3.3.a. Barriers to accessing adequate services.

Fourteen of the included studies identified barriers to accessing adequate services [17, 19, 30, 32, 33, 35, 38, 41, 45–49, 51]. This included difficulty accessing transportation to services [19, 33, 35, 47, 49, 51], long waitlists [19, 30, 32, 38, 45, 49, 51], the disbursement and fragmentation of services [19, 51], and acquiring information on service locations and availability [19, 33, 35, 38, 45, 49, 51]. While waiting for services for their child, the immigrant participants in Millau and colleagues’ study accessed less external support than the Canadian-born participants, largely because the Canadian caregivers had more contacts and knowledge about available services [41]. Some caregivers also identified the requirement to complete excessive and complex paperwork as a challenge in accessing services [45, 49, 51].

The barriers to accessing adequate services included services not providing emotional support [19], a decrease in quality and quantity of services following the end of specialized early intervention [46], and providers’ limited autism knowledge [17, 19, 32]. Transition points between services, such as a child moving from early intervention to school, also created difficulties due to poor communication between organizations, limited or poor quality of services, and the child not being prepared [46]. Additionally, some participants disagreed with the types of language or labels used by Canadian professionals, resulting in contention between these groups. For example, some of the caregivers in Pondé and Rousseau’s study rejected the notion that their child had any “problem” and instead felt the issue was the lack of acceptance of their children’s differences [42]. They also felt that the professionals sending their children for assessments due to their functioning at school was intrusive [42]. This is significant in that the way families conceptualize and approach autism in their daily lives influences their pursuit of therapies [43].

Dissatisfaction with their child’s education was also addressed by some caregivers across studies [32, 38, 46, 48]. Poor communication between the school and early intervention services as well as limited staff presented barriers for participants in Rivard and colleagues’ study [46]. Some participants felt the staff at their child’s school lacked proper training and protocols and received requests to pick their child up from school during the day [32, 38], resulting in some having to leave their jobs [32]. Additionally, some participants in Shanmugarajah and colleagues’ study felt that the education system overall was not meeting the needs of their child [48].

3.3.b. Barriers resulting from immigration.

Barriers related to immigration were the most common themes observed, emerging in 14 of the included studies [17–20, 31–33, 35, 37, 38, 48–51]. They included difficulties due to cultural differences [18, 20, 31, 37, 48, 50], as well as language or communication barriers between caregivers and service providers [17–20, 32, 33, 35, 37, 38, 48–51]. Moreover, although all participants included in Rivard and colleagues’ study were fluent in English or French, 14.7% of the participants felt that that other caregivers in their position should prioritize learning their host country’s language [45], which suggests that even though their participants did not personally experience language barriers, they recognize how such a barrier could pose problems for newcomer caregivers seeking autism services.

3.3.c. Personal barriers.

Some of the studies indicated that their participants encountered “personal barriers,” meaning internal experiences or events concerned largely with caregiver mental health that may not be apparent to anyone but the caregivers themselves. These were often fueled by external obstacles such as struggling to access services or being in a new environment [37, 40, 43, 49, 51, 52]. One such barrier was the experience of stress [37, 40, 49]. Participants in Pondé and colleagues’ study noted feeling pressure from their child’s school and healthcare professionals to meet their expectations of everything they must do to support their child, as well as from the demands their child may place on them, such as resistance to completing different tasks [43]. Caregivers also experienced emotional strain and difficulties [17, 30, 33, 37–39, 43, 49, 51], including depression [42, 49, 51] and guilt [17, 37, 43, 49]. Weiss and colleagues found that immigrant mothers of autistic children in Canada had a higher likelihood of feeling unable to meet their child’s needs than mothers from other demographic groups [52].

3.3.d. Social barriers.

Social barriers, such as stigma and discrimination, were identified in 14 studies [17–19, 30–32, 34, 38, 41, 45, 48–51]. Caregivers experienced discrimination based on their minority status (including having an accent) [31, 49, 50], and others felt discriminated against or not accepted due to their child’s disability [30, 31, 51]. Moreover, some caregivers came from cultures wherein stigma exists toward people with developmental disabilities [19, 34, 37, 38, 45, 48, 49, 51]. Others were afraid their child would encounter stigma due to being autistic [17, 32, 37, 45], or that they themselves would be stigmatized [32, 45]. Some studies noted autistic children being excluded from school [17, 18].

