Language(s) in Autism: Adult Children- and Parent-Reports on the Relationship between Language Use, Family Functioning, and Mental Health

doi:10.21203/rs.3.rs-4983768/v1

Download PDF

Research Article

Language(s) in Autism: Adult Children- and Parent-Reports on the Relationship between Language Use, Family Functioning, and Mental Health

https://doi.org/10.21203/rs.3.rs-4983768/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this latest preprint version

Societies have become more international, and the daily use of multiple languages is steadily increasing. However, parents of autistic people are often told to refrain from using multiple languages with their children and to use the culturally predominant language. However, family members might not be sufficiently proficient, and tongue-tied interactions might affect family members’ mental health and family interaction, possibly indirectly affecting children’s development via maladaptive parenting practices.

We used adult children (n = 29) and parent (n = 47) reports of families with autistic and neurotypical children to examine the relationships between language use, family functioning, and mental health. The questionnaire was offered online and included measures such as the SRS-2, Die Familienbögen, WHO-5, MDI, and WHOQOL-BREF, as well as questions about language and family culture created for this study.

Results identified differences in language use and underlying reasons between autism and control groups. Furthermore, our findings revealed alarming mental health difficulties and problematic family functioning in autistic adults. Partial Least Squares (PLS) regression further emphasized the importance of children’s socio-emotional skills, absence of depressive symptoms, and physical and environmental quality of life for family functioning.

Our findings stress the urgency of mental health difficulties in autistic people and problematic family functioning, which might yet again reinforce mental health challenges reciprocally and offer valuable information for interventions targeting mental health, family functioning, and language use in autism.

Psychology

autism

multilingualism

family functioning

parent mental health

multi-rater

self-advocate

Societies have become more international, and the daily use of multiple languages is steadily increasing (Grosjean, 2024). However, parents[i] of autistic people are often told to refrain from using multiple languages with their children as quite many autistic people are minimally or non-verbal (e.g., Rose et al., 2016). For pragmatic reasons, language recommendation often falls on the culturally predominant language, which, however, is not always sufficiently acquired by family members of different cultural backgrounds (Ijalba, 2016). Reduced language proficiency can lead to tongue-tied conversations and limited interactions between parents and their children, thus significantly influencing the family dynamic (e.g., Papoudi et al., 2021). Parents’ worries about language use can affect their mental health (e.g., Yu, 2016) and might indirectly affect children’s development via maladaptive parenting practices (e.g., Bonis & Sawin, 2016).

Language use and autism

It is estimated that at least half, possibly up to two-thirds, of the world’s population is bilingual (Grosjean, 2024). Bilingual people exist in nearly every country, independent of social class, age, and gender. Thus, multilingualism has become a norm rather than an exception (De Houwer, 2009), and, overall, globalization and immigration have increased multicultural influences. Many countries worldwide, such as Belgium, Bolivia, Canada, Finland, India, Luxembourg, Malta, Singapore, South Africa, Switzerland, and Zimbabwe, even have multiple official languages. While this increase in cultural exchanges offers numerous opportunities, many parents face the challenge of deciding which languages to choose for the upbringing and education of their children.

Parents of autistic children are especially concerned about this question, as a significant proportion of autistic people experience difficulties in acquiring spoken language. Approximately 25% to 50% of autistic people are minimally verbal or non-verbal (Norrelgen et al., 2015; Rose et al., 2016). Although the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5™; American Psychiatric Association [APA], 2013) withdrew general language development difficulties as an independent core criterion of Autism Spectrum Disorder, social communication and interaction difficulties remain crucial for the diagnosis. Several studies found that parents are often advised to use only one, mainly the culturally predominant language with their child (e.g., Hampton et al., 2017; Jegatheesan, 2011; Kay-Raining Bird et al., 2012; Kremer-Sadlik, 2005; Wharton et al., 2000). Professionals who recommend a monolingual approach often argue that raising a child with only one language may prevent language confusion and further delays in language development (Jegatheesan et al., 2010; Kremer-Sadlik, 2005; Wharton et al., 2000; Yu, 2013).

However, scientific research does not carry findings that support this claim. On the contrary, studies with various designs and methodologies and systematic reviews consistently find no significant disadvantageous outcomes for multilingual children compared to their monolingual peers in a wide variety of outcomes, including language skills, executive functions, autistic traits, and social and behavioral outcomes (e.g. Franco & Costa, 2024; Li et al., 2017; Lund et al., 2017; Siyambalapitiya et al., 2022). A few studies even report that multilingual participants had greater social functioning and communication skills than monolingual participants (Uljarević et al., 2016; Valicenti-McDermott et al., 2012).

Multilingualism and Family Functioning

The recommendation for monolingualism becomes even more questionable when considering that it is often given regardless of whether the parents and other family members are proficient in the recommended language (Kim & Roberti, 2014; Kremer-Sadlik, 2005; Yu, 2013). For example, in a study involving Hispanic immigrant mothers, 13 out of 22 families were advised to use only English with their autistic child, even though in 11 of those 13 families, at least one primary caregiver was unable to communicate in English (Ijalba, 2016). As a result, expressions of affection, instructions, and casual conversations may not be accurately conveyed, leading to a communication style that differs from what was intended. For instance, parents were found to be less affectionate and less encouraging of their autistic children’s speech when using English instead of their heritage languages (Baker, 2017; Hampton et al., 2017; Wharton et al., 2000) and experience frustration, emotional distancing, and limitations in communication and social integration (Franco & Costa, 2024; Fernandez y Garcia et al., 2012; Yu, 2016). Parents who choose to use their mother tongue with their children reported doing so, among other things, because they believe it is crucial to their children’s cultural identity development (Howard et al., 2021). They emphasize the importance of the heritage language in communicating with extended family, providing access to cultural community and events, and passing on values such as family solidarity, respect, and duty (Jegatheesan et al., 2010; Kim & Roberti, 2014; Yu, 2013). Consequently, discouraging multilingualism, particularly the use of the mother tongue, can lead to adverse outcomes in family communication, the overall family dynamic, and family members’ well-being (Baker, 2013; Ijalba, 2016; Jegatheesan, 2011; Kremer-Sadlik, 2005).

Some parents express concern about adopting a multilingual approach, often feeling torn between the desire to foster their child’s cultural heritage and following professional recommendations for monolingualism (Jegatheesan, 2011). Many experience guilt for not strictly adhering to these guidelines, fearing to confuse their child by mixing languages. As a result, they often opt for a monolingual upbringing in the culturally predominant language, motivated by the expected benefits of expert advice, their children’s more salient autistic traits, and concerns about losing access to essential support services and the backing of family and friends (Howard et al., 2021; Kay-Raining Bird et al., 2012). Practical considerations also play a significant role as finding comprehensive services in the family’s heritage language(s) can be challenging (Hampton et al., 2017; Yu, 2013). However, even English-proficient parents report difficulties understanding medical jargon and special needs terminology (Fox et al., 2017; You & Rosenkoetter, 2014). This emphasizes the extent of parents of autistic children’s worries about language use and their commitment to doing what is best for their children. Ultimately, parents prioritize minimizing their children’s life barriers, above and beyond language choice (Papoudi et al., 2021).

Mental Health and Quality of Life in Autism

These concerns may exacerbate the already heightened risk of mental health difficulties faced by parents of autistic children compared to those of neurotypical children (Hayes & Watson, 2013). Parents of autistic children repeatedly report an increased prevalence of stress, depression, anxiety, somatic complaints, and burnout (Bitsika & Sharpley, 2004; Lecavalier et al., 2005; Stewart et al., 2017; Weiss, 2002). Overall, parents of autistic children experience significantly more negative adverse physiological and psychological difficulties than parents of neurotypical children (Baker-Ericzén et al., 2005; Montes & Halterman, 2007; Pisula & Kossakowska, 2010; Weiss, 2002) or children with other developmental conditions, including down syndrome (Dabrowska & Pisula, 2010; Rodrigue et al., 1990), cerebral palsy (Mugno et al., 2007), cognitive developmental delay (Weiss, 2002), or general long-term health condition or disability (Seymour et al., 2017).

