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. Author manuscript; available in PMC: 2025 Sep 19.
Published in final edited form as: J Autism Dev Disord. 2024 Apr 16;55(5):1846–1856. doi: 10.1007/s10803-024-06339-w

Correlates of Impairment and Growth in Families of Young Autistic Children

Kristen T MacKenzie 1, Mario J Crown 1, Jessie B Northrup 1, Elizabeth Rutenberg 1, Amy G Hartman 1, Carla A Mazefsky 1
PMCID: PMC12445369  NIHMSID: NIHMS2106148  PMID: 38625489

Abstract

The purpose of this project was to investigate potential correlates of family life impairment in families of young autistic children. This project incorporated measures of specific child and parent challenges in addition to a commonly used unidimensional measure of autism characteristics. In this way, we could assess whether such challenges explain variance in family life impairment, and whether their inclusion diminish associations between autism characteristics and family life impairment. Cross-sectional data were collected from 564 parents of autistic children aged 2 to 5 years who participated in a larger online study. Participants completed measures on child characteristics (autism characteristics, emotion dysregulation, speaking ability, flexibility, and sleep problems), parent depression, and family life impairment, using the Family Life Impairment Scale (FLIS). Multiple linear regression models were generated to examine whether any of the independent variables were associated with the four domains of the FLIS. Models controlled for child age and sex, parent education, and single-parent homes. All independent variables were associated with impairment in one or more FLIS domains. None of the primary independent variables were significantly associated with positive growth. More overt characteristics and behaviors (e.g., autism characteristics, reactivity, speaking ability, and flexibility) were associated with impairment in domains that reflected a family’s ability to navigate the community. However, sleep challenges and parent and child emotional difficulties were most strongly associated with parent impairment. Findings suggests that families may have different needs across contexts and provide new avenues through which they might be better supported.

Keywords: Autism, Family impairment, Family life, Young children

Autism is a neurodevelopmental condition characterized by differences in communication and social interactions, which can present a spectrum of strengths and challenges for families. Parents of autistic children generally score lower on family-level outcomes, such as family functioning and quality of life, than families of non-autistic children (McStay et al., 2014a, 2014b; Walton, 2019). Deeper study into the contributors to these poorer outcomes has been limited, though, with prior work focusing predominantly on the influence of autism characteristics and child behavior difficulties on various aspects of family life.

Higher scores on measures of autism characteristics have been associated with poorer family outcomes, such as lower family quality of life and lower family coherence (Lei & Kantor, 2023; McStay et al., 2014a; McStay et al., 2014b; Rivard et al., 2023; Romaniuk et al., 2022). However, it is difficult to glean practical implications from these findings. The measures of autism characteristics most commonly used in these studies capture a wide range of diagnostic features and behavioral traits. These measures reflect autism characteristics in the form of total scores representing the likelihood that autism is present. From a methodological standpoint, these scores are useful for autism screening, but they lack dimensionality, making them less useful for determining specific areas of challenge and developing appropriate family supports. From an ethical standpoint, linking the presence of autism with poor family outcomes is stigmatizing to autistic people and oversimplifies the complexity of life for these families. Thus, more work is needed to better understand unique predictors of outcomes in families of young autistic children beyond simply the presence of autism.

The relationship between child behaviors and family outcomes has received the most attention in the literature. Prior work has found that increased child behavioral difficulties are related to greater parental stress, reduced family quality of life, and poorer family coherence (Pozo & Brioso, 2013; Gardiner & Iarocci, 2012; McStay et al., 2014a, 2014b; Rivard et al., 2023; Rao & Beidel, 2009; Karst & Hecke, 2012; Russa et al., 2015; Kissel & Nelson, 2016; Cassidy et al., 2008; Iadarola et al., 2018). These studies have identified a range of different types of behaviors, such as internalizing or externalizing behaviors, aggression, and self-injury, as significant correlates of poorer family outcomes.

Behavioral challenges are often seen as sequelae to deeper underlying processes and challenges for autistic children, yet little has been done to further investigate these underlying variables in the family literature. For example, communication challenges and behavioral rigidity have been associated with increased behavioral challenges such as externalizing and internalizing behaviors, self-injury, and aggression (Furniss & Biswas, 2012; Hentges et al., 2021; Hollenstein et al., 2004; Mazurek et al., 2013). Given that communication challenges and behavioral rigidity are also specific diagnostic features of autism, they could explain the association found between broad autism screeners and family outcomes. However, their potential contributions to family life remain understudied in the literature.

