# Introduction

## *Autism*

Autism is a neurodevelopmental condition characterized by social, communicative, and behavioural differences, and strong interests (American Psychiatric Association, 2013). Language, behavioural, and sensory difficulties are commonly experienced by persons on the autism spectrum (Hazen et al., 2014; Magiati et al., 2014; Pickles et al., 2014). In Quebec, Canada, 1.2% of children are diagnosed with autism (Diallo et al., 2018). Autism is becoming increasingly common in Canada and in other countries, potentially due to greater knowledge of autism contributing to greater identification (Diallo et al., 2018; Matson & Kozlowski, 2011; Ouellette-Kuntz et al., 2014; Russell et al., 2022). Autistic people<fnref n="1" /> access healthcare and social services at a higher rate than the general population across the lifespan (Diallo et al., 2018; Zerbo et al., 2019). In addition to visiting emergency departments more often than non-autistic peers (Deavenport-Saman et al., 2016), most autistic children utilize a range of specialized services, such as applied behaviour analysis (ABA) occupational therapy and speech-language therapy (Volden et al., 2015). Autistic adults access medical appointments and mental health services at a greater rate than the general population, and also use specialized services such as vocational support at high rates (Shattuck et al., 2012; Zerbo et al., 2019). Family members or specially trained support persons often play a crucial role in supporting autistic individuals in accessing care (Nicolaidis et al., 2015; Stahmer et al., 2019).

In accessing healthcare and social services, autistic individuals of all ages and their caregivers face barriers, most notably a lack of services (Ghahari et al., 2022; Malik-Soni et al., 2022; Walsh et al., 2020). In many parts of Canada, in 2012, the process to access publicly-funded diagnostic and intervention services was characterized by significant delays, with some families waiting for close to two years for a diagnosis (Québec Ombudsman, 2012; Rivard et al., 2015; Zwaigenbaum et al., 2019). Given these delays, families that have means often pay for private services, for others, it constitutes a financial access barrier (Shepherd & Waddell, 2015).

Beyond these gaps in accessing services, autistic individuals and their families also experience a lack of awareness about available services, difficulty navigating service systems, and inaccessible facilities (Castonguay, 2018; Fong et al., 2022; Lim et al., 2021; Nugent, 2017; Richard et al., 2019; Rivard et al., 2019; Stahmer et al., 2019). For autistic linguistic minorities in rural communities, additional barriers include even longer wait times, limited staff, and a lack of specialized services (Castonguay, 2018; Richard et al., 2019; Stahmer et al., 2019).

A critical challenge across settings is the lack of provider knowledge about autism and available services, which can hinder both diagnosis and service delivery (Ghahari et al., 2022; Lappé et al., 2018; Locke et al., 2020; Malik-Soni et al., 2022; Mason et al., 2019; Nicolaidis et al., 2015; Raymaker et al., 2017; Walsh et al., 2020). Autism-related stigma has been reported as a barrier by multiple authors (Ghahari et al., 2022; Malik-Soni et al., 2022; Mason et al., 2019; Nicolaidis et al., 2015; Raymaker et al., 2017; Walsh et al., 2020). Staffing issues, including high turnover, further contribute to delays in accessing care (Castonguay, 2018; Richard et al., 2019; Rivard et al., 2019; Stahmer et al., 2019).

## *Linguistic Minorities in
				Quebec*

Under the 1969 Official Languages Act, English and French are the two official languages of Canada and its federal government (Government of Canada, 2022). While French is the only official language of Quebec, where 74.8% of the population speaks French as a mother tongue (Statistics Canada, 2022), English is the dominant societal language in the rest of Canada (Bouchard & Desmeules, 2013). Despite French being the majority language in Quebec, the 2021 census reported that 51.7% of Quebec’s population could hold a conversation in English. Among immigrants, this proportion was even higher at 66.6%, compared to 48.9% among non-immigrants. The majority (79.7%) of Quebec residents whose only official language is English resided in Montreal (Auclair et al., 2023). Canadian provinces and territories each have their own system of public healthcare and social services and have further established their own language policies.

The term official language minority or OLM refers to an individual whose first official language differs from the dominant official language in their jurisdiction (Innovation, Science and Economic Development Canada, n.d.; de Moissac & Bowen, 2019). Anglophones in Quebec and Francophones in other parts of Canada are OLMs. Immigrants who are more proficient in the official language not widely spoken in their jurisdiction have also been included in the OLM category (de Moissac & Bowen, 2019; Zanchetta et al., 2012). OLMs often speak the majority language of the area where they live, but they may be more proficient in the minority language and experience language barriers. While immigrants also face language barriers (de Moissac & Bowen, 2019; Kalich et al., 2016; Nash, 2019; Savard et al., 2020), they also encounter additional barriers such as cultural differences, unfamiliarity with the healthcare system, and socioeconomic challenges.