Many participants also experienced a lack of social support [18, 19, 34, 41, 45, 48, 49, 51]. Reasons for this included immigrating away from their social networks [18, 19, 45, 48, 49, 51], their spouse working outside of the home to support their family [19], immigrating to Canada prior to their spouse [34], and family or community members not understanding or accepting autism [45, 48, 49]. Some caregivers did not disclose their situation to their extended families [51]. Others reported difficulties trusting service providers [18, 37, 49].

3.3.e. Financial barriers.

Financial barriers were identified by participants in 9 studies [17, 19, 31, 32, 35, 45, 48, 49, 51]. These were perpetuated by a lack of government funding [32, 35, 45, 48, 51], service costs [17, 19, 38, 49, 51], as well as unemployment within the family [38, 49, 52]. One participant in Decoteau’s study felt that even though the government funds early intervention services, Somali caregivers do not get access to this funding [31]. Skrinda’s study identified how limited service funding within school boards can also act as a barrier that may prompt families to switch schools [49].

3.3.f. Social/emotional/personal supports as facilitators.

Social facilitators, conceptualized in this review as social and emotional supports that improved caregiving experiences, coping, or quality of life, were identified in 12 studies [17, 32–34, 36, 38, 41, 45, 48–51]. These included having caregiver(s) of autistic children in their social networks [45, 49], and community [17], as well as networking with other caregivers of autistic children [33, 38, 49–51], friends [32, 38, 51], and family [17, 38, 41, 48, 49, 51].

The mobilization of personal resources was also noted as being beneficial to caregivers. One example of a personal resource that facilitated caregiver wellbeing included faith and religion [32–34, 38, 48]. Actively and/or proactively seeking additional information regarding services and supports, as well as information about autism itself [38], was also identified as an activity caregivers used to cope with their child’s diagnosis [32, 33], Additionally, Camard and colleagues explored how immigrant parents took on advocate roles in response to encountering barriers as they navigated their lives with an autistic child [30].

3.3.g. Service personnel-based facilitators and financial facilitators.

Service providers who were especially helpful acted as facilitators in numerous studies [20, 32, 34, 38, 45–49, 51]. Additional facilitators provided by service personnel included access to information [32, 45, 50], access to services prior to diagnosis [45], satisfaction with the availability of services [48, 51], collaboration and communication with parents and other organizations working with the child [46], and satisfaction with the adequacy of services [20, 38, 44, 48]. Some studies also highlighted the positive impact of services that address immigration-specific barriers. For example, interpreter services were identified as helpful or preferential by Rivard and colleagues and Su and colleagues [45, 51]. Participants in Fong and colleagues’ study noted how respect from professionals, which involved taking steps to eliminate service barriers for newcomers, greatly impacted their overall family quality of life [34]. Some participants noted benefits from their service provider sharing their background [35, 37, 48]; one Chinese mother in Lee and Zhu’s study felt her understanding of her autistic son’s situation was enhanced via the enriching conversations she was able to have with her Chinese-Canadian doctor [37], while a participant in Grewal’s study felt that their service provider, also being South Asian, would be more discrete, given their understanding of the stigma around mental health in their community [35]. Government funding was also noted by immigrant caregivers in some studies to facilitate their child’s access to some services [32, 44, 45, 51], as well as funding from other institutional sources [38].

3.3.h. Gender differences.

Lastly, differences between mothers and fathers were identified in five studies [21, 40–42, 45]. For example, Millau and colleagues found that the immigrant fathers were more likely than the Canadian-born fathers to have full-time work and, conversely, less likely to stay home [40]. In terms of how perceptions of autism differed between newcomer mothers and fathers, Pondé and Rousseau found that fathers focused more on the difficulties their child experienced and appeared more unsettled by them than mothers [42]. Millau and colleagues noted differences between mothers and fathers in causal attributions of autism, the proportion that recognized early signs of autism, and the order in which treatments were prioritized [21]. Additionally, when looking at the raw data in the study by Rivard and colleagues, 42.9% of immigrant mothers noted experiencing social isolation compared to 7.7% of included immigrant fathers, and 28.6% of immigrant mothers struggled with denial compared to 7.7% of immigrant fathers [45].

Gender differences were also observed by Millau and colleagues regarding the importance of different subscales of family quality of life, with immigrant fathers ranking disability-related support as being the most important, while immigrant mothers ranked family interaction as most important [41]. Moreover, when comparing the experiences of immigrant caregivers and Canadian-born caregivers, Millau and colleagues found that while both immigrant mothers and fathers’ levels of satisfaction with the family interaction subscale of family quality of life was lower than that of Canadian-born caregivers, the lowest rankings were among immigrant fathers [41].