Another important underlying process that may be salient to both behavioral challenges and family outcomes is emotion dysregulation. Emotion dysregulation, or difficulty modifying the intensity or duration of one’s emotions in service of one’s goals, is a common challenge in autism (Conner et al., 2021). Emotion dysregulation in autistic children is associated with behavioral challenges (Berkovits et al., 2017) and with higher stress and poorer quality of life for parents (Davis & Carter, 2008; Nuske et al., 2017). However, only one study to date has examined the influence of emotional difficulties on family-level outcomes, finding that greater emotional difficulties were related to lower family quality of life when controlling for behavioral challenges and adaptive behavior (Rivard et al., 2023).

Child sleep problems are yet another important challenge disproportionately impacting autistic families (Schwichtenberg, et. al, 2022) that are likely to impact both behavioral challenges and family-level outcomes. Child sleep problems, such as delayed sleep onset, short sleep duration, and inefficient sleep, increase parental stress around bedtime, disrupt parental sleep, and negatively impact parental (namely maternal) mental health (Bourke-Taylor et al., 2013; Cotton & Richdale, 2006; Liu et al., 2021). Parent stress and mental health have also been shown to influence child sleep, both in the general population (Bai et al., 2021; Propper, et al., 2022; Sadeh & Anders, 1993) and in families with an autistic child (Doo, et al., 2006; Cortesi, et al., 2010; Waddington, 2020). Despite this, there is a dearth of knowledge about how child sleep problems influence family-level outcomes in families of autistic children.

Finally, the impact of parent mental health on family-level outcomes has been documented in the general population (Westrupp et al., 2023; Wiegand-Grefe et al., 2019). The potential links between parent mental health and family outcomes are less studied in the autism literature, despite evidence that parents of autistic children experience disproportionately high rates of depression (Marshall et al., 2018). There is evidence to suggest that greater stress and caregiving demands are associated with poorer quality of life and functioning for families with autistic children (Desquenne Godfrey et al., 2023; Gabra et al., 2021; Tsai et al., 2018; Marsack-Topolewski, 2022; Pisula & Porebowicz-Dorsmann, 2017; Rivard et al., 2023; Xue et al., 2014). Despite this, only a small number of studies have investigated the role of parent mental health, specifically depression, on family-level outcomes. Results of those studies suggest that higher parent depression is associated with more negative, frustrating parenting interactions and poorer family functioning (Jellett et al., 2015; Pruitt et al., 2016). Understanding the role of parent depression in various aspects of family impairment in families of young autistic children, particularly in the context of predictive child factors, would help to further delineate important areas for family support in this population.

A wide range of measures have been used to assess family outcomes in autism literature. Many studies have opted to capture broad measures of general function/dysfunction or overall family quality of life, while others capture more specific dimensions of family life, such as family adaptability or cohesion (Desquenne Godfrey et al., 2023). We opted to utilize the Family Life Impairment Scale (FLIS) in this study for multiple reasons. First, the FLIS has previously demonstrated strong psychometric properties in large samples of very young autistic children (Briggs-Gowan et al., 2006; Ellingson et al., 2004; Mian et al., 2018). Additionally, the FLIS measures the extent to which families are limited in their ability to participate in routine family activities, such as securing appropriate childcare or participating as a family in the community. These are important priorities to families of autistic people (Cassidy et al., 2008; Russa et al., 2015), thus enhancing the practical value of the FLIS. The FLIS also offers a parent impairment subscale, which is essential to understand, given evidence that there are bidirectional relationships between parent and child outcomes (Curci et al., 2023; Karst & Hecke, 2012; Paschall & Mastergeorge, 2016). Finally, the FLIS is unique in that it includes a dimension of positive growth, which captures a range of positive impacts of having an autistic child on a parent’s life. Parents rate the degree to which they have experienced an increase in spirituality, better relationships with family and friends, personal growth or maturation, better ability to advocate for themselves or their child, and improved spousal relationships as a direct result of having an autistic child. Parents of autistic children often describe both challenges and joys, as well as unique opportunities for growth as a result of their parenting experiences (Ooi et al., 2016; Waizbard-Bartov et al., 2019). A better understanding of the contributors to the positive impact of having an autistic child is an important prerequisite to strengths-based family support.