The linguistic landscape described above is also reflected in Quebec’s healthcare sector. In 2016, 98% of all healthcare workers in Quebec spoke French, while over 60% of healthcare workers in Montreal and about 40% in the rest of Quebec could speak English (Statistics Canada, 2021a). Survey findings reveal that, while more than half (55.7%) of the respondents reported being able to communicate in English, language proficiency does not always translate into workplace use. This trend is particularly evident outside of Canada’s major bilingual cities—such as Moncton, Sudbury, and Ottawa for French; and Gatineau, Montreal, and Sherbrooke for English—where only a small number of healthcare workers who spoke the minority language actively used it in their professional interactions (Statistics Canada, 2021a).

In Quebec, the Act respecting the governance of the health and social services system, CQLR c G-1.021, mandates that public institutions develop a health and social services access program for their English-speaking clients. Under this legislation, English-speaking individuals have the right to receive health and social services in English, subject to the resources and organizational capacity of the institutions providing them. However, despite these provisions, concerns remain about recent language policies potentially restricting English healthcare services in Quebec (Butler et al., 2021). A recent report highlights ongoing healthcare access issues for English-speaking Quebecers (Community Health and Social Services Network [CHSSN], 2023). The number of respondents stating that they were totally satisfied with the availability of health and social services in English was below a third (23% in 2019 and 27% in 2023, question Q23). Furthermore, the proportion of Anglophones who feel comfortable requesting services in English is decreasing from 76% in 2019 to 69% in 2023. This discomfort was often attributed to factors such as negative staff attitudes, the belief that services would be better in French, or concerns that requesting services in English could result in delays. The proportion of Anglophones with access to a family doctor also declined from 83% in 2019 to 74% in 2023. However, demand for English-language mental health care services remains high, with 91% of respondents in 2023 stating that receiving mental health care in English was important to them, up from 86% in 2019.

## *Autistic Linguistic Minorities*

Compared to the general population, linguistic minorities are often diagnosed with autism at a later age (Manning et al., 2011), which delays crucial early intervention services and prevents individuals from accessing much-needed supports (Ghahari et al., 2022; Malik-Soni et al., 2022). In families where a minority language is spoken at home, autism may be initially misdiagnosed as a speech delay, with language difficulties being attributed to the child’s lack of exposure to the majority language (Stahmer et al., 2019). Post-diagnosis, autistic linguistic minorities may experience service delivery disparities with their majority-language peers, such as fewer hours of direct disability services and fewer goals targeting social skills and communication overall (St. Amant et al., 2018). Combining the challenges faced by autistic individuals (Nicolaidis et al., 2015; Raymaker et al., 2017) and linguistic minorities in general (e.g., Éthier & Carrier, 2022), autistic linguistic minorities and their families face a multitude of barriers when accessing healthcare and social services. This is the case for Canadian OLMs with autism (Castonguay, 2018; Nugent, 2017; Richard et al., 2019), as well as for immigrant populations in different countries who have a family member with autism (Fong et al., 2022; Lim et al., 2021; Rivard et al., 2019; Stahmer et al., 2019).

Currently, research on healthcare and social services access for autistic linguistic minorities in Canada and their families is limited. Most of the existing work related to OLMs and autism focuses on minority Francophones and the experiences of caregivers specifically (Castonguay, 2018; Richard et al., 2019), with only one study with a very small sample centering on autistic adults (Nugent, 2017). Notably, no study has specifically examined access to healthcare and social services for minority English speakers in the context of autism, and comparative studies of healthcare access available to different groups is lacking.

In the present study, we investigated access to healthcare and social services for autistic adults and caregivers of an autistic family member through an online survey. We aimed to compare access to services between an official language minority and majority-language speakers in Canada. Three language status groups were surveyed: English speakers from Quebec, French speakers from Quebec, and English speakers from other parts of Canada. We analyzed participants’ perceived access to publicly-funded services, and further compared the perceptions of Canadian-born and foreign-born English speakers from Quebec. Then, across the three language status groups, we compared how well the language needs of participants were met in obtaining services. Finally, we took a closer look at the barriers to and supports for healthcare access for OLMs (English speakers in Quebec), including their ratings of commonly experienced barriers and facilitators, as well as the impact of the potential facilitator on their level of health literacy in French. Finally, we qualitatively analyzed respondents’ open-ended comments about barriers and supports.