An integrative literature review identified many factors for parental distress in autism (Bonis & Sawin, 2016). Among the identified factors, a category related to children-specific aspects, included hyper- and hypo-sensory responsiveness and associated reactive behavior, disrupted sleep patterns, restrictive eating preferences, and aggressive, destructive, and self-harming behaviors. Another category, contextual aspects, included difficulties with healthcare access, social stigmatization, financial stress, parental fatigue, social isolation, and limited ability for self-care among parents. Additionally, concerns over the child’s future, including their life trajectory, social inclusion, and long-term safety and care, were emphasized. Protective factors, such as children´s prosocial behavior, higher parental educational levels, psychological acceptance, positive parenting beliefs, and social support from family members and friends, and the broader community were identified as well (Bonis & Sawin, 2016; Porter et al., 2022; Schiltz et al., 2023; Weiss et al., 2012).

Autistic people face an increased risk for co-occurring mental health conditions, too. In a meta-analysis summarizing results of 96 studies, autistic people showed increased prevalences for attention-deficit hyperactivity disorder (prevalence of 28%), anxiety disorders (20%), sleep-wake disorders (13%), disruptive, impulse-control and conduct disorders (12%), depressive disorders (11%), obsessive-compulsive disorder (9%), bipolar disorders (5%), and schizophrenia spectrum disorders (4%), independent from age, gender, cognitive abilities, and origin country of the studies (Lai et al., 2019).

Thus, it is not surprising that both autistic people and their parents are repeatedly found to have worse quality of life than neurotypical people and their children (Braden et al., 2021; Vasiloupolou & Nisbet, 2016). Some find that the reduced quality of life in autistic people is independent of age, developmental level, and intensity of autistic characteristics (Van Heijst & Geurts, 2015). Others found that physical quality of life is only worse in autistic women as compared to neurotypical people and that women´s mental quality of life was better in older age (Braden et al., 2021). In parents, quality of life was reduced significantly by being a mother, unemployment, lack of social support, and children’s autism and behavioral difficulties (Kuhlthau et al., 2014; Vasiloupolou & Nisbet, 2016).

Parent Mental Health and Parenting

The increased prevalence of mental health problems and reduced quality of life in autism might significantly influence the overall family dynamic. In a descriptive review of studies with non-autistic participants (Berg-Nielsen et al., 2002), psychiatric disorders in children or parents constituted major stressors for families and substantially affected parenting abilities. Parents with depression, anxiety, or personality disorders often express negativity towards their children, such as rejection, criticism, accusations, hostility, belittling, or ridiculing. Withal, the intensity of this negativity, rather than its specific type, was found to be more critical for children’s outcomes. This negativity was more common with children who themselves were dealing with depression, anxiety, or behavioral issues. Additionally, parents of children with behavioral problems often engaged in harsh, inconsistent discipline and were more likely to struggle with personality disorders and substance abuse.

Findings within autism research tend to be less straightforward. For instance, parenting stress was found to mediate the relationship between children’s behavioral challenges and parents’ sense of parenting self-efficacy (Rezendes & Scarpa, 2011). In their findings, reduced parenting self-efficacy further mediated the connection between increased parenting stress and the development of depression and anxiety in parents. A similar interrelation was found in another study exploring the interplay between child behavior problems, parent mental health, and family functioning. Their results indicated that parents’ depressive symptoms mediated the link between child behavior problems and family dynamics (Jellett et al., 2015). It was concluded that children’s problematic behavior only disrupted family interactions when parents felt overwhelmed and depressed. These findings are mirrored in research showing that psychological acceptance of children’s autism constitutes a significant partial mediator between child problem behavior and parent mental health difficulties and that, simultaneously, behavioral problems in children were linked to reduced psychological acceptance and subsequent mental health difficulties in parents (Weiss et al., 2012). While it is, of course, essential to consider that the parent-child interaction underlies a vast interplay of different factors (e.g., reduced joined attention [Adamson et al., 2012], autistic traits and difficulties in communication [Beurkens et al., 2013], general parenting style [Riany et al., 2017], children’s characteristics [Eisenberg et al., 1998], ...) parents’ mental health can play a crucial role for the family dynamic. Despite less direct findings, poor psychological health was linked overall to a wide range of parenting difficulties, including managing problematic autistic characteristics and behaviors, taking care of themselves, and navigating care systems and services (Bonis & Sawin, 2016).

The Present Study

Previous literature has presented that autistic people (e.g., Lai et al., 2019) and their parents have an increased risk for mental health difficulties than neurotypical people, as well as people with other diagnoses (e.g., Hayes & Watson, 2013). This increased prevalence of mental health issues might influence family interactions (e.g., Bonis & Sawin, 2016). At the same time, family interaction and parental well-being might also be related to the family’s language use at home. If parents use a language they do not feel comfortable with, they may experience frustration and risk miscommunication and restrictions in their communication (e.g., Papoudi et al., 2021). Consequently, those impeded interactions might constitute an increased risk for adverse outcomes in family members’ well-being, family communication, and the overall dynamic in the family (e.g., Baker, 2013; Ijalba, 2016; Jegatheesan, 2011; Kremer-Sadlik, 2005).

This study seeks to explore the intricate relationships between language use, family functioning, and mental health in families with autistic children and those with neurotypical children. The existing body of research on these topics is relatively limited and presents mixed findings, underscoring the need for further investigation. Our study will gather data from both, parents of autistic children and autistic people, as well as neurotypical controls to analyze how language use is connected to mental health and family dynamics in regard to autistic children. Drawing from previous literature, we hypothesize that (1) autistic children will not show significant differences from neurotypical children in their language use preferences. However, (2) parents of autistic children are more likely to use only one language or foreign languages when interacting with their children compared to parents of neurotypical children. We also propose that (3) parents may have different motivations for using either a single language or multiple languages with their children. Additionally, we hypothesize that (4) using parents’ mother tongue will correlate with better outcomes in mental health, quality of life, and family interactions. We anticipate that (5) families with autistic members will experience more mental health challenges and a lower quality of life than families with neurotypical members and (6) that family functioning will be more problematic in families with autism compared to neurotypical ones. Lastly, we expect that (7) reduced mental health and quality of life within the family will be closely associated with more problematic family functioning.

[i] The terminology parent(s) is used synonymously in this study to refer to children’s biological parents, non-biological parents, caregivers, guardians, and other people mainly responsible for the upbringing of the child in daily life.

Procedure

Participants were recruited via numerous professionals, major institutions and associations, parent forums, and social media groups for autism across Europe. In addition, the research project was shared with participants of previous projects, the research group’s website, and paid social media advertisements. The study was offered in English and distributed as a Qualtrics XM ™ online questionnaire (https://www.qualtrics.com).

Participants responded either as autistic adults, parents of an autistic person, neurotypical adults, or parents of a neurotypical person. After informed consent, the questionnaire started with questions about socio-demographic data. Participants were asked about their or their children’s language skills and their families’ decisions regarding language use at home. An English translation of the “Die Familienbögen” questionnaire (Cierpka & Frevert, 1994) was administered to assess family interactions. To conclude, participants were asked to report on their mental health using the WHO-5 (WHO, 1998a), the MDI (Bech et al., 2001), and the WHOQOL-BREF (WHO, 1998b). The collected data was subject to legal regulations of the EU General Data Protection Regulation (GDPR). Data was anonymous by design and stored on encrypted data servers of the University of Luxembourg. The study was approved by the Ethics Review Panel of the University of Luxembourg (ERP 24-006 LangAutism).