There is a paucity of literature examining the correlates of family outcomes for families of autistic children beyond broad measures of autism traits or child behavior challenges. Thus, the purpose of this project was to build on this work by examining the extent to which more specific child factors (emotion dysregulation, communication, flexibility, and sleep problems) and parent depression were associated with family life impairment, and whether they were able to explain any of the variance associated with the relationship between unidimensional measures of autism characteristics and family life impairment. We hypothesized that the selected child factors would be significantly associated with at least one domain of family life impairment. Further, we hypothesized that the relationship between autism characteristics and impairment would diminish when controlling for the more specific child factors. Additionally, we hypothesized that parent depression would be significantly associated with at least one aspect of family life impairment. We found no prior work examining whether child and parent factors are correlates of positive growth in these families; thus, these analyses were largely exploratory with no formal hypotheses.

Method

Design and Participants

This study analyzed cross-sectional data from a large online study (n = 1864) designed to test the psychometric properties of the Emotion Dysregulation Inventory—Young Child (EDI-YC; Day et al., 2023) in children with and without an autism diagnosis. Participants were recruited through local flyers, social media posts, past research studies, and active research registry networks at the University of Pittsburgh as well as from the national Simons Foundation Powering Autism Research (SPARK) registry. Participants from the larger dataset were included in the present sample if they were (1) 18 years of age or older, (2) the parent of a 2- to 5-year-old child with a parent-reported autism diagnosis, (3) able to read English, and (4) had complete data for all included variables. A total of 572 parents met inclusion criteria. Sample characteristics are shown in Table 1.

Table 1.

Sample characteristics

Variable M (SD)
N (%)
Child age 4.22 (1.08)
Child age at diagnosis 2.31 (.77)
Child sex (female)  137 (24%)
Child ethnicity (Hispanic)  111 (20%)
Child race
 White  505 (88%)
 Black   69 (12%)
 Asian   27 (5%)
 Native American   14 (2%)
 Native Hawaiian    5 (1%)
 Other   18 (3%)
Child verbal ability
 Meaningful, fluent speech   78 (14%)
 Meaningful, phrase speech  176 (31%)
 Meaningful, single words  119 (21%)
 Non-meaningful words and phrases   76 (13%)
 Non-speaking  123 (22%)
Parent gender
  Male   36 (6%)
  Female  535 (94%)
  Other    1 (< 1%)
Parent education
  Less than 8th grade    2 (< 1%)
  Some high school   14 (2%)
  Finished high school or equivalent   61 (11%)
  Some college, AA degree, technical school  221 (39%)
  Bachelor’s degree (BA/BS)  161 (28%)
  Post graduate degree  112 (20%)
Single parent households   83 (15%)
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Ethical Approval

All participants in the study provided written informed consent. The study was approved by the University of Pittsburgh Institutional Review Board. All procedures were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Measures

Family Life Impairment

The Family Life Impairment Scale (FLIS; Briggs-Gowan et al., 1997) is a 19-item informant-report questionnaire that assesses the extent to which family life is impacted by a child’s developmental, behavioral, or emotional challenges. The FLIS can assess total family life impairment, as well as impairment across 4 subdomains: family impairment, parent impairment, childcare impairment, and positive growth. Total and subscale scores are calculated by averaging all items and multiplying by the number of items answered in each domain. The four subdomains of family life impairment (family, parent, childcare, positive growth) were used as the dependent variables in our analyses. The family domain assesses the extent to which families can interact in the community together (e.g., restaurants, shopping, visiting others). The parent impairment domain assesses daytime exhaustion, spousal conflict, and the extent to which parents feel they can provide adequate attention to their other children. The childcare domain assesses the extent to which parents are able to make use of formal or informal childcare for their children (e.g., babysitters, relatives, etc.). Finally, the positive growth domain assesses the positive impact of having an autistic child for parents, including general perceptions of personal growth, improved relationships with spouse, family, and friends, greater spirituality, and better ability to advocate. The FLIS has demonstrated strong psychometric properties in samples of young autistic children (Briggs-Gowan et al., 2006; Ellingson et al., 2004; Mian et al., 2018). We evaluated the internal consistency of the FLIS subscales in our sample with Cronbach’s alpha. We noted good to excellent internal consistency for family impairment (α = 0.86), parent impairment (α = 0.75), and childcare impairment (α = 0.75). Internal consistency for positive growth was acceptable (α = 0.60).