Based on previous work on the access to healthcare and social services by linguistic minorities (e.g., de Moissac & Bowen, 2019), we predicted that minority-language speakers (i.e., English speakers in Quebec) would report poorer access to services and lower perception of their language needs being met compared to their counterparts who speak the majority language of their respective province. We additionally expected that Canadian-born respondents would report better access to healthcare and social services than their foreign-born counterparts due to additional access barriers commonly faced by immigrants. Finally, we hypothesized that a higher level of health literacy in French would correlate with better access to publicly-funded services in French (Falconer & Quesnel-Vallée, 2014).

<footnote n="1">In this manuscript we use terminology that reflects stakeholder preferences (Canadian Autism Spectrum Disorder Alliance [CASDA], 2020; Fecteau et al., 2024) and follows research recommendations to avoid stigmatizing and ableist language (Bottema-Beutel et al., 2021).</footnote>
# 1. Methodology

## 1.1 Participants

In the present study, 200 participants completed an online survey between April 2021 and April 2024. Participants self-identified as either autistic, a caregiver for an autistic individual, or both. Recruitment of 173 participants took place through both French- and English-speaking autism community groups and social media networks based in Quebec or elsewhere in Canada. Individuals interested in participating in the study were asked to email the researchers. To assess the eligibility of potential participants, a screening email was sent to them in the language of their original email. The screening email included the goal of the study and consisted of three questions about the their self-identification (e.g., autistic adult and/or caregiver of an autistic person, province or territory of residence, primary language), and where the participant had heard about the study. Participants who met the study criteria were assigned a unique token to protect confidentiality and emailed an invitation letter with a link to the survey. The remaining 27 participants were recruited by virtue of being the caregiver of an autistic child participating in a study in our lab.

The study received ethics approval from a university institutional review board. Participants stated whether they preferred to complete the survey in English or French. They provided written informed consent before being presented with the survey questions. The research team remained accessible by email, in case participants had any concerns or questions regarding the survey content. After the survey was completed, a researcher reviewed the responses to ensure all questions were adequately answered. Subsequently, the participant received a thank you email and online gift card.

## 1.2 Healthcare Access Survey: Autism and Official Language Minorities

The healthcare access survey designed for this study was based in part on the Official Language Minority Healthcare Questionnaire (de Moissac & Bowen, 2019), shared with us by the first author. The first section of the survey contained demographic questions, including those about language background and use. In the second section, participants were asked about their access to healthcare and social services as autistic individuals, as family members caring for someone on the spectrum, or both, followed by questions on barriers and facilitators to accessing healthcare. Emphasis was placed on services in their official language of choice. The third and final section of the survey pertained to the patient experience during healthcare appointments, and will not be discussed in this manuscript. For most participants (190) the survey was administered using LimeSurvey software (LimeSurvey GmbH, n.d.). Ten participants were administered the survey using Qualtrics (2024).

## 1.3 Survey Data Cleaning

To ensure data accuracy, we conducted data cleaning in accordance with recommended guidelines for online studies (Simone, 2019a; Simone, 2019b). Our final sample size was 165, after 35 responses were removed.

Exclusions were due to partially or fully incomplete surveys (e.g., lacking responses necessary for data analysis;<fnref n="2" /> n=26), invalid responses (e.g., numeric entries in lieu of required text, percentages exceeding 100%; n=5), respondents who did not belong to one of our final participant groups (e.g., French-speaking participants from outside of Quebec; n=2), or inconsistency in response to key questions (e.g., individuals identifying as caregivers but later indicating they are not caring for an autistic family member; n=2).

## 1.4 Data Analyses

### *1.4.1 Quantitative Data*

Statistical analyses were completed using R Statistical Software (version 4.4.0; R Core Team, 2021). See Table 1 below for a full list of questions analyzed. Data from Likert-type survey questions were treated as ordinal, as we were interested in analyzing answers on separate items rather than generating a composite score from a collection of multiple items (Boone H. & Boone D., 2012; Joshi et al., 2015). The Kruskal-Wallis test, a non-parametric equivalent of a one-way ANOVA for two or more independent groups, along with post hoc Dunn tests for pairwise comparisons, was used for ordinal variables, as well as for continuous variables, given unequal sample sizes. The Chi-square Goodness of Fit Test was used for categorical variables. An alpha level of .05 was used as the significance criterion for all statistical tests. Spearman’s rank correlation was used to examine correlation with ordinal variables.