In summary, studies identified many overlapping barriers and facilitators experienced by newcomer caregivers of autistic children, ranging from those impacting mental health and social wellness to service access and finances. Moreover, differences in the experiences of newcomer mothers and fathers were also identified. Examining these findings further, and the recommendations made within study reports, reveals ways to address gaps in Canadian research on this population.

4.2.a. Lack of refugee studies.

Originally, the research team intended to examine findings on immigrant and refugee caregiving experiences separately, but only the studies by Decoteau and Skrinda included refugee participants [31, 49]. While only 9,200 refugees were resettled in Canada in 2020, this number was likely influenced by the COVID-19 pandemic as 30,100 refugees were resettled in Canada in 2019, or the year prior to the onset of the pandemic [55]. Limited refugee representation in Canadian autism studies could be due to a lack of prevalence of autism among the refugees entering the country, however, this review highlighted additional factors that can influence study participation, such as recruitment strategies, cultural differences in the understanding of (or education around) autism, or caregivers being uncertain of where to access services. Moreover, studies may not be distinguishing refugees separately from minorities, which has been noted in the past [15]. As such, in order to properly ascertain the level of need among refugee caregivers of autistic children, it is worthwhile to conduct future studies that specifically seek out their participation.

4.2.b. Lack of studies on the experiences of fathers.

Another considerable research gap is the lack of research on newcomer fathers acting as caregivers for autistic children. As previously mentioned, none of the included studies focused explicitly on fathers, and in all cases where fathers were included, they were considerably outnumbered by mothers. For example, in Grewal’s study, 87.5% of the participants were mothers [35], in Millau and colleagues’ it was 62.2% [21], and Rivard and colleagues’ it was 61.7% [45]. There are a number of possible reasons for this gap, such as mothers being more likely to leave their jobs to provide full-time care for their developmentally disabled child [19], as well as the way some cultures may influence parental roles; in families following traditional gender roles, fathers may have fewer daily interactions with their children [40]. Even so, the inclusion of fathers and other male caregivers is necessary to both support or refute these reasons, as well as to ensure their support needs are adequately met.

Overall, there is also limited data on the composition of refugee families coming into Canada. This means that, when it comes to this group in particular, a lack of fathers participating in research such as that reviewed in this paper could be due to a lack of fathers within refugee families entering Canada to begin with. Limited information regarding family composition, and by extension the support available to refugee caregivers of autistic children within their own family unit, points to another direction for future research.

4.2.c. Methodology.

The majority of the studies reported qualitative data, namely interviews. While these accounts provide insight into the caregiving experiences of participants, these data are not easily generalizable [10]. This highlights the need to generate further quantitative data examining the barriers, facilitators, and general caregiving experiences encountered by newcomers so as to understand their generalized experiences and needs, consequently assisting with the design of broad-based recommendations. This review also establishes that there is some overlap between qualitative findings across studies in terms of barriers and facilitators, providing a potential starting point in the design of future qualitative or mixed-methods studies.

4.2.d. Representation of Canada’s immigrant population.

To examine how representative the current Canadian literature is of the demographics (in this case, country of origin) of the newcomer population, the percent occurrence of specific country of origin from the studies was compared to data on the place of birth of immigrants who arrived in Canada between 2001–2021 in Fig 2 (based off of a dataset published in 2023 by Statistics Canada, see [53]). There are some limitations with the Canadian dataset selected; the participants in the included studies were both immigrants and refugees, whereas the dataset only includes information on immigrants. Moreover, although the included studies were published as of the year 2000, recent immigrants whose data were collected could have arrived in Canada in the preceding years, whereas the Canadian data sample included has date of arrival beginning at the year 2001. Despite these limitations, the authors chose to offer this comparison to provide a sense of whether certain groups were being over or underrepresented in the literature. The chart demonstrated a high degree of Asian participants in the Canadian literature, which approaches the high proportion of Asian immigrants to Canada; the same was true for European and African immigrants. Meanwhile, immigrants from the Caribbean, Latin America, and North America may be overrepresented in the literature compared to Canadian immigrant population proportions. Finally, immigrants born in the Middle East and South America appeared underrepresented compared to the Canadian population proportions, suggesting more research attention to these groups is especially warranted.