The majority of the identified 32 studies were published between 2016 and 2018 (n = 19), followed by studies published between 2010 and 2015 (n = 12). One study was published between 2000 and 2009 (n = 1). The majority of the studies were conducted in the USA (n = 25), while seven studies were conducted in the UK. A total of 5602 parents (81 fathers and 330 mothers), seven other family members, and a total of 5363 individuals with autism participated across 27 qualitative studies (e.g., ethnography, case study, interview, narrative inquiry), one quantitative (survey) study, three mixed methods studies, and one study with unspecified method. The sample size of participants is skewed by the paper by Benevides et al. (2016) in which they report the findings of statistical analysis within data sets from the National Survey of Children With Special Health Care Needs in the USA. This sample included 5178 participants, and no information about the gender of the parents was provided.
In relation to the sample of the family members, mothers and fathers participated in 13 studies, only mothers participated in 9 of the studies, only fathers in 2 of the studies, and parents and other family members (e.g., siblings, cousin, grandmother) participated in 5 studies. In 3 studies the gender of the parents was not specified. In terms of ethnicity and cultural background, participants described themselves as ‘African American’ in 2 studies, ‘Afro-Caribbean’ in 1 study, ‘Asian American’ in 3 studies, ‘Asian Indian’ in 1 study, ‘Black’ in 3 studies, ‘Chinese’ in 1 study, ‘Hispanic’ in 2 studies, ‘Korean’ in 1 study, ‘Latino/a’ in 2 studies, ‘Mexican’ in 2 studies, ‘South Asian’ in 5 studies, and ‘Somali’ in 5 studies, and in 4 studies the ethnicity was not specified. In 16 studies parents identified themselves as immigrants and in 2 studies as migrants.
The range of the sample with the individuals with autism ranged from 1 to 10 (n = 10 studies), 20–60 (n = 3 studies), and in one study the sample size was 5178 (Benevides et al. 2016). The individuals with autism ranged in age from 0 to 23 years old, and the majority were under 18 years old. In relation to gender, the individuals were boys and girls in 11 studies, boys in 12 studies and only girls in 1 study, while in 8 studies the gender was not specified. In relation to autism diagnosis, parents reported the diagnosis of their children as ‘ASD’, ‘autism’, ‘Autistic disorder’, ‘Asperger’s Syndrome’, ‘High-functioning autism’, ‘PDD’, or ‘PDD-NOS’.
Following the extraction of the data, all authors read the full papers. The authors identified and discussed initial themes related specifically to the purpose of the review. Coding consistency was ensured by all authors agreeing on the themes and by one author completing a second round of coding. Four key themes were identified in the analysis of the 32 papers included in this scoping review: (a) knowledge and beliefs about autism and their impact on the family; (b) autism and family life; (c) family experiences of accessing services and support, and parents’ needs, and (d) multilanguage. These broad themes were furthermore divided into a number of sub-themes (see Table 2).
Theme 1: Knowledge and Beliefs About Autism and Their Impact on the Family
Lack of Knowledge Among Parents and in the Community
A common theme in many of the papers was a lack of knowledge among parents about autism prior to their children’s diagnosis (e.g., Fox et al. 2017; Ijalba 2016). In the USA, a quantitative study of parent knowledge and perceptions of autism across ethnic groups, Ratto et al. (2016) found that Latina mothers had significantly less knowledge of autism than white mothers, even after controlling for education. Huang and Zhou (2016) also reported that out of the Chinese families they interviewed in their USA study, almost all viewed autism as ‘a temporary and transient state of being that reflected delays in a particular developmental stage, rather than a disorder that causes global and far-reaching delays in the child’s cognitive, adaptive, and social-emotional development’ (p. 64). Parents furthermore found symptoms confusing and were uncertain about the implications of the condition. Confusion about autism was discussed by Selman et al. (2018) and Fox et al. (2017) in their study of UK Somali families, who struggled to categorize and understand autism, often noting the perception that autism does not exist in Somalia. The parents received conflicting messages from their own community, who also sometimes suspected that the parents themselves had caused their children’s autism. This combined with the general lack of understanding of autism in the community and stigma around disability and mental illness led to frequent stereotyping and othering of parents of children with autism.