Participants

Out of 184 participants, 84 were excluded for early termination of the questionnaire, and 24 non-autistic, adults or children were excluded due to reports of diagnoses interfering with neurotypicality. The final groups included 15 autistic adults, 14 parents reporting for themselves and their autistic children, 38 neurotypical adults, and 9 parents reporting for themselves and their neurotypical children. Demographic data for all four groups can be retrieved from Table 1.

Of the 29 autistic adults and children, 19 were diagnosed with Asperger’s Syndrome, 3 with Kanner’s Syndrome, 3 with Pervasive Developmental Disorder Not Otherwise Specified, and 1 with Level 3 Autism Spectrum Disorder. Three lacked official diagnoses but had Social Responsiveness Scale – 2 [SRS – 2] scores indicating moderate to profound autism-related social and behavioral difficulties (T-scores = 69, 79, 86; Constantino & Gruber, 2012). Reports for co-occurring diagnoses included anxiety (n = 8), attention deficit hyperactivity disorder (ADHD; n = 7), depression (n = 12), learning disability (n = 1), eating disorders (n = 3), post-traumatic stress disorder (PTSD; n = 4), and social anxiety disorder (n = 1). In addition, 10 adults and children had speech delays ranging from mute to verbal, with sufficient self-expression ability.

Participants did not differ significantly in respondent gender, income satisfaction, and child gender and health issues. Bonferroni-corrected Dunn tests showed that neurotypical adults were significantly younger than parents of neurotypical children (p < .05) and parents of autistic children (p < .001), and that autistic adults were significantly younger than parents of autistic children (p < .01). The highest educational level in households of autistic adults (Mdn = Bachelor’s degree) was lower than the level in household of parents of neurotypical children (Mdn = Master’s degree; p < .05). Autistic adults reported to have significantly higher cognitive skills than autistic children (p < .01) and neurotypical adults (p < .05).

Furthermore, autistic children were significantly older than neurotypical children (H(3) = 7.90, p < .01) and they had significantly more prevalence of speech delay than autistic (Fisher’s Exact Test: p < .01, φ = .623) and neurotypical adults (Fisher’s Exact Test: p < .001, φ = .659). Autistic adults had lower social responsiveness in total than neurotypical adults (p < .05) and neurotypical children (p < .001). They also scored lower than neurotypical adults on all SRS-2 subscales (p < .01–.001), and lower than neurotypical children for social communication (p < .05), social motivation (p < .05), and restricted interests and repetitive behavior (p < .05). However, comparison results for the SRS-2 should be interpreted with caution due to data loss of 8 autistic and 10 neurotypical adults and children.

Table 1

Descriptive values for socio-demographic data of sample groups. Fisher’s Exact Tests (p), as well as Fisher-Freeman-Halton Exact Tests (p) and Kruskal-Wallis tests with Monte Carlo simulated significance values (p) and confidence intervals (95% CI) for group comparisons, with Phi (φ) and Cramér’s V (V) effect size measurements.

autistic adults

n = 15

parents of autistic children

n = 14

neurotypical adults

n = 38

parents of neurotypical children

n = 9

Measure

Test statistics

Respondent Gender

– Women (n, %)

– Men (n, %)

40.00%

30.00%

64.29%

35.71%

68.42%

28.95%

77.78%

22.22%

p = .109, V = 4.25

Respondent Age

Child Gender – Girls (n, %)

Child Age

Cognitive level ^a

Income satisfaction

Educational level ^b

29.87

n.a.

2.87

2.80

4.13

10.51

n.a.

0.35

0.94

1.41

50.50

16.93

2.00

4.86

9.89

21.43%

9.77

0.78

0.77

0.95

25.16

n.a.

2.37

2.45

4.34

5.44

n.a.

0.54

1.08

1.34

35.33

6.33

2.44

2.56

5.33

9.64

33.33%

7.05

0.53

1.13

0.50

H(3) = 36.65, p < .001, 95% CI [.000;.000]

p = .643, φ = -.132

H(3) = 7.90, p < .01, 95% CI [.002;.005]

H(3) = 13.83, p < .01, 95% CI [.001 ;.003]

H(3) = 5.24, p = .153, 95% CI [.144 ;.162]

H(3) = 10.02, p < .05, 95% CI [.012;.018]

Note. ^aCognitive level = self- and parent-reported cognitive level; Income satisfaction = 1 (very satisfied) to 5 (very unsatisfied); ^b Educational level = highest educational degree within the household.

Parents of autistic adults (Fisher’s Exact Test: p < .001, φ = -.569) and autistic children (Fisher’s Exact Test: p < .01, φ = .476) had an increased prevalence of a self- or adult-reported autism diagnosis. The difference to parents of neurotypical children was only marginally significant (Fisher’s Exact Test: p = .052, φ = -.447). Otherwise, parents did not differ in anxiety, ADHD, depression, eating disorders, substance use, and PTSD, and mental health diagnoses in general. Participants represented 44 nationalities, with 7 parents (30.43%) and 26 adults and children (34.21%) having multiple nationalities.

Instruments and Measures

Questionnaire on Socio-Demographic Data

Socio-demographic data was collected using self-formulated questions. Gathered data for adult children included questions about age, gender, nationality, occupation, mental health diagnoses, and other possible co-occurring diagnoses. Participants rated their level of cognitive development using a 3-point Likert scale (1 = lower than most people of my age, 2 = similar to most people of my age, 3 = higher than most people of my age). In addition, they gave information on their satisfaction with their financial resources (1 = very satisfied to 5 = very unsatisfied), the highest level of education within the family household, and the mental health diagnoses of their parents. Parents provided information on their age, gender, nationality, satisfaction with financial resources, level of education, and mental health diagnoses. In addition, they answered questions about their child’s age, gender, nationality, occupation, mental health diagnoses, cognitive development, and other possible co-occurring diagnoses.

Social responsiveness, as an index for autistic traits

The Social Responsiveness Scale – 2 [SRS–2] (Constantino & Gruber, 2012) was used to identify the presence and salience of autism-associated difficulties in social interactions and idiosyncratic, repetitive behavior patterns. The questionnaire was offered either as a self- or parent report, and all 65 items were answered via a 4-point Likert scale, ranging from 0 (not true) to 3 (almost always true). Scores are summed into five subscales (social awareness, social cognition, social communication, social motivation, and restricted interests and repetitive behavior and a total scale. Scores were standardized using the English normative values, where t-scores of 60 – 65 indicate mild social skills impairment, scores between 66 – 75 indicate moderate impairment, and t-scores of 76 and higher indicate significant deficiencies in reciprocal social behavior. Internal consistency of the SRS-2 ranges between Cronbach’s α = .94 – .96 across standardization and clinical subgroups (Bruni, 2014). Interrater reliability ranges from .61 to .92 across self-, parent-, spouse-, and relative-reports. Discriminant validity is outstanding between autistic people and neurotypical controls ROC-AUC = 1.0 (95 % CI .99 – 1.0) (Cholemkery et al., 2014).

Language and family culture

Participants reported on their/children’s language abilities and use, including how many languages were spoken at home and whether these included their or their parents’ mother tongues. They specified whether parents’ mother tongues were used to communicate with children and provided reasons for choosing one or multiple languages at home, selecting from nine literature-based options or adding up to two of their own. Participants ranked these reasons from 1 (most influential) to 11 (least influential) and could provide further explanations in open entries. Subsequently, they rated their/children’s language learning abilities and proficiencies, identifying which languages they/their child communicated best or most comfortably in across five contexts: at home, with extended family, friends, at school/work, and in leisure activities. For each context, participants could select one or several from the previously mentioned languages. Participants also indicated whether their parents knew them well or they knew their child well and whether they or their child enjoyed their family’s cultural traditions and took pride in their cultural/ethnic background.