Autism Characteristics

The Social Communication Questionnaire—Lifetime (SCQ; Rutter et al., 2003) is a widely used, well-validated 40-item informant-report autism screener that assesses social behaviors and communication. Respondents rate the presence or absence of common diagnostic features and behaviors in autism and a total score is calculated by summing the number of features and behaviors endorsed. Internal consistency of the SCQ was excellent in this sample (α = 0.85).

Child Emotion Dysregulation

The Emotion Dysregulation Inventory—Young Child (EDI-YC; Day et al., 2023) is a 23-item informant-report questionnaire designed to assess the severity of emotional reactivity (emotional intensity and speed of onset; 15 items) and dysphoria (unease and unhappiness; 7 items) in 2–5-year-old autistic children. Items are rated on a 5-point Likert scale [0 = Not at All; 4 = Very Severe]. Internal consistency in our sample was high for both reactivity (α = 0.97) and dysphoria (α = 0.86) and the measure has demonstrated strong psychometric properties in young autistic children (Day et al., 2023).

Child Flexibility and Sleep Problems

The PROMIS Early Childhood is a suite of brief, informant-report measures developed for use with children aged 1–5 (Lai et al., 2022a). The Self-Regulation – Flexibility (5 items) (Blackwell et al., 2022) and Sleep Problems (8 items) (Lai et al., 2022b) scales were used in the present study. The Flexibility scale measures a child’s ability to adapt to transitions, changes, and new ways of doing things. The Sleep Problems scale assesses a range of sleep disturbances that can affect the quality of sleep (e.g., resisting bedtime, difficulty falling asleep, night wakes, etc.) and the extent to which sleep difficulties impact daytime activities (e.g., daytime sleepiness, mood problems, etc.). For both PROMIS Early Childhood measures, respondents rate each item on a 5-point scale from “Never” to “Always.” Higher scores on Flexibility indicate greater flexibility and higher scores on Sleep Problems indicate more sleep problems. Both measures have shown excellent reliability and validity among young children (Blackwell et al., 2022; Lai et al., 2022b). Reliability was excellent in our sample of young autistic children for both flexibility (α = 0.90) and sleep problems (α = 0.90).

Child Speaking Ability

Speaking ability was measured with a single item on the study demographic form asking parents to describe their child’s current speaking ability on a 5-point scale. (1 = non-verbal fluent speech; 2 = non-meaningful words/phrases; 3 = meaningful single words; 4 = meaningful phrase speech; 5 = fluent speech). Children whose parents rated them as using non-meaningful words or phrases (n = 76, 13.3%) or non-verbal (n = 123, 21.5%) were collapsed into a single category to represent children who were minimally or non-speaking.

Parent Depression

Parents completed the Survey of Well-being of Young Children (SWBYC; Perrin et al., 2016), an informant-report questionnaire comprised of multiple, brief surveys that assess socioemotional and developmental problems in children from birth to 5 years, family characteristics, and social determinants of health. The SWBYC includes the Patient Health Questionnaire-2 (PHQ-2; Kroenke et al., 2003), which serves as a parent depression screener. The PHQ-2 is comprised of two items that assess depressed mood (“having little interest or pleasure in doing things”) and anhedonia (“feeling down, depressed, or hopeless”). These two items come from a larger depression screening instrument (PHQ-9) and have demonstrated strong psychometric properties with other measures of depression (Kroenke et al., 2003). Total scores on the PHQ-2 range from 0 to 6, with a score of 3 or greater indicating that a formal diagnosis of major depression is likely. PHQ-2 scores were used as measure of parent depression in the current study.

Analytic Plan

We conducted preliminary analyses to assess the internal consistency of each FLIS subscale. We also examined bivariate correlations between subscales. Next, stepwise linear regression models were constructed predicting each FLIS subdomain: family impairment, parent impairment, childcare impairment, and positive growth. All models controlled for child age and sex, parent education, and whether the parent had a parenting partner. Models were constructed in three steps. In step 1, demographic variables were added. In step 2, SCQ scores were added to examine associations between autism characteristics and each of the family life impairment domains. Finally, in step 3, child and parent predictors (i.e., child speaking ability, reactivity, dysphoria, flexibility, sleep problems, and parent depression) were added to the model to evaluate their association with family life impairment while also accounting for the association between autism characteristics and family life impairment. Criterion for statistical significance was set at p < 0.05.