Lack of knowledge of autism in the community, resulting in criticism of parents for having caused the condition, and subsequent experiences of isolation and stigma were described in several papers and in relation to a range of CLD communities, including the UK Somali community (Fox et al. 2017; Hussein et al. 2019), the African American community (Burkett et al. 2015; Lovelace et al. 2018), African Immigrant mothers in the UK (Munroe et al. 2016), Asian Indian families in the USA (Zechella and Raval 2016), and Hispanic families in the USA (Cohen and Miguel 2018; DuBay et al. 2018; Ijalba 2016). However, these sometimes coexisted with other responses. DuBay et al. (2018) for example described that while some extended families rejected the diagnosis, others were very supportive. Similarly, Fox et al. (2017) reported that while some of the UK Somali parents in their study avoided contact with neighbours and friends, others talked openly and with pride about their children, and this was to some extent related to their own stage of acceptance and concerns about stigma. The lack of understanding and awareness of autism in the UK Somali community was described in Hussein et al. (2019) as a reason for parents being insulted by family and community members. However, at the same time, some parents rejected this and refused to hide their children from the community.
When trying to understand the cause of their children’s autism, families drew on a range of religious or cultural explanations. This was common across several of the communities described in the papers. Ijalba’s (2016) study of Hispanic immigrant mothers identified traumatic events, unexplained fear, and the mothers’ own sadness during their pregnancy as common explanatory factors, and these were particularly prevalent among mothers who did not have legal permanent residency or lacked support from extended family. Ijalba (2015) also described other external factors perceived by Hispanic mothers to have caused autism, including Quechua traditional beliefs about wind sickness and Latin American folk beliefs about fright and hurtful gazes.
In Jegatheesan (2011) and Jegatheesan et al. (2010a, 2010b) study of South Asian Muslim immigrants in the USA, parents interpreted the meaning of having and raising a child with autism through their faith, and described their child with autism as a gift from Allah, and they themselves as ‘chosen’ for the task of raising the child. Similarly, the UK Somali parents in Hussein et al.’s (2019) study interpreted their child’s autism as the will of Allah and as a test that they would later be rewarded for having accomplished. In addition, some of them believed that autism was the result of a jinn entering the child’s body.
The Asian American immigrant parents in Wang and West’s (2016) study also invoked a range of explanations when trying to find the cause for their children’s autism, for example having cooked baby food in the microwave, the child suffering a fall where ‘Chi’ had been leaked, or the mother violating a pregnancy taboo. In addition, mothers cited environmental and lifestyle factors and fathers’ diet, genetic factors, the environment, vaccine injections, and modern technology. Vaccines were also mentioned by the parents in Hussein et al. (2019) and Cohen and Miguel (2018) as a possible cause of autism, with the former also mentioning a lack of sun and vitamin D and the latter genes and family history. The idea that autism was related to maternal behaviour during pregnancy was common in the studies. The families of two of the African American mothers in Lovelace et al.’s (2018) study had blamed their children’s autism on the mothers taking drugs or drinking while pregnant, although the mothers denied this. Gilligan’s (2013) study of South Asian Muslim mothers in Bradford, UK, had been told by their networks that autism derived from their behaviour or diet during pregnancy. Similarly, Jegatheesan et al.’s (2010a) Somali parents in the USA both searched for a medical diagnosis and listened to their relatives, who explained the children’s autism with the mother’s health or the consumption of prohibited foods during pregnancy and a lack of adherence to religious practices.
As this shows, participants provided a range of explanatory factors, some based on their faith or spiritual convictions, and others on their beliefs about the environment and their own behaviours. In some cases, parents differed from the extended family and community in their explanatory models, as described above by Lovelace et al. (2018), and sometimes parents invoked different models simultaneously. Munroe et al. (2016) for example showed that the three African immigrant mothers in her UK study to some degree drew upon African cultural beliefs, but also ‘appeared to disagree with the majority of these’ (p. 811). The mother who had most recently migrated particularly worried that autism had been caused by a curse and sent money to Africa for ‘sacrifices’ to stop it. However, the mothers generally rejected the common perception in the African community that their sons were ‘mad’, ‘possessed’, or naughty and adhered to the ‘new explanation’—autism, which appeared to protect them from feeling helpless and gave them some power over their situation. Nevertheless, the contradictions between this model and the traditional African beliefs of their community led to painful conflicts within their cultural identity and feelings of marginalization from both cultures.