Family Functioning

An English translation of Die Familienbögen (Cierpka & Frevert, 1994) was used to assess participants’ family functioning. Participants responded to 40 statements about their overall family interaction and 28 items about their behavior within the family. Answers were given via a 4-point Likert scale ranging from 0 (not true at all) to 3 (exactly true). Scores are summed into 7 subscales: task fulfillment, role behavior, communication, emotionality, affective relationship, control, and values and norms within the family. In addition, subscale scores are summed to an overall sum value. All outcomes are negatively scaled so that low scores identify the family’s strengths, while elevated scores are considered problems in the family interaction. Psychometric values for the questionnaire about overall family interaction are satisfactory to good with internal consistency ranging between .51 and .75 for all subscales, except the scale for values and norms which has a Cronbach’s α of .45. Reliability coefficients for the participants’ own behavior within the family ranges between .30 and .66. Intra-rater validity is satisfactory to excellent (Cronbach’s α ranging from .70 to .91) and interrater correlations ranging from r = .61 to .87 (Cierpka & Frevert, 1994).

Mental Health

Participants’s general mental well-being was assessed via the WHO (Five) Well-Being Index [WHO-5] (World Health Organization [WHO], 1998a). Using a 6-point Likert scale ranging from 0 (at no time) to 5 (all of the time), participants indicated how often they experienced a selection of given statements over the last two weeks. Total raw scores are quadrupled and range between 0 and 100. A higher score represents better well-being. Scores below 52, or any statement responded with the two lowest frequencies, are an indication of poor well-being and risk for depression. Internal consistency for the WHO-5 is high, with a Cronbach’s αof .91 (Löwe et al., 2004). The WHO-5 has an average sensitivity of .86 and an average specificity of .81 for detecting depressive symptoms across 18 studies (Topp et al., 2015).

Consequently, the Major Depression Inventory [MDI] (Bech et al., 2001) was used to identify depressive symptomatology. Depending on the highest ratings, 10 out of the 12 items are summed to an overall score. Although there are different ways to calculate cut-off scores, in general, a cut-off score of 21 represents mild depression, 26 indicates moderate depression severity, and 31 denotes more severe depressive symptoms (Bech et al., 2015). A score of 26 represents the best cut-off point with a sensitivity of 1.00 and a specificity of .82. Internal consistency for the MDI is very high, with Cronbach’s α of .94 (Bech et al., 2001).

Quality of life

The brief version of the World Health Organization Quality of Life [WHOQOL – BREF] (WHO, 1998b) was used to measure participants’ quality of life. The 25 questions can be answered using 5-point Likert scales of different specifications. Answers can be summed and averaged to create four domain scores: physical domain, psychological domain, social relationships domain, and environment domain. In addition, the first (overall quality of life) and second (overall health) questions are considered separately. Subsequently, domain scores are quadrupled and transcribed into scores ranging from 1 to 100 for better comparability. The WHOQOL-BREF is positively scaled, so higher scores denote higher quality of life. The WHOQOL-BREF has a good internal consistency, shown by Cronbach’s αranging from .66 to .84 (WHO, 1998b). Furthermore, the WHOQOL-BREF was shown to be able to discriminate against and between mental health issues significantly.

Language use preferences, actual use, and reasons for mono- or multilingualism

The hypotheses on language use (1, 2, and 3) were analyzed by comparing both autism groups jointly with both neurotypical groups jointly. Fisher’s Exact Tests revealed that autistic participants did not differ significantly from neurotypical ones regarding their language use preferences at home (p = .140, V = 265) and with extended family (p = .205, V = .272). Most participants preferred using one of their strongest languages in those settings. However, groups differed for language use with friends (p < .01, V = .387), at school or work (p < .001, V = 534), and during leisure activities (p < .01, V = .427). While both groups still preferred to use their strongest language, neurotypical participants preferred to use additionally one less strong language, whereas autistic participants preferred using a combination of their strongest and other languages. Our results thus indicate that, apart from their strongest language, neurotypical participants preferred monolingual language use despite possible limitations in proficiency, while autistic participants preferred a multilingual approach with their strongest language included.

Regarding hypothesis 2, neurotypical participants indicated that they would use 1 to 6 languages at home (M = 2.43, SD = 1.38). Autistic participants reported to use 1 to 7 languages at home (M = 1.97, SD = 1.48). This difference was not significant (Z(76) = 0.960, p = .315, δ = -.474), and more than half (56.58%) of the total sample reported using at least two languages at home. Almost all households used the mother tongue of the child (97.97 % in neurotypicality; 100.00% in autism) and the parents (87.23 % in neurotypicality; 96.55% in autism) at home. Furthermore, most of the participants used at least one of the parent mother tongues for communication between parents and the child (95.74 % in neurotypicality; 100.00% in autism). Groups did not differ significantly in their use of the mother tongue.

Hypothesis 3 was evaluated using frequency counts, mean ranks, and within-group percentages to examine factors influencing families’ decisions about monolingual or multilingual language use at home. Fisher’s Exact Tests were performed to assess group differences in these factors, with Phi coefficients used to measure effect size. Generally, groups did not differ significantly in their reasons for language choices. However, 50% of participants from the neurotypical group, compared to 24.14% from the autism group, reported that cultural and family traditions significantly influenced their decision to adopt monolingualism (p < .05, φ = -.266). Furthermore, participants from the neurotypical group attributed significantly more importance to recommendations by professionals (p < .05, φ = -.285), recommendations by family or friends (p < .05, φ = -.246), better socialization (p < .01, φ = -.338), and better access to education/work (p < .01, φ = -.395) for the decision of multilingualism, than participants from the autism group. The exact numbers are shown in Table 2.

Use of mother tongues, mental health, quality of life, and mental load

Because almost all participants used at least one of both parents’ mother tongues to converse with their children (see results for hypothesis 2), hypothesis 4 could not be analyzed. Hypothesis 5 was analyzed using Kruskal-Wallis group comparisons, which were significant for psychological well-being (WHO-5), depressive symptomatology (MDI), and quality of life (WHOQOL-BREF) in the physical, psychological, and social

Table 2

Frequencies, mean ranks, and within-group percentages for reasons influencing the family’s decision regarding language use at home. Fisher’s Exact Test (p) values for group differences in frequencies and percentages, with Phi (φ) effect size measurements.

autism groups

n = 29

neurotypical groups

n = 47

Fisher’s Exact Test

Mean rank

Reasons for monolingualism
Ease of communication

Better access to support and therapy

Recommendation by professionals

Recommendation by family or friends

Better socialization

Better access to education/work

Cultural and family traditions

Avoid confusion

Required by living environment

Other reason 1

Other reason 2

I don’t know

1.36

3.33

3.50

6.50

4.50

4.00

1.86

3.00

2.00

1.00

1.50

48.28%

10.34%

13.79%

6.90%

24.14%

17.24%

6.90%

2.33

3.89

4.80

3.73

4.75

4.57

2.50

2.95

3.14

2.00

1.00

50.00%

18.75%

20.83%

22.92%

16.67%

14.58%

50.00%

43.75%

29.17%

4.17%

p = 1.000, φ = -.027

p = .354, φ = -.117

p = .547, φ = -.094

p = .114, φ = -.213

p = .301, φ = -.145

p = .469, φ = -.120

p < .05, φ = -.266

p = .089, φ = -.207

p = .281, φ = -.141

p = .251, φ = .057

p = 1.000, φ = -.091

p = .633, φ = .057

Reasons for multilingualism

Ease of communication

Better access to support and therapy

Recommendation by professionals

Recommendation by family or friends

Better socialization

Better access to education/work

Cultural and family traditions

Avoid confusion

Required by living environment

Other reason 1

Other reason 2

I don’t know

1.75

2.67

3.00

6.00

2.25

3.33

1.75

4.00

2.00

1.00

13.79%

10.34%

3.45%

13.79%

10.34%

27.59%

10.34%

20.69%

6.90%

2.25

4.20

4.42

3.70

3.09

2.57

2.17

3.5

3.00

1.00

33.33%

20.83%

25.00%

20.83%

45.83%

47.92%

25.00%

8.33%

22.92%

4.17%

p = .064, φ = -.223

p = .348, φ = -.141

p < .05, φ = -.285

p < .05, φ = -.246

p < .01, φ = -.338

p < .01, φ = -.395

p = 1.000, φ = .023

p = 1.000, φ = .031

p = 1.000, φ = -.032

p = .522, φ = -.129

n.a.

p = .142, φ = .209

Note: Ranks range from 1 to 12, with lower ranks meaning higher attributed influence of the reason.

domains. Bonferroni-corrected Dunn’s test pairwise comparisons are shown in Figure 1. Most importantly, autistic adults reported psychological well-being was considerably below the cut-off score of 52 for significant poor well-being (M = 38.12; SD = 21.10) and exceeded the cut-off score for severe depression of 31 (M = 32.00; SD = 15.02). None of the other groups reached clinically relevant cut-off scores, except for neurotypical adults who touched the lower bound for mild depression (M = 21.13; SD = 12.91).

