reporting higher levels of negative impact as their child transitioned to adolescence (Figure 1).

Figure 1.

Negative impact at years 9 and 14.

Interactions between ethnicity and all variables were non-significant with the exception of the interaction between ethnicity and maternal education. The effects of ethnicity and maternal education were driven by an interaction between the two variables (Figure 2). At both time points, African American mothers with less than 4 years of college (Year 9: EM = 10.86, SD = 1.78; Year 14: EM = 15.54, SD = 1.98) reported significantly lower levels of negative impact than African American mothers with 4 years of college or more (Year 9: EM = 23.29, SD = 2.94; Year 14: EM = 27.97, SD = 2.98) and than all Caucasian mothers regardless of education (some college or less: Year 9: EM = 22.30, SD = 1.48; Year 14: EM = 26.98, SD = 1.72; 4 years of college or more: Year 9: EM = 23.05, SD = 1.25; Year 14: EM = 27.73, SD = 1.32; p < .001) .

Figure 2.

Interaction between maternal education and ethnicity.

Several variables were significant predictors of perceived negative impact across time and ethnicity. Mothers who received little to no social support reported higher levels of negative impact (EM = 24.77, SD = 1.46) than mothers who received some social support (EM = 19.66, SD = 1.15; p < 0.01). Among the child characteristics, child diagnosis, nonverbal IQ, adaptive behavior, behavior problems, and hours of individual treatment were all significant predictors of negative impact across time and ethnicity. Negative impact was significantly higher when children had a diagnosis of autism rather than PDD-NOS (p < .01) higher nonverbal IQ scores (p < .01), lower adaptive behavior (p < .01), higher levels of behavior problems (p < .01), and had received more hours of individual treatment (p < .05).

Post hoc exploratory analysis

To investigate possible explanations for the persistent difference in negative impact across time, we explored whether, at Year 14, African American mothers would report higher levels of well-being and more positive affect regarding their relationship with their child with ASD and whether levels of well-being and positive affect would predict negative impact. Comparisons yielded no significant differences between African American and Caucasian mothers on these measures. African American mothers’ reports of neither well-being (t = 1.05, p = 0.310) nor positive affect (t = −1.93, p = .071) were significantly different from those of Caucasian mothers. Interactions between well-being and ethnicity or between positive affect and ethnicity were not significant.

Discussion

The present study is one of the first to present longitudinal data across the transition from late childhood to adolescence in a sample of African American and Caucasian families. Perceived negative impact in African American and Caucasian mothers increased as children with ASD transitioned into adolescence. Both child and maternal variables influenced perceived negative impact, with an interesting interaction between maternal ethnicity and education status.

African American mothers with lower levels of education reported significantly lower levels of negative impact than African American mothers with more education and Caucasian mothers for all levels of education. In mothers of children with ASD, more years of education could be associated with understanding the complexity of the disorder and understanding that many children on the spectrum face difficulties across the lifespan. Mothers with higher education may also have higher aspirations for their child’s achievements, and consequently higher levels of disappointment in the limitations of their child. Another interpretation is to view maternal education as a proxy of socioeconomic status. Mothers with lower levels of SES may experience many daily stressors; raising a child with ASD may not contribute above and beyond other stressors (limited income, inadequate resources, etc.) affecting family life.

One possibility is that some of the difference in perceived negative impact could be accounted for by differences in African American and Caucasian mothers’ reports of well-being and positive affect with their child. We found, however, that African American mothers’ reports of well-being and positive affect did not differ from their Caucasian counterparts, nor were these variables related to perceived negative impact. Our data suggest that positive well-being and relationship quality are distinct constructs from the domain of perceived negative impact, a finding that has been documented in other studies (Lounds, et al., 2007; Orsmond et al., 2006).

Another possibility is that there are cultural differences, mediated by level of education, between African Americans and Caucasians that are unique to the construct of perceived negative impact. Historically, African American communities have strong kinship networks that value interdependence, religiosity, and spirituality (Brooks et al., 2004; Taylor et al., 1996) which may protect against experience of negative impact. Furthermore, it has been found that African Americans with lower education adhere more strongly to traditional African American beliefs regarding the role of caregiving (Dilworth-Anderson et al., 2005; Rozario and DeRienzis, 2008). This may have been the case for the African American mothers with lower education in our study who may perceive caring for a child with autism as less of a burden and more of an accepted familial obligation.