Results

Preliminary Analyses

Bivariate correlations between subscales are shown in Table 2. The family, childcare, and parent impairment subscales had significant, small-to-moderate correlations with one other. Correlations with the positive growth subscale were still significant, but relatively smaller.

Table 2.

Bivariate correlations among FLIS subscales

Family impairment Childcare impairment Parent impairment
Childcare impairment  .62**
Parent impairment  .42**  .33**
Positive growth −.12** −.11* −.24**
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*

p < .05

**

p < .01

Primary Analyses

We first assessed whether autism characteristics, as measured by the SCQ, were associated with any subdomain of family life impairment, when controlling for child age and sex, parent education, and single parent households. Results showed that higher scores on the SCQ were significantly associated with greater impairment in three of the four FLIS domains: family impairment (β = 0.28, p < 0.01), parent impairment (β = 0.21, p < 0.01), and childcare impairment (β = 0.37, p < 0.01). Global autism characteristics were not significantly associated with positive growth.

Next, we added child speaking ability, child reactivity and dysphoria, child flexibility, child sleep problems, and parent depression to each model. The addition of these independent variables significantly increased the proportion of the variance explained for family impairment (ΔR2 = 13.91, p < 0.01), parent impairment (ΔR2 = 15.61, p < 0.01), and childcare impairment (ΔR2 = 11.65, p < 0.01). As shown in Table 3, in the family subdomain, more autism characteristics and sleep problems, lower speaking ability, less flexibility, and greater reactivity were associated with greater family impairment. In the childcare domain, more autism characteristics, lower speaking ability, greater reactivity, and less flexibility were associated with greater impairment. In the parent subdomain, greater child dysphoria and sleep problems, and greater parent depression were associated with greater parent impairment. Notably, the association between autism characteristics and parent impairment was no longer significant in the final model. Furthermore, effect sizes for autism characteristics predicting family and childcare impairment were reduced, particularly for family impairment (family impairment: From β = 0.28, p < 0.01 to β = 0.09, p = 0.048; childcare impairment: From β = 0.37, p < 0.01 to β = 0.22, p = 0.000). None of the primary independent variables were associated with positive growth (see Table 3 for all coefficients). Figure 1 shows standardized beta coefficients and 95% confidence intervals for all independent variables and their associations with family, parent, and childcare impairment.

Table 3.

Results of multiple linear regression analyses showing the associations between demographics, independent variables, and FLIS subdomains

Family impairment B (SE) [β] Parent impairment B (SE) [β] Childcare impairment B (SE) [β] Positive growth B (SE) [β]
Child age (years)   .13 (.11) [.05]  −.03 (.10) [−.01]   .29* (.11) [.12]  .18* (.08) [.10]
Child sex (female)  −.59* (.27) [.08]   .25 (.24) [−.04]  −.46 (.29) [.08]  .06 (.20) [.01]
Parent education   .24* (.12) [.08]   .37** (.10) [.15]   .02 (.12) [.01] −.20* (.09) [−.10]
Single parent household   .28 (.33) [.03]   .26 (.41) [.03]  −.31 (.35) [−.04] −.69** (.24) [−.12]
Autism characteristics   .04* (.02) [.09]   .02 (.02) [.06]   .08** (.02) [.22] −.01 (.01) [−.02]
Child speaking ability  −.38** (.12) [−.13]   .06 (.11) [.02]  −.29* (.13) [−.12] −.17 (.09) [−.09]
Child reactivity   .47** (.17) [.14]   .23 (.15) [.09]   .41* (.18) [.15] −.03 (.12) [−.01]
Child dysphoria   .31 (.17) [.09]   .34* (.15) [.12]  −.18 (.17) [−.06]  .07 (.13) [.03]
Child sleep problems   .26* (.12) [.09]   .33** (.11) [.14]   .23 (.13) [.10] −.07 (.09) [−.04]
Child flexibility  −.54** (.13) [−.18]  −.10 (.12) [−.04]  −.51** (.14) [−.21]  .04 (.10) [.02]
Parent depression   .05 (.08) [.03]   .41** (.07) [.24]   .02 (.09) [.01] −.07 (.06) [−.05]
F-statistic 14.51** 12.23** 11.28** 1.98*
Multiple R2   .22   .21   .27  .04
ΔR 2 a   .14**   .16**   .12**  .01
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a

Change in R2 from step 2 (SCQ only) to step 3 (addition of remaining independent variables)

*

p < .05

**

p < .01

Fig. 1.