Family Functioning across groups

Hypothesis 6 was tested with group comparisons for family functioning (Die Familienbögen), which were all significant except for the subscale of role behavior. Pairwise comparisons were computed with Bonferroni-corrected Dunn’s tests, and significant differences for all subscales can be retrieved from Figure 2. As for the total scale, parents of neurotypical children reported significantly less problematic family functioning (M = 33.89; SD = 20.44) than neurotypical adults (M = 63.18; SD = 28.54; p < .05) and autistic adults (M = 84.13; SD = 27.57; p < .001). Furthermore, autistic adults reported marginally significantly more problematic family functioning (M = 84.13; SD = 27.57) than parents of autistic children (M = 53.71; SD = 30.17; p = .05). Furthermore, groups did also differ regarding the 3 final questions for language and family culture. Autistic adults reported to be less well known by their parents (Mdn = 4), compared to how well parents of neurotypical children (Mdn = 5; p < .05) rated their knowledge of their children. The difference to parents of autistic children was only marginally significant (Mdn = 5; p = .052). Autistic adults enjoyed their family’s cultural background less (Mdn = 3) than neurotypical adults (Mdn = 4; p < .01) and neurotypical parent-reported children (Mdn = 5; p < .05). Lastly, autistic adults were also less proud of their cultural background (Mdn = 3) than neurotypical adults (Mdn = 5; p < .01) and neurotypical parent-reported children (Mdn = 5; p < .05).

Identifying predictors for family functioning

To examine Hypothesis 7, we first ran non-parametric correlations to identify predictors of family functioning (FB total), analyzing respondent and child gender, age, autism diagnosis, children’s socio-emotional skills (SRS-2), psychological well-being (WHO-5), depressive symptoms (MDI), and quality of life (WHOQOL-BREF subscales). Given the potential effects of mediation of mental health difficulties, additional partial correlations were run to control for WHO-5 and MDI. Based on these results, we selected respondent gender, child gender, socio-emotional skills, psychological well-being, depressive symptoms, and physical and environmental quality of life for our regression model. To account for our relatively small sample-to-predictor

Table 3

Partial least squares (PLS) regression analysis for the relationships between respondent gender, child gender, children’s socio-emotional skills, psychological well-being, depressive symptomatology, and physical and environmental quality of life and the dependent variable, i.e., family functioning (FB total).

		Latent factors
	Estimate		1			2			3
	Estimate	loadings	weights	VIP	loadings	weights	VIP	loadings	weights	VIP
(Constant)	50.910
Respondent Gender	7.369	.334	.349	.923	.238	.264	.917	-.662	.174	.915
Child Gender	-1.110	.284	.261	.691	.009	-.378	.702	-.809	-.879	.721
SRS-2 Total	.619	.388	.424	1.123	.921	.637	1.145	-.179	-.097	1.142
WHO-5	-.246	-.357	-.369	.976	.054	-.219	.966	-.541	-.538	.969
MDI	.144	.421	.401	1.060	-.434	-.313	1.053	.256	-.040	1.051
WHOQOL-BREF physical	-.059	-.453	-.423	1.120	.517	.477	1.124	-.191	.274	1.123
WHOQOL-BREF environment	-.285	-.388	-.393	1.040	.163	-.106	1.024	-.343	-.461	1.026

Note. AdjustedR²= .317; VIP = variable importance in the projection. Family functioning is negatively scaled so that high numbers represent more problems in the family interaction. SRS-2 and MDI are negatively scaled as well. WHO-5, WHOQOL-BREF physical, and WHOQOL-BREF environment are positively scaled.

ratio and high risk for multicollinearity due to predictor definitions, we conducted with three latent factors: variance tied to mental health, children’s gender and socio-emotional skills, and quality of life. The model explained 31.71% of the variance in family functioning (Adjusted R² = 0.32; Table 3). Family functioning was more problematic for fathers, children’s socio-emotional skill difficulties, and depressive symptoms. Female gender of children, and superior psychological well-being and quality of life correlated with less problematic functioning. Factor 1 was associated with depressive symptoms (.421) and reduced physical quality of life (-.453), while Factor 2 correlated most with socio-emotional skill difficulties (.921) and increased physical quality of life (.517). Factor 3 was most related to child gender (-.809) and respondent female gender (-.662). The most influential predictors for family functioning were socio-emotional skills (M_VIP = 1.137), physical quality of life (M_VIP = 1.122), depressive symptoms (M_VIP = 1.055), and environmental quality of life (M_VIP = 1.030).

Preferences in language use

Our study had as its main aim to analyze the relationships between language use, family functioning, and mental health in families with autistic children compared to families with neurotypical children, using adult children and parent reports. Based on previous literature, we expected that autistic and neurotypical people do not differ regarding their intrinsic language use preferences. According to the self- and parent reports in this study, autistic and neurotypical adults and children mostly preferred using their strongest language when interacting with other people. Depending on the context, though, autistic people showed an additional preference for using multiple languages, including their most proficient language, while neurotypical people showed a greater interest in using a second, less proficient language than using multiple languages. These results seem surprising and did not fully align with our expectations, but they might be linked to participants’ overall reasons for using one or multiple languages discussed here below.

Use of several languages and mother tongues

Most families in our study included both children’s and parents’ mother tongues and used at least one parent’s mother tongue to converse with their children (94.74 – 100%), which diverged from existing literature and our hypothesis on language use in families with autistic members. While autistic adults reported fewer languages spoken at home than neurotypical families, over half of our sample still used at least two languages. In previous studies, parents’ mother tongue was usually replaced with one culturally predominant language (e.g., Hampton et al., 2017; Jegatheesan, 2011) to avoid alleged confusion due to multiple language use in autism (e.g., Jegatheesan et al., 2010; Yu, 2013). Thus, it could be that participants in our study decided first on a multilingual upbringing and had no incentive to replace their mother tongue. The primary reasons for monolingualism of all our participants were ease of communication, cultural traditions, and avoiding confusion. Multilingualism was driven by better socialization, access to education and work, ease of communication, and cultural and family traditions. Hence, monolingualism seemed to be driven by family communication and cultural exchange, while multilingualism provided better access to social and professional integration.

While both groups shared mostly similar motivations, participants in autism groups cited cultural traditions as a less significant reason for monolingualism. They were less influenced by professional or social recommendations, better socialization, and access to education and work multilingualism compared to neurotypical families. Autistic participants mostly cited cultural traditions and living environment as their main reasons for multilingualism. Our findings align with previous studies showing interest in maintaining multiple languages for cultural reasons (e.g., Jegatheesan et al., 2010; Kim & Roberti, 2014) despite receiving less professional encouragement to do so (Howard et al., 2021; Kay-Raining Bird et al., 2012). While research has not found significant adverse outcomes from multilingualism in autistic children (e.g., Lund et al., 2017; Siyambalapitiya et al., 2022), some studies identified adverse outcomes when parents refrained from using their mother tongue (e.g., Baker, 2013; Ijalba, 2016). One of our participants in the autism groups reported having received a professional recommendation for multilingualism, which was also found for 4 out of 17 families with autistic children in a qualitative interview study from 2017 (Hampton et al.). Thus, there are indications that some professionals consider and recommend multilingual language use, and we hope that the lack of evidence for adverse effects will encourage professionals to reconsider generic recommendations against multilingualism and tailor advice to individual family needs and multicultural social contexts.