The Impact of Beliefs on Parents’ Actions and Coping
In addition to identifying lack of knowledge and a range of beliefs about autism, the papers showed a strong link between the parents’ knowledge and beliefs and their actions. For example, Luong et al. (2009) described how South Asian parents in the USA relied on faith to cope with their children’s condition and used religious practice to provide them with hope and sense of perspective. Jegatheesan et al. (2010a) mentioned that parents drew on elders in their choice and use of folk treatments and furthermore believed that their child’s condition could be stabilized by religious and dietary practices. Jegatheesan (2011) also found that parents drew on their religion when arguing for a full inclusion of the children in family and community activities.
Parental beliefs about disability held by the Hispanic mothers in Ijalba’s (2015) study also influenced how they engaged with and participated in their children’s education. One mother, for example, kept her child home from a school summer programme; another often kept her daughter home from school all together, as she believed the protective environment at home was better for her. Finally, Huang and Zhou (2016) showed that the level of difficulty and stress experienced by the Chinese parents in their study depended on the parents’ level of acceptance of their child’s diagnosis, with those who had low acceptance levels experiencing more difficulties with the demands of their child. This shows the importance of acknowledging the processual nature of family approaches and the diverse impact of autism on family lives.
Theme 2: Autism and Family Life
Stages of Acceptance
Many of the families discussed in the papers described a sense of shock when their children received a diagnosis of autism (e.g., Baker 2017; Jegatheesan et al. 2010a), with some experiencing significant subsequent isolation (Huang and Zhou 2016; Munroe et al. 2016). Fox et al. (2017) noted that many of their participants were unfamiliar with the word autism and therefore were left feeling confused upon getting the diagnosis. Illustrating the dynamic nature of family responses to autism, Luong et al. (2009) identified a range of phases, which their Southeast Asian families went through. This included denial and passive coping, empowerment, redirecting energy, shifting of focus, rearranging lives and relationships, changed expectations, social withdrawal, spiritual coping, and acceptance. This gradual acceptance and development of coping mechanisms was found in several of the studies. The African immigrant mothers in Munroe et al.’s (2016) study initially went through a phase of acquiring information about autism through the internet and by talking to professionals. Through this they came to an agreement with the diagnosis, which offered a framework for understanding their children and how to help them. The Korean Immigrant mothers in You and Rosenkoetter’s (2014) study had found it difficult to accept their children’s condition at first, but later began to adjust their maternal role to address the specific needs of their children. This included re-evaluating their role as a mother (with some giving up their jobs to look after their child) and their priorities as a family. Similarly, the Asian Indian families in Zechella and Raval’s (2016) study described how their children’s disabilities had led them to change their perspectives on life in general and their particular role as parents and advocates for their children.
Parental self-sacrifice was identified as a major theme in Huang and Zhou’s (2016) study of Chinese families of children with autism, and this was particularly prevalent in families with more traditional values. Wang and West (2016) also found that the Asian American Immigrant mothers in their study put their careers aside to look after their children, but not always without grievance. The mothers tended to employ emotion-focused coping and religious coping, whereas fathers tended to use rationality-focused coping strategies, e.g., searching for related knowledge and going on a journey of hope and illustrating the importance of gender-specific coping mechanisms and family dynamics.
Family Dynamics and the Involvement of Extended Family
Families varied in the extent to which they drew on extended families and community members for support, and this depended on the wider understanding of autism in the community. The South Asian Muslim immigrant families described by Jegatheesan et al. (2010a) did not view their extended families as a resource for coping with the diagnosis and refrained from openly talking about their emotions because they believed such talk could negatively impact on their extended families. Huang and Zhou (2016) linked the isolation and deterioration in social relationships experienced by several of the Chinese families in their study to their fear of ‘loosing face’. Fox et al. (2017) and Selman et al. (2018) described the negative perceptions of mental illness within the Somali community as a source of social isolation and exclusion for the families, due to neighbours or friends avoiding their company and parents self-isolating to protect their children. Selman et al. (2018) furthermore described how parents engaged in a complex negotiation around the diagnosis of autism, with fathers particularly struggling to accept it. Wang and West (2016) also mentioned the particular difficulties of fathers in accepting the diagnosis, with some being in denial and therefore not telling their families about it.