Fig. 1

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Standardized beta coefficients and 95% confidence intervals in the final step of hierarchical regression, showing associations between independent variables and FLIS subscales. *For reference, beta coefficients above the horizontal line show the association between the autism characteristics (SCQ scores) and FLIS subscales before the addition of the Step 3 independent variables

Some demographic variables were also significantly associated with the FLIS domains in the final models. Families of older children reported significantly more childcare impairment (β = 0.12, p < 0.05), and less impairment in positive growth (β = 0.10, p < 0.05). Families with female children reported greater family impairment (β = 0.08, p < 0.05). Higher parent educational attainment was associated with significantly greater impairment in the family (β = 0.08, p < 0.05) and parent (β = 0.15, p < 0.01) domains, and less positive growth (β = −0.10, p < 0.05). Finally, being a single parent was significantly associated with greater impairment in positive growth (β = −0.12, p < 0.01).

Discussion

Families of young autistic children tend to report greater impairment on broad measures of family outcomes than those without autistic family members. However, the almost exclusive focus on general measures of autism characteristics and behavioral challenges in prior work provides only a cursory picture of family life and overlooks more specific needs and challenges that are common in autism, such as emotion dysregulation, communication, sleep problems, and flexibility. The purpose of this project was to investigate potential correlates of family life impairment, with particular attention to variables that capture specific challenges for autistic children and their families, rather than focusing solely on more broad, unidimensional measures of autism characteristics. We found that child emotion dysregulation, child flexibility, child speaking ability, child sleep problems, and parent depression were all significantly associated with domains of family life impairment. Moreover, associations between autism characteristics and family life impairment diminished or disappeared entirely with the addition of these more specific variables. Future research should continue to build on this work by prioritizing more specific challenges (i.e., child or parent challenges, family circumstances, etc.) that have practical applications to better guide the development of appropriate family support.

We found that challenges with reactivity and flexibility, lower speaking ability, and more autism characteristics were associated with how families interact in the community (e.g., errands, social outings, childcare, babysitters, etc.) in the form of both family and childcare impairment. This is consistent with literature describing how families of autistic children experience stigma when they are in the community, particularly when their autistic child is overtly distressed (DePape & Lindsay, 2015). Unpredictable or highly stimulating community environments may be difficult to navigate, particularly for autistic children with emotional reactivity or communication difficulties (Egilson et al., 2016). Spending time as a family is a noted priority for parents of autistic children. Thus, future work should further investigate how these variables influence family life and outings.

The effect of autism characteristics was markedly largest in the childcare domain. Parents of autistic children worry about leaving their children with unfamiliar caregivers or even familiar caregivers, including relatives, who may be unfamiliar with and/or unequipped to manage their child’s unique needs (Downes et al., 2021; Houser et al., 2014). Widespread stigma about autism, exclusionary behavioral policies, staffing shortages, and long waitlists also introduce systemic barriers to securing appropriate childcare (Blacher & Eisenhower, 2023; Haney, 2012; Houser et al., 2014; Matthews et al., 2011; Paula et al., 2020), which are likely to be disproportionately experienced by families of autistic children with higher support needs. Further, our findings suggest that securing appropriate childcare may be more challenging for families of older children. This is perhaps also due to increased stigma as children age and their autistic traits more visibly distinguish them from their neurotypical peers. These findings point to a major need for high-quality, autism-affirming childcare options that are sensitive to communication, behavioral, and emotional challenges, and better equipped to manage them.

With regard to parent impairment, we found that greater child dysphoria and greater parent depression were associated with greater parent impairment, while child reactivity, flexibility, speaking ability, and autism characteristics were not. This suggests that more overt challenges with reactivity, flexibility, speaking ability, and autism characteristics—which appear to have bearing on how families are interacting in the community—are less consequential to parents’ personal experiences and relationships. Instead, parents own’ mental health status and their child’s general unease and perceived sadness may weigh more heavily on them. A wide range of parent training interventions exist that are designed to teach parents how to structure daily life, support communication, and manage behaviors in the home; however, few parent interventions address parent mental health or their child’s dysphoria (MacKenzie & Eack, 2022). This is an area of need that should be a focus of future work.