A number of variables at the child level emerged as significant predictors of perceived negative impact across ethnicity, and in childhood and adolescence. As expected, mothers reported higher negative impact when their child had higher amounts of behavior problems and lower levels of adaptive behavior, supporting the well-documented influence of behavior problems and level of functioning on broader reports of maternal well-being (Orsmond et al., 2006; Lounds et al., 2007; Shattuck et al., 2007). Contrary to our expectations, mothers also reported greater negative impact when their children had higher nonverbal IQs. Children with higher cognitive ability may be more susceptible to symptoms of social withdrawal (Anderson et al., 2011). An increase in social withdrawal during adolescence may place particular strain on family relationships and a parent’s perception of negative impact. In contrast to Bishop et al. (2007)’s analysis of our sample at Year 9, at Year 14 a history of restricted and repetitive behaviors was not predictive of negative impact. Because children were not reevaluated for features of ASD at Year 14, changes in children’s patterns of restricted and repetitive behaviors during adolescence were not documented.

One of the most striking findings from the study was that African American children received many fewer hours of individual treatment than the Caucasian children. One could speculate that, given the disparities in age of diagnosis across ethnicities in other studies (Mandell et al. 2002), African American children might have received fewer hours of treatment because they had not held diagnoses as long, but in the present sample, all children received an ASD diagnosis by 2 years of age.

There are many potential reasons behind the treatment disparity identified in this sample. Negative impact reported by parents is associated with higher rates of service use (Farmer et al., 1997; Messer, et al., 1996) and indeed, in our sample, more individual treatment hours were associated with higher levels of perceived negative impact. It could be that families that perceive children as a greater burden advocate more for services, or that, having fought for services, some families are more aware of their children’s negative impact on their lives. It may also be that parents who perceive lower levels of negative impact of caring for their child do not feel as great a need to access services.

Alternatively, lower amounts of individual treatment in the African American families may be a reflection of the historical context of mental health care. The underutilization of mental health services in African American families has been well documented in the United States (US Department of Health and Human Services, 2001) with suggestions that African American mothers of children with disabilities may be more at risk (Magaña and Smith, 2008). Numerous variables, including economic disparities, stigma, lack of knowledge, lack of trust, and lack of cultural understanding may all affect rates of service utilization in African American communities (Thurston and Phares, 2008; US Department of Health and Human Services, 2001). Inferring the reasons for such a significant disparity in treatment hours between African American and Caucasian families is beyond the scope of the presented data. However, this finding highlights the need for more research examining disparities in autism resources.

The present study is not without limitations. Although our sample of African American families is larger than what is usually reported in autism literature, the number of African American families participating was still smaller than that of Caucasian families. This discrepancy was a result of a smaller number of African American families at the start of the study, which was exacerbated by higher attrition rates within the African American sample. It is also important to note that the majority of African American families participating in the study were from rural regions of North Carolina, where cultural values may differ from those that are more urban. The experiences of one small subgroup may not generalize to African Americans in other regions. The use of a linear mixed model to examine effects of race/ethnicity reduced the impact of missing data, but it is recognized that the current study may be somewhat underpowered. Given the novelty of the research questions addressed, and the need for more research examining racial/ethnic and socioeconomic differences, the findings are important but should be considered exploratory.

Despite these limitations, the present study contributes several new and important findings in a sample of families that have been traditionally underserved in the ASD literature. In contrast to others’ findings that maternal well-being improved during adolescence and early adulthood (Barker et al., 2011; Lounds et al., 2007), we found that perceived negative impact increased from late childhood to adolescence. Our results suggest there may be something unique in the transition to adolescence that has particular negative impact on mothers’ perception of family impact, stressing the importance of supporting families as their children approach adolescence. This study also documented a persistent difference over time in reports of negative impact, although well-being and positive affect did not differ, between African American and Caucasian mothers that was accounted for by differences in education. Finally, this study revealed a gross disparity in the amount of individual treatment hours received between the African American and Caucasian children that remained stable over time. These findings speak to the importance of continued examination of treatment disparities in African American and other racial/ethnic minority populations. Specific methods (e.g. providing transportation, childcare, or low-cost services, incentives, or resource supports) have been used to recruit such populations in broader psychotherapeutic research and are now just emerging in ASD studies (Hilton et al., 2010; Snells-John et al., 2004). The need for research examining the effectiveness of such strategies in intervention research is paramount.

Whether differences in perceived negative impact and disparities in services can be attributed to child and mother characteristics, socioeconomic status, cultural values, or, more likely, interactions among these variables, differences in families’ experiences have important implications for the development of support services. Our field must strive for greater inclusion of underserved families in research on ASD, particularly ethnic minorities and those of lower socioeconomic status. Such research will contribute to our understanding of the impact of having a child with ASD over the lifetime and aid in implementation of diagnostic and treatment resources for families from diverse backgrounds.

Footnotes

Acknowledgements

We thank the families who participated in the Early Diagnosis Study, as well as Somer Bishop, Deborah Anderson, Shanping Qiu, Alexa Dent, and Christina Popa for their guidance and assistance in preparing this article.

Funding

This word was supported by the National Institutes of Mental Health [grant number R01 MH081873] awarded to CL.

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