Relationships between fathers and mothers were described in some of the studies, including Kim and Kim (2017) who found that linguistic barriers, stereotyping, and contentious gender roles led to marital conflicts and instability, as the Korean immigrant mothers they studied struggled to raise their children with disabilities by themselves at home. Conversely, Zechella and Raval’s (2016) Asian Indian families considered their relationships to have been strengthened by them focusing on their child rather than their own differences. Finally, the relationship with siblings was discussed in a few of the papers, most significantly in Sage and Jegatheesan (2010) who presented two contrasting examples of how a European American and Asian American family explained autism to their typically developing sibling and how this consequently impacted on the siblings understanding the interactions between the two.
Theme 3: Family Experiences of Accessing Services and Support, and Parents’ Needs
Access to Support
Hannon et al. (2018) identified three key reasons for differences in diagnoses between ethnic and racial groups: disparities in access to care, disparities in diagnosis timing, and disparities in the frequency of dual diagnosis. In relation to the second reason—timing—several of the papers reviewed mentioned that CLD groups experience delays in diagnosis and have greater difficulties obtaining care than majority ethnic families (e.g., Benevides et al. 2016; Burkett et al. 2015). One explanation for delayed diagnosis provided in the articles was the lack of knowledge of families and their beliefs about disability (Luong et al. 2009). As noted by Fox et al. (2017):
Community attitudes towards mental illness, challenging behaviours and disability, combined with the lack of vocabulary to describe and explain autism, made acceptance extremely challenging. It was therefore difficult for parents to recognise that their child’s disability was characteristic of autism. These attitudes also prevented parents from sharing their concerns about their child, meaning that assessment and diagnosis were sometimes delayed (p. 309).
Furthermore, it was common for parents to approach members of their families first, rather than seek professional advice (Burkett et al. 2015; Fox et al. 2017; Luong et al. 2009), and these often advised them not to be concerned (Fox et al. 2017; Jegatheesan et al. 2010a).
Lack of familiarity with their rights as parents of a child with a disability and the system in general were also identified as reasons for delayed access to services and collaboration with professionals (e.g., Jegatheesan et al. 2010a). Fox et al. (2017) found that parents lacked familiarity with the many different systems and that this, combined with their language barriers, contributed to delays in accessing support for their child. The UK Somali parents in their study furthermore displayed a ‘widespread concern that their child would be taken away from them if they were seen to be having difficulty coping with the demands of raising a child with autism’ (p. 312). Hussein et al. (2019) similarly described a general distrust in Western Medicine and medical explanations among Somali families in the UK but also identified a move towards combining interventions based on faith with more formal advice from health care professionals.
In addition to such family-based explanations, some of the studies acknowledged that these worked in parallel with more systemic inequalities to explain delayed diagnosis. Burkett et al. (2015) identified a combination of diagnostic bias, poor access to health care, child presentation, and family symptom interpretation as cultural influences on diagnostic delays and treatment in urban African American families. Illustrating how these factors worked in tandem, they described how the families in the study engaged in ‘family protective care’, practices that promoted the children’s independence, treated them as ‘normal’ to ensure their independence and prevent them from experiencing discrimination, and taught them to be watchful. They argued that these practices in turn led to higher functional skills in African American children with autism and contributed to diagnostic delays. Potentially supporting this, Hannon (2017) mentioned that Black American children were two and a half times less likely to be diagnosed with autism on their first visit to speciality care than white American Children.