We also found that child sleep problems were associated with both parent and family impairment, suggesting that in addition to impacting spousal relationships, parent exhaustion, and attention, sleep disturbances may have a wider impact on families’ ability to spend time together outside of the home. Child and parent sleep quality are correlated and generally poorer in families of autistic children than in families of non-autistic children (Hodge et al., 2013), which is associated with greater stress for parents (Johnson, et al., 2018). While the association between child sleep and parent and family impairment may be unsurprising, these findings call attention to the importance of targeting sleep as a way to improve the lives of autistic individuals and their families.

Finally, it is notable that none of the independent variables in this study were significantly associated with the positive growth subscale, which suggests that the positive impact of having an autistic child is not necessarily the conceptual inverse of impairment. In other words, even the presence of greater challenges with emotion dysregulation, flexibility, communication, and sleep are not significant barriers to the positive impacts of parenting an autistic child. Indeed, we found that correlations between the positive growth domain and other domains were relatively low. It is also possible that the lack of findings was due to methodological limitations of the FLIS in this sample, as the internal consistency of the positive growth subscale was acceptable, but low (α = 0.60). Future work should further investigate the use of this subscale in autistic samples and work to develop more appropriate conceptual models of growth and resilience to help inform strengths-based family support.

We identified several significant associations between demographic variables and FLIS subscales. First, we found that higher parent education was associated with greater family and parent impairment, and less positive growth. These findings were somewhat surprising given that higher educational achievement is typically thought to be associated with better outcomes for families. One possibility might be that parents who were more educated were also more likely to be working full time, and this might contribute to challenges with balancing family and work. Being a single parent and having a younger child was also associated with less positive growth. These variables introduce greater demands on parents to meet their families’ basic needs, which may result in less time and energy for personal growth, spirituality, and relationships. Finally, having a female child was associated with greater family impairment. This aligns with literature suggesting that early autism identification is less frequent for young girls unless they have lower intellectual ability or greater behavioral problems (Lockwood et al., 2021), which may explain why these families also reported greater family impairment. However, these findings should be interpreted with caution, as our sample size was large and effect sizes were in some cases, quite small (see Table 3).

These findings point to new avenues through which children and parents can be supported in practice. Prior work has focused primarily on associations between unidimensional measures of autism characteristics and family outcomes, which has centered global autism traits in conceptualizations of family life impairment. There are growing concerns among the autistic community that early behavioral interventions too often “conflate diagnostic traits with outcomes” (Ne’eman, 2021, p. 4). In light of these growing concerns, our findings are timely, and provide empirical support for treatment outcomes that encourage support in specific adaptive areas, such as communication, emotion regulation, coping with change, and improving sleep. Findings also point to the need for greater mental health screening and subsequent support for parents of young autistic children.

This study is not without limitations. All data was collected via parent report. Further, we used a single item about speaking ability as a measure of communication. Speaking ability is one part of communication, but it is not itself a comprehensive measure of an autistic child’s ability to communicate. Similarly, for parent depression, we used the PHQ-2, which has demonstrated good specificity and sensitivity for identifying major depression, but is typically used as a depression screener, rather than a comprehensive measure of depression. Future work should examine the impact of communication and parent depression on family outcomes using more comprehensive measures that have been validated in autistic samples. Additionally, the cross-sectional nature of the study limits the types of conclusions that can be drawn about the potential directionality of the included variables on family life. There is evidence in the literature to suggest that emotion dysregulation, sleep problems, and parent mental health may have bidirectional relationships with the outcomes of other family members (Greenlee et al., 2021; Rosen et al., 2022; Zaidman-Zait et al., 2014). Future longitudinal studies should further investigate these more complex relationships.

Conclusion

We found that emotion dysregulation, behavioral inflexibility, communication problems, sleep problems, and parent depression were associated with impairment for the families in our sample. More overt child characteristics and behaviors (e.g., autism characteristics, reactivity, speaking ability, and flexibility) had more bearing in impairment domains related to childcare and a family’s ability to navigate the community and/or interact with the public. However, sleep problems and parent and child emotional difficulties had the greatest bearing on parent impairment. These findings highlight that family life is multidimensional, and families may have needs and priorities that vary across contexts. Our findings also underscore the need to identify more contributors to family life beyond unidimensional measures of autism characteristics. More detailed inquiries into the specific challenges experienced by families of autistic children can also facilitate a shift away from centering global autism traits in conceptualizations of poor family outcomes and provide new avenues through which families might be better supported.

Funding

This study was funded by the National Institute of Child Health and Human Development, R01HD079512.

Footnotes

Conflict of interest The authors report no relevant disclosures or conflicts of interest.

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