Mental health, quality of life in autism

Since groups did not differ in their use of parents’ mother tongues with their children, we could not analyze its relation to mental health, quality of life, and family interaction. Nonetheless, independent of language use, autistic adults had significantly lower psychological well-being, more depressive symptoms, and reduced psychological, physical, and social quality of life compared to neurotypical participants (e.g., Braden et al., 2021; Lai et al., 2019). Their scores fell below clinically significant cut-offs, indicating alarmingly low well-being and severe depression.

Interestingly, contrary to much of the literature, parents of autistic children had better mental health and quality of life than expected (e.g., Bonis & Sawin, 2016; Vasiloupolou & Nisbet, 2016). However, there is a small body of literature suggesting that caring for a child with high needs might have positive effects on parents, such as a greater appreciation of the child’s accomplishments, an enhanced sense of personal strength and confidence, and a greater appreciation of life in general (Beighton & Wills, 2017). Parents reported that they had made more meaningful arrangements of priorities, developed deeper relationships, increased faith and spirituality, and appreciated their child’s positive effect on the broader community. For instance, Korean immigrant mothers reported learning humility and finding more meaning in their lives since caring for their children with disabilities (You & Rosenketter, 2014).

Family functioning and its predictors

Autistic adults reported significantly more problematic family functioning than neurotypical adults and parents of neurotypical children, particularly in communication, emotionality, affective relationship, task fulfillment, and values and norms. They also expressed less enjoyment, pride, and connection with their families’ cultural backgrounds and felt less well-known by their parents. Our findings align with previous research in which neurotypical children’s mental health problems were associated with disruptive family functioning (Berg-Nielsen et al., 2002). While directionality could not be identified and interrelations underly interplays of genetic and environmental factors, family interactions are often affected in cases of child anxiety, conduct disorder, and depression. Since autistic adults in our study reported significantly low mental health, we believe that this might relate to their reports of problematic family functioning.

Our PLS regression results, which identified family functioning predictors, support this hypothesis. Within our model, children’s reduced socio-emotional skills, increased depressive symptoms, and reduced physical and environmental quality of life constituted the most influential predictors of more problematic family functioning.

Limitations

The results of this study should be interpreted with consideration of limitations. Firstly, it is essential to note that while we had implemented bot controls to avoid fraudulent participation, we could not ensure the eligibility of participants. Due to the design of an online study, we could not verify participants’ legal age nor control the reliability of their diagnoses. Similarly, the quality and truthfulness of the participants’ reports cannot be ensured. Analyzing family functioning as direct observations and with multiple perspectives for the same families would have increased the reliability and validity of our findings immensely. Furthermore, a few participants indicated in a final comment section that they had difficulties understanding our question about the reasons for mono- and multilingualism. Although we specified at the beginning of the survey that participants could contact us in case of questions, this offer was not used, and data might be biased for these few participants. Also, parent reports should be interpreted with additional care as some reported that they were unsure about their children’s abilities, especially regarding children’s social skills. This could be related to the increased prevalence of autism diagnoses in parents of autistic children in our sample as well. On the other hand, younger children might not have yet developed the self-awareness to answer questions truthfully about some of their abilities either. We estimated that by incorporating both self- and parent reports, we might counterbalance both limitations of perspectives.

While the cultural diversity among our participants brings great value to our research questions of language use, it also decreases the generalizability of our findings as we have a relatively small sample size compared to the variety of cultural influences. Also, the participant groups in our study had significant differences in some demographic variables. Although some of the differences were expected (e.g., parents being older than adult children or autistic people having more mental health diagnoses), the differences might have influenced their understanding of the questionnaire and limited the generalizability of our findings, as, for example, the increased cognitive level in autistic adults in regards to the broad spectrum of autism.

Most importantly, we want to stress that longitudinal data could not be collected due to the limited time allocated for this project. Repeated data assessments dispersed over time would significantly enhance understanding of the complex interrelation of the constructs used in this study. It would allow tracking the development of children’s language and social abilities, parents’ mental health, and the parent-child relationship over time and identifying directionalities. With additional participants and thus greater statistical power, longitudinal data would allow more complex statistical computations, such as structural equations or multilevel modeling, to be used. These models would allow even more disentanglement of the bi- or multidirectional relations between the constructs of interest.

Implications and Conclusion

Despite the limitations in the generalizability of our findings, the results of our study shed differentiating light on the interrelations between language use, mental health, and family functioning in autism. Using adult children and parent reports from both autism and neurotypical families, we found once more that autistic families, in contrast to neurotypical families, are not advised to use multiple languages, despite that they value multilingualism highly for cultural family traditions and their living environment. They also reported that wanting to avoid confusion was their third most important reason for applying a monolingual upbringing, although scientific literature has still not identified adverse outcomes to the monolingual upbringing of autistic children.

We also found severely reduced mental health and quality of life in autistic adults, which, next to reduced socio-emotional skills, constituted significant predictors of more problematic family functioning, which then again can have subsequent reciprocal adverse outcomes for family members. Although we were not able to analyze the effects of language (i.e., mono- vs. multilingualism and presence vs. absence of the mother tongue) on mental health, quality of life, and family functioning, a spontaneous statement of one of our participants implies interrelation between the constructs: “I just often feel overwhelmed with the autism of my son, and I feel we don’t get enough support for him and for us as parents. Much of it is due to living in a foreign country, whose languages we don’t speak.”

Consequently, our results provide valuable information for clinical interventions and stress autistic adults’ crucial need for mental health support and, most importantly, a need for assistance in reestablishing a good quality of life. A significant improvement in those needs could also mean significant improvements in family functioning, thus increasing the mental health of parents. In addition, our results indicate that families with autistic children report reasons for language use that are based on faulty conjectures and highlight a need for change in language use policies.

Adamson LB, Bakeman R, Deckner DF, Nelson PB (2012) Rating parent–child interactions: Joint engagement, communication dynamics, and shared topics in autism, Down syndrome, and typical development. J Autism Dev Disord 42:2622–2635. https://doi.org/10.1007/s10803-012-1520-1
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders (5th ed.). https://doi.org/10.1176/appi.books.9780890425596
Baker-Ericzén MJ, Brookman-Frazee L, Stahmer A (2005) Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Res Pract persons severe Disabil 30(4):194–204. https://doi.org/10.2511/rpsd.30.4.194
Baker D (2013) Particular polyglots: Multilingual students with autism. Disabil Soc 28(4):527–541. https://doi.org/10.1080/09687599.2012.717883
Baker D (2017) The language question: considering three Somali American students with autism. Multiple Voices Ethnically Diverse Except Learners 17(1):20–38. https://doi.org/10.56829/1547-1888.17.1.20
Bech P, Rasmussen NA, Olsen LR, Noerholm V, Abildgaard W (2001) The sensitivity and specificity of the Major Depression Inventory, using the Present State Examination as the index of diagnostic validity. J Affect Disord 66(2–3):159–164. https://doi.org/10.1016/S0165-0327(00)00309-8
Bech P, Timmerby N, Martiny K, Lunde M, Søndergaard S (2015) Psychometric evaluation of the Major Depression Inventory (MDI) as depression severity scale using the LEAD (Longitudinal Expert Assessment of All Data) as index of validity. BMC Psychiatry 15:1–7. https://doi.org/10.1186/s12888-015-0529-3
Beighton C, Wills J (2017) Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration. J Intellect Disabil 21(4):325–345. https://doi.org/10.1177/1744629516656073
Berg-Nielsen TS, Vikan A, Dahl AA (2002) Parenting related to child and parental psychopathology: A descriptive review of the literature. Clin Child Psychol Psychiatry 7(4):529–552. https://doi.org/10.1177/1359104502007004006
Beurkens NM, Hobson JA, Hobson RP (2013) Autism severity and qualities of parent–child relations. J Autism Dev Disord 43:168–178. https://doi.org/10.1007/s10803-012-1562-4
Bitsika V, Sharpley CF (2004) Stress, anxiety and depression among parents of children with autism spectrum disorder. J Psychologists Counsellors Schools 14(2):151–161. https://doi.org/10.1017/S1037291100002466
Bonis SA, Sawin KJ (2016) Risks and protective factors for stress self-management in parents of children with autism spectrum disorder: An integrated review of the literature. J Pediatr Nurs 31(6):567–579. https://doi.org/10.1016/j.pedn.2016.08.006
Braden BB, Pagni BA, Monahan L, Walsh MJ, Dixon MV, Delaney S, Ballard L, Ware JE (2021) Quality of life in adults with autism spectrum disorder: influence of age, sex, and a controlled, randomized mindfulness-based stress reduction pilot intervention. Qual Life Res 1–14. https://doi.org/10.1007/s11136-021-03013-x
Bruni TP (2014) Test review: Social responsiveness scale–Second edition (SRS-2). J Psychoeducational Assess 32(4):365–369. https://doi.org/10.1177/0734282913517525
Cholemkery H, Kitzerow J, Rohrmann S, Freitag CM (2014) Validity of the social responsiveness scale to differentiate between autism spectrum disorders and disruptive behaviour disorders. Eur Child Adolesc Psychiatry 23:81–93. https://doi.org/10.1007/s00787-013-0427-5
Cierpka M, Frevert G (1994) Die Familienbögen: ein Inventar zur Einschätzung von Familienfunktionen. Hogrefe
Constantino JN, Gruber CP (2012) Social Responsiveness Scale, 2nd edn. Western Psychological Services (WPS)
Dabrowska A, Pisula E (2010) Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. J Intellect Disabil Res 54(3):266–280. https://doi.org/10.1111/j.1365-2788.2010.01258.x
De Houwer A (2009) Bilingual first language acquisition. Multilingual Matters
Digard BG, Sorace A, Stanfield A, Fletcher-Watson S (2020) Bilingualism in autism: Language learning profiles and social experiences. Autism 24(8):2166–2177. https://doi.org/10.1177/1362361320937845
Eisenberg N, Cumberland A, Spinrad TL (1998) Parental socialization of emotion. Psychol Inq 9(4):241–273. https://doi.org/10.1207/s15327965pli0904_1
Fernandez y Garcia E, Breslau J, Hansen R, Miller E (2012) Unintended consequences: An ethnographic narrative case series exploring language recommendations for bilingual families of children with autistic spectrum disorders. J Med Speech-Language Pathol 20(2):10–16
Fox F, Aabe N, Turner K, Redwood S, Rai D (2017) It was like walking without knowing where I was going: A Qualitative Study of Autism in a UK Somali Migrant Community. J Autism Dev Disord 47:305–315. https://doi.org/10.1007/s10803-016-2952-9
Franco M, Costa AP (2024) Should Parents Only Use One Language with Their Autistic Children? The Relations Between Multilingualism, Children‘s Social Skills, and Parent-Child Communication. J Autism Dev Disord 1–13. https://doi.org/10.1007/s10803-024-06347-w
Grosjean F (1982) Life with two languages: An introduction to bilingualism. Harvard University Press
Grosjean F (2024) The Statistics of Bilingualism. On Bilinguals and Bilingualism. Cambridge University Press, pp 138–147
Hampton S, Rabagliati H, Sorace A, Fletcher-Watson S (2017) Autism and bilingualism: A qualitative interview study of parents’ perspectives and experiences. J Speech Lang Hear Res 60(2):435–446. https://doi.org/10.1044/2016_JSLHR-L-15-0348
Hayes SA, Watson SL (2013) The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. J Autism Dev Disord 43:629–642. https://doi.org/10.1007/s10803-012-1604-y
Howard K, Gibson J, Katsos N (2021) Parental perceptions and decisions regarding maintaining bilingualism in autism. J Autism Dev Disord 51(1):179–192. https://doi.org/10.1007/s10803-020-04528-x
Ijalba E (2016) Hispanic immigrant mothers of young children with autism spectrum disorders: how do they understand and cope with autism? Am J Speech-Language Pathol 25(2):1–14. https://doi.org/10.1044/2015_AJSLP-13-0017
Jegatheesan B (2011) Multilingual development in children with autism: Perspectives of South Asian Muslim immigrant parents on raising a child with a communicative disorder in multilingual contexts. Bilingual Res J 34(2):185–200. https://doi.org/10.1080/15235882.2011.597824
Jegatheesan B, Miller PJ, Fowler SA (2010) Autism from a religious perspective: a study of parental beliefs in South Asian Muslim immigrant families. Focus Autism Other Dev Disabil 25(2):98–109. https://doi.org/10.1177/1088357610361344
Jellett R, Wood CE, Giallo R, Seymour M (2015) Family functioning and behaviour problems in children with Autism Spectrum Disorders: The mediating role of parent mental health. Clin Psychol 19(1):39–48. https://doi.org/10.1111/cp.12047
Kay-Raining Bird E, Lamond E, Holden J (2012) Survey of bilingualism in autism spectrum disorders. Int J Lang Communication Disorders 47(1):52–64. https://doi.org/10.1111/j.1460-6984.2011.00071.x
Kim H, Roberti M (2014) Tengo que habla español. Yo no entiendo ingles! A qualitative case study on a bilingual child with Autism Spectrum. J Special Educ Apprenticesh 3(1). https://doi.org/10.58729/2167-3454.1035
Kremer-Sadlik T (2005) To be or not to be bilingual: Autistic children from multilingual families. In J. Cohen, K. T. McAlister, K. Rolstad, & J. MacSwan (Eds.), Proceedings of the 4th International Symposium on Bilingualism (pp. 1225–1234). Cascadilla Press
Kuhlthau K, Payakachat N, Delahaye J, Hurson J, Pyne JM, Kovacs E, Tilford JM (2014) Quality of life for parents of children with autism spectrum disorders. Res Autism Spectr Disorders 8(10):1339–1350. https://doi.org/10.1016/j.rasd.2014.07.002
Lai MC, Kassee C, Besney R, Bonato S, Hull L, Mandy W, Szatmari P, Ameis SH (2019) Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. Lancet Psychiatry 6(10):819–829. https://doi.org/10.1016/S2215-0366(19)30289-5
Lecavalier L, Leone S, Wiltz J (2006) The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. J Intellect Disabil Res 50(3):172–183. https://doi.org/10.1111/j.1365-2788.2005.00732.x
Li H, Oi M, Gondo K, Matsui T (2017) How does being bilingual influence children with autism in the aspect of executive functions and social and communication competence? J Brain Sci 47:21–49. https://doi.org/10.20821/jbs.47.0_21
Lund EM, Kohlmeier TL, Durán LK (2017) Comparative language development in bilingual and monolingual children with autism spectrum disorder: A systematic review. J Early Intervention 39(2):106–124. https://doi.org/10.1177/1053815117690871
Löwe B, Spitzer RL, Gräfe K, Kroenke K, Quenter A, Zipfel S, Buchholz C, Witte S, Herzog W (2004) Comparative validity of three screening questionnaires for DSM-IV depressive disorders and physicians’ diagnoses. J Affect Disord 78(2):131–140. https://doi.org/10.1016/S0165-0327(02)00237-9
Montes G, Halterman JS (2007) Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics 119(5):e1040–e1046. https://doi.org/10.1542/peds.2006-2819
Mugno D, Ruta L, D'Arrigo VG, Mazzone L (2007) Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health Qual Life Outcomes 5:1–9. https://doi.org/10.1186/1477-7525-5-22
Nolte K, Fletcher-Watson S, Sorace A, Stanfield A, Digard BG (2021) Perspectives and experiences of autistic multilingual adults: a qualitative analysis. Autism Adulthood 3(4):310–319. https://doi.org/10.1089/aut.2020.0067
Norrelgen F, Fernell E, Eriksson M, Hedvall Å, Persson C, Sjölin M, Gillberg C, Kjellmer L (2015) Children with autism spectrum disorders who do not develop phrase speech in the preschool years. Autism 19(8):934–943. https://doi.org/10.1177/1362361314556782
Papoudi D, Jørgensen CR, Guldberg K, Meadan H (2021) Perceptions, experiences, and needs of parents of culturally and linguistically diverse children with autism: a scoping review. Rev J Autism Dev Disorders 8:195–212. https://doi.org/10.1007/s40489-020-00210-1
Pisula E, Kossakowska Z (2010) Sense of coherence and coping with stress among mothers and fathers of children with autism. J Autism Dev Disord 40:1485–1494. https://doi.org/10.1007/s10803-010-1001-3
Porter N, Loveland KA, Saroukhani S, Posey Y, Morimoto K, Rahbar MH (2022) Severity of Child Autistic Symptoms and Parenting Stress in Mothers of Children with Autism Spectrum Disorder in Japan and USA: Cross-Cultural Differences. Autism Research and Treatment, 2022, 1–19. https://doi.org/10.1155/2022/7089053
Rezendes DL, Scarpa A (2011) Associations between parental anxiety/depression and child behavior problems related to autism spectrum disorders: The roles of parenting stress and parenting self-efficacy. Autism Res Treat 2011(1):395190. https://doi.org/10.1155/2011/395190
Riany YE, Cuskelly M, Meredith P (2017) Parenting style and parent–child relationship: A comparative study of Indonesian parents of children with and without Autism Spectrum Disorder (ASD). J Child Fam stud 26:3559–3571. https://doi.org/10.1007/s10826-017-0840-3
Rodrigue JR, Morgan SB, Geffken G (1990) Families of autistic children: Psychological functioning of mothers. J Clin Child Psychol 19(4):371–379. https://doi.org/10.1207/s15374424jccp1904_9
Rose V, Trembath D, Keen D, Paynter J (2016) The proportion of minimally verbal children with autism spectrum disorder in a community-based early intervention programme. J Intellect Disabil Res 60(5):464–477. https://doi.org/10.1111/jir.12284
Schiltz HK, Clarke E, Rosen N, De La Rosa SG, Masjedi N, Christopher K, Lord C (2023) A longitudinal mixed-methods characterization of family support from adolescence to young adulthood in autism and other developmental disabilities. J Autism Dev Disord 1–17. https://doi.org/10.1007/s10803-023-06070-y
Seymour M, Giallo R, Wood CE (2017) The psychological and physical health of fathers of children with Autism Spectrum Disorder compared to fathers of children with long-term disabilities and fathers of children without disabilities. Res Dev Disabil 69:8–17. https://doi.org/10.1016/j.ridd.2017.07.018
Siller M, Sigman M (2002) The behaviors of parents of children with autism predict the subsequent development of their children’s communication. J Autism Dev Disord 32:77–89. https://doi-org.proxy.bnl .lu/10.1023/A:1014884404276
Siyambalapitiya S, Paynter J, Nair VK, Reuterskiöld C, Tucker M, Trembath D (2022) Longitudinal social and communication outcomes in children with autism raised in bi/multilingual environments. J Autism Dev Disord 52(1):339–348. https://doi.org/10.1007/s10803-021-04940-x
Stewart M, McGillivray JA, Forbes D, Austin DW (2017) Parenting a child with an autism spectrum disorder: a review of parent mental health and its relationship to a trauma-based conceptualisation. Adv Mental Health 15(1):4–14. https://doi.org/10.1080/18387357.2015.1133075
Topp CW, Østergaard SD, Søndergaard S, Bech P (2015) The WHO-5 Well-Being Index: a systematic review of the literature. Psychother Psychosom 84(3):167–176. https://doi.org/10.1159/000376585
Uljarević M, Katsos N, Hudry K, Gibson JL (2016) Practitioner Review: Multilingualism and neurodevelopmental disorders–an overview of recent research and discussion of clinical implications. J Child Psychol Psychiatry 57(11):1205–1217. https://doi.org/10.1111/jcpp.12596
Valicenti-McDermott M, Tarshis N, Schouls M, Galdston M, Hottinger K, Seijo R, Shulman L, Shinnar S (2012) Language differences between monolingual English and bilingual English-Spanish young children with autism spectrum disorders. J Child Neurol 28(7):945–948. https://doi.org/10.1177/0883073812453204
Van Heijst BF, Geurts HM (2015) Quality of life in autism across the lifespan: A meta-analysis. Autism 19(2):158–167. https://doi.org/10.1177/1362361313517053
Vasilopoulou E, Nisbet J (2016) The quality of life of parents of children with autism spectrum disorder: A systematic review. Res Autism Spectr Disorders 23:36–49. https://doi.org/10.1016/j.rasd.2015.11.008
Weiss MJ (2002) Hardiness and social support as predictors of stress in mothers of typical children, children with autism, and children with mental retardation. Autism 6(1):115–130. https://doi.org/10.1177/1362361302006001009
Weiss JA, Cappadocia MC, MacMullin JA, Viecili M, Lunsky Y (2012) The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism 16(3):261–274. https://doi.org/10.1177/1362361311422708
Wharton RH, Levine K, Miller E, Breslau J, Greenspan SI (2000) Children with special needs in bilingual families: A developmental approach to language recommendations. In S. I. Greenspan & S. Wieder (Eds.), The interdisciplinary council on developmental and learning disorders clinical practice guidelines (pp. 141–151). ICDL
World Health Organisation (1998a) Well-being Measures in Primary Health Care/The Depcare Project. WHO Regional Office for Europe: Copenhagen
World Health Organization (1998b) Programme on mental health: WHOQOL user manual (No. WHO/HIS/HSI Rev. 2012.03). World Health Organization
You HK, Rosenkoetter SE (2014) Listening to Korean immigrant mothers: Meanings of raising a child with a disability. Multiple Voices Ethnically Diverse Except Learners 14(1):30–41. https://doi.org/10.56829/muvo.14.1.b430336136001326
Yu B (2013) Issues in bilingualism and heritage language maintenance: Perspectives of minority-language mothers of children with autism spectrum disorders. Am J Speech-Language Pathol 22(1):10–24. https://doi.org/10.1044/1058-0360(2012/10-0078)
Yu B (2016) Bilingualism as conceptualized and bilingualism as lived: A critical examination of the monolingual socialization of a child with autism in a bilingual family. J Autism Dev Disord 46(2):424–435. https://doi.org/10.1007/s10803-015-2625-0

The authors declare no competing interests.

Download PDF

Version 1

posted

You are reading this latest preprint version

Language(s) in Autism: Adult Children- and Parent-Reports on the Relationship between Language Use, Family Functioning, and Mental Health

Status:

Version 1

Abstract

Figures

Introduction

Language use and autism

Multilingualism and Family Functioning

Mental Health and Quality of Life in Autism

Parent Mental Health and Parenting

The Present Study

Methods

Procedure

Participants

Instruments and Measures

Questionnaire on Socio-Demographic Data

Social responsiveness, as an index for autistic traits

Language and family culture

Family Functioning

Mental Health

Quality of life

Results

Language use preferences, actual use, and reasons for mono- or multilingualism

Use of mother tongues, mental health, quality of life, and mental load

Family Functioning across groups

Identifying predictors for family functioning

Table 3

Discussion

Preferences in language use

Use of several languages and mother tongues

Mental health, quality of life in autism

Family functioning and its predictors

Limitations

Implications and Conclusion

References

Additional Declarations

Status:

Version 1