Ratto et al. (2016) also invoked a combination of family and systemic factors to explain diagnostic delays. While their study showed no major differences in the time when Latina and low SES mothers began to develop concerns about their child, they argued that delays in diagnosis could be caused by the difficulty the mothers had in navigating the system, the way providers and health care professionals responded to them, and that the mothers described their concerns differently than white mothers, resulting in professionals not considering autism as a potential diagnosis. Finally, Benevides et al. (2016) found that families from different ethnic groups varied in their perception of treatment needs, with caregivers of minority children significantly less likely than white non-Hispanic children to report a perceived need for prescription and medication, Black non-Hispanic children significantly less likely to report a need for child and family mental health care than white non-Hispanic children, and English-speaking Hispanic children and black non-Hispanic children significantly more likely than white non-Hispanic children to report a need for therapy services. Benevides et al. (2016) linked parental beliefs about the perceived need for services, their help-seeking behaviour, and the interventions that their children with autism receive, and based on this, they argued that practitioners need to be aware of the multiple reasons why families may not pursue treatments and that families from different racial and ethnic backgrounds may need additional communication and support in making treatment decisions for their children with autism.
Experiences of the Services Provided
In addition to the question of accessing services, the papers also found that families from CLD groups reported a number of challenges in the services they received. The African American mothers in Lovelace et al.’s (2018) study had all experienced feeling discriminated against because of their race in one or more interactions with service providers. Communication was a key consideration in the review studies, with language barriers described as significantly impeding access to support and communication with service providers (DuBay et al. 2018; Hussein et al. 2019; Luong et al. 2009). Fox et al. (2017) noted that even proficient English speakers reported difficulties in understanding the words used by service providers. This was also found in You and Rosenkoetter’s (2014) study, where the Korean American mothers identified the special needs terminology and medical jargon as barriers to their communication with educators and specialists. Jegatheesan et al. (2010a) furthermore described how the South Asian Muslim immigrant families in their study had experienced that therapists had been insensitive in their communication and interaction, by showing a lack of trust in the parents’ own reporting, a lack of interest in their background, and by using unfamiliar jargon. They also reported ‘cultural clashes and mismatches’ in relation to the use of multiple languages in the home and the daily lifestyle of the families, which included many extended family members, friends, and neighbours. Therefore, the families expressed a preference for professionals of a similar cultural and linguistic background. In addition, Jegatheesan et al. (2010b) found that the parents felt disturbed by the professionals’ emphasis on the children’s deficits, which they contrasted with their own more positive vision for the future of their children.
DuBay et al. (2018) furthermore identified a difference in the experiences of families of different types of services. The Latino caregivers in their study had felt more included in individual private treatments but discouraged from being present in school-based interventions, resulting in them not learning from the strategies in the latter. The authors questioned the quality of the providers employed by different agencies and ‘whether less capable or motivated providers are at times assigned to Latino Spanish-speaking families whose limited English fluency may prohibit formal complaint’ (p. 1636). Further acknowledging inequalities in access to quality services, Lovelace et al. (2018) mentions that in the US context ‘nice programmes’ are often in the suburban areas and that urban families have difficulty in accessing them. Gilligan (2013) also calls for recognition that ‘in Britain and elsewhere, support groups for parents may be clustered in white, middle-class areas and may offer services that many ethnic minority parents will find difficult to access’ (p. 405).
In summary, the current research on the experience of CLD families of children with autism highlighted that these families need intervention programmes that are sensitive to linguistic and cultural diversity and that provide information that is appropriate for culturally and linguistically diverse groups. The families needed practitioners to take into account the lack of bilingual and culturally sensitive programmes, to review the information people may be getting in their communities (Lovelace et al. 2018), the stigma they may experience (Munroe et al. 2016), their cultural and religious explanatory models and values (Cohen and Miguel 2018; Gilligan 2013; Hussein et al. 2019; Ijalba 2015), and coping styles (Huang and Zhou 2016). It also appears that there is a need for a more individualized approach because while clinicians and professionals were urged to take culture into account and develop programmes with the input of cultural communities (Munroe et al. 2016), it was also noted that some parents expressed willingness to set aside their cultural beliefs, if they thought this would benefit their children (DuBay et al. 2018; Perepa 2014), as clearly stated by a mother in DuBay et al. (2018) study: ‘I’m practical. If I have to leave my culture aside, I will leave it, my son is first… My son needs to learn that, so I’m teaching my son to point... My children come first before my culture’ (p. 1630).