<figure><img src="image_1.png" /><figcaption>Table 1 — *Survey Questions in Quantitative Analysis*</figcaption></figure>

### *1.4.2 Open-Ended Questions*

The thematic analysis procedure in Braun and Clarke (2006) was adapted to analyze open-ended responses to questions about barriers and supports from English speakers from Quebec, specifically, as they were the OLM of interest in this study. It is important to note that only a subset of participants provided answers to any given open-ended question.

The “coding reliability” approach described by Braun & Clarke (2022) was used to conduct our thematic analysis in three stages. In the first stage, the two team members read all open-ended responses and collaboratively created a codebook to capture common themes emerging from the responses. Themes were informed by prior research on access to healthcare services for linguistic minorities and autistic individuals and, where applicable, the same terminology was used (de Moissac & Bowen, 2019; Fong et al., 2022; Kalich et al., 2016; Lindly et al., 2019; Malik-Soni et al., 2022; Nicolaidis et al., 2015; Raymaker et al., 2017; Rivard et al., 2019; Walsh et al., 2020). Then, team members separately coded answers in accordance with the codebook. In the third stage, team members collaboratively reviewed both of their coded responses and reached a consensus on themes where there was disagreement.

## 1.5 Community Involvement

There was neurodivergent representation on the research team. Autistic collaborators advertised the survey within their circles. In addition to these communities, the current work focuses on minority language (and multilingual) speakers, who made up the research team. The project initiated from a call for proposals funded by Health Canada through their Official Languages Health Program, stemming from community needs and with an aim to improve health care access for Canadian official language minority communities.

<footnote n="2">This included missing data on the consent form, demographic information, questions about health literacy in French and English, access to publicly-funded healthcare services, or the question about language needs being met in obtaining services in the official language of choice of the participant.</footnote>
# 2. Results

## 2.1 Background Characteristics Across Language Status Groups

Table 2 displays the demographic information of participants whose data was retained and analyzed (n = 165). We considered these background characteristics key when examining healthcare access across language status groups, as prior work has identified barriers and disparities based on immigrant status (e.g., Kalich et al., 2016), income (e.g., Lazar & Davenport, 2018), level of education (e.g., Sudore et al., 2006), and rural versus urban status (e.g., Sibley & Weiner, 2011).

A significant difference was not seen between the three language status groups—English speakers from Quebec, French speakers from Quebec, and English speakers from other parts of Canada—in terms of the background characteristics listed above, which are social determinants of health. Language status groups were similar with respect to respondent type (Autistic adult, caregiver, or both) *X*<sup>*2*</sup> (2, N = 165) = 3.48, *p* = .50, being born in Canada versus foreign born *X*<sup>*2*</sup>*(2, N =*165*) = 0.64, p = .72*, income level *H*(2) = 0.373, *p* =.82, level of education *H*(2) = 0.053, *p* =.97, and community of residence *H*(2) = 0.792, *p* = .67.

<figure><img src="image_2.png" /><figcaption>Table 2 — *Characteristics of Participants by Language Status Group*<fnref n="3" /></figcaption></figure>

The three groups differed however with respect to gender identity, *X*<sup>*2*</sup> (2, N = 165) = 21.29, *p* < .001, with a higher proportion of males in the English speakers from Quebec group than the other two groups. Groups also differed significantly in age, *H*(2) = 13.39, *p* =.001, η<sup>2</sup> = .07). Post-hoc analysis using Dunn’s test indicated that French speakers from Quebec (*Mdn* = 39.5) were significantly older than English speakers from other provinces (*Mdn* = 29.5, *p* > .001), while English speakers from Quebec (*Mdn*= 31) were not significantly different from the other two groups.

## 2.2 Access to Publicly-Funded Services in Participants’ Language of Choice

Figure 1 provides responses from the two groups of participants residing in Quebec to the question: “How would you describe access to publicly-funded healthcare services in ENGLISH/FRENCH in your community?” Participants from outside of Quebec were not included since healthcare is managed provincially in Canada. Therefore, access to publicly-funded services may not be comparable across provinces for reasons other than majority/minority language status. English speakers from Quebec (official language minorities, n = 73) rated their access significantly lower than did French speakers from Quebec (majority-language speakers, n = 50) *H*(1) = 8.87, *p* < .002, η<sup>2</sup> = .04.

<figure><img src="image_3.png" /><figcaption>Figure 1 — *Perceived Access to Publicly-Funded Services in Participants’ Official Language of Choice in Their Community*</figcaption></figure>

## 2.3 Access to Services Among Canadian-Born and Foreign-Born English Speakers in
				Quebec

We investigated how place of birth (Canada vs. foreign born) influences perceived access to publicly-funded services in the official language of choice among English speakers from Quebec (n = 73), as this group was our focus in this study and