Support Groups and Information About Culturally Diverse Families with Autism
Several of the papers mentioned the benefits of support groups consisting of other parents and families with autism (Hannon et al. 2018; Zechella and Raval 2016). Selman et al.’s (2018) and Fox et al.’s (2017) UK Somali families identified structured training courses on autism and parent support groups especially supportive. DuBay et al. (2018) furthermore mentioned that support groups were particularly important when the community was perceived as non-supportive, as in the case of some of the Hispanic migrant families in their study, who avoided sharing their children’s diagnosis with family members and sought social support elsewhere, including support groups with other Latino families of children with autism.
The parents in Jegatheesan et al.’s (2010a) study suggested that support for families could be provided by cultural community centres that are ‘actively involved in ensuring the well-being of their members in the US’ (p. 808). Several of them however were not comfortable with support groups, as they found them ‘alien’ and because they had experienced language barriers, felt stressed and embarrassed to speak in mainstream groups, and ‘felt lost and knew no one’ (p. 806). Mothers particularly felt uncomfortable talking about feelings in front of male strangers and expressed a preference for groups divided by gender. In addition, they had found it difficult to be in groups with people who were at different levels of their understanding of autism. Luong et al. (2009) described how South Asian Parents did not find support groups helpful either, because ‘I did not want to hear about other people’s problems, and I did not want to burden them with mine’ (p. 227). Due to the cultural stigma around mental illness, they had felt safer at home and alone. Finally, and further illustrating the complexity of matching people with support groups, one of Lovelace et al.’s (2018) participants described feeling alienated from a support group, due to being a single mother within a group predominantly composed of married couples: ‘I’m like your struggles are not my struggles at all. That’s how I felt. So, I felt out of place even at support groups’ (p. 10). Overall, families needed structured training courses but felt ambivalent about participation in support groups.
Parents have different needs in caring for a child with autism. This includes differing needs in relation to information, family and social support, financial support, explaining to others, childcare, professional support, and community services (Bailey and Simeonsson 1988), respite care, information about support services and access to these services, social acceptance, emotional support, and funding (Hodgetts et al. 2015). In the current scoping review, Benevides et al. (2016) extensively investigated the needs of CLD families in relation to medical, therapeutic, and family support services. The findings showed that caregivers of Hispanic children reported less need for prescription medications compared with caregivers of white non-Hispanic children with autism, caregivers of black non-Hispanic children with autism reported less need for prescription medications, and for child and family mental health services than caregivers of white non-Hispanic children. English-speaking Hispanic caregivers and black non-Hispanic caregivers reported greater need for occupational, speech, and physical therapy than white non-Hispanic caregivers, and no racial or ethnic differences were found in perceived need for specialty medical care or respite care. Therefore, they concluded that caregivers of children with autism from CLD groups may have different perceptions of the need for various types of care and these perceptions may impact on how they prioritize and seek care, independent of their child’s specific needs. DuBay et al. (2018) also examined the unmet needs of Latino parents in relation to service provision. In this study, Latino parents highlighted the need to be involved to some extent in therapy sessions with their children, to have good communication with service providers, and to receive information for working with their children at home. Parents expressed a need for various types of support including class or therapy observations, hands-on practice, or group workshops for families. In relation to service provision, Latino parents expressed the need to work with bilingual or multilingual service providers who have professional skills and are highly motivated to have good and frequent communication with them, who are willing to build relationships and provide parental support. Similarly, parents from the Somali community in the UK also expressed the need for good communication with the child’s school and assistance with language to overcome the language barrier as well as the need for support to access the education and social services (Fox et al. 2017) and the need to work in partnership with practitioners who are well informed about bilingualism, second language learning, and maintenance of heritage language (Yu 2013). In addition, Chinese parents also expressed the need to have access to interventions, which are available in their native language (Yu 2013).
Theme 4: Multilanguage
Family Perceptions of Multilanguage
Families generally found that learning two or more languages was important for their children with autism, as this was seen as a key way to maintain their heritage, religion, community, or family relations (Jegatheesan 2011; Kim and Roberti 2014). Jegatheesan et al.’s (2010b) study participants stated that being able to speak their native language was important for communicating with non-English-speaking family members, for example grandparents who often provided child care, and for being part of the family’s social life, through which the children learned important cultural values. Full inclusion in the family was not considered to be accomplishable without immersion in multiple languages. Yu (2013) found that bilingual Chinese/English-speaking immigrant mothers of children with autism described Chinese language as important for preserving their heritage and cultural identity, to instil pride, and to help the children gain an advantage on the global job market. In addition, they expressed that they would feel ‘some degree of loss if the children never learned it’ (p. 16). The last element illustrates the emotional element of language, which was described in several of the reviewed studies, with parents stating that they preferred their native language when showing affection and singing to their children (Baker 2017; Hampton et al. 2017). Garcia y et al. (2012) parents described speaking only in English as a great loss to the families, resulting in emotional distancing, being lost for words, and detachment from extended family and community.
Despite the benefits of learning multiple languages as described by the families, the loss experienced when speaking only English, and the lack of research to support the case for a one-language only policy, many of the parents worried that learning more than one language would delay their children’s speech (Hampton et al. 2017), confuse the children (Baker 2017; Hampton et al. 2017; Ijalba 2015; Yu 2013), or negatively interact with autism traits, such as not reacting well to changes or transitions (Hampton et al. 2017). In one study, some parents however also thought that bilingualism provided opportunities to foster abilities that children with autism might find difficult, suggesting that much depended on the general verbal skills and level of functioning of the children (Hampton et al. 2017).
Due to the concerns about multilanguage being confusing for children with autism, the majority of the participants in Baker’s (2017) study supported the idea behind a one-language approach, and other studies similarly described families adopting an English-only approach. In Yu’s (2013) study for example this was described as an instrumental approach: ‘A clear priority for all of the parents in the study was to address the perceived life barriers that they associated with the autistic condition. If the heritage language was perceived to be an obstacle to that goal, then it was minimized or dropped’ (p. 16).
Families Views About Professional Perceptions of Multilanguage
The confusion and apparent contradictions in parents’ perception of multilingualism was to a large degree related to the lack of guidance from professionals on the matter (Baker 2017), or their direct advice to raise the children mono-lingually (Hampton et al. 2017; Jegatheesan et al. 2010a; Garcia y et al. 2012) even when the parents themselves were not proficient in English. In Ijalba’s (2016) study of 22 Hispanic Immigrant mothers, 13 families had been advised to shift to English only, even though 11 of them had at least one parent who was not able to communicate in English and who was the primary caregiver. Jegatheesan (2011) found that professionals often considered the children’s interactions with many relatives and community members, who were often not proficient in English, ‘detrimental to the child’s development’, and warned of the negative impact of using more than one language. This in turn led to parents feeling anxious about professionals finding out about their use of multiple languages at home.
Yu (2013) similarly reported that the most frequently heard advice reported by the Chinese/English speaking immigrant mothers in her study after their child had been diagnosed with autism was to start speaking English with the children as soon as possible. Only two of the parents in the study said they were told positive things about bilingualism and actively encouraged to foster heritage language learning in their children. All of the parents who were advised to speak bilingually were also told to clearly separate the use of the two languages with their children, a practice which is questioned by Yu (2016) as being at odds with the hybrid language practices used by families. In contrast to this, Hampton et al. (2017) found that a substantial amount of the bilingual parents of children with autism in their UK study were told that bilingualism did not present any problem, leading the authors to conclude that: ‘It may be that, in the United Kingdom at least, attitudes of professionals toward bilingualism are becoming more favourable’ (p. 444).
Nevertheless, the papers documented a general lack of interventions and practice material in other languages, and this also led families to choose English for pragmatic reasons (Hampton et al. 2017; Yu 2013). In general, families adopted different strategies depending on the advice they had been given, their own beliefs and their children’s situation. Some differences were identified between parents, for example with parents of children who struggled with language being more worried and with individuals feeling different towards language at different times and under different circumstances. This emphasizes the importance of considering language in context and of acknowledging the broad variety of children with autism, making generic recommendations difficult (Baker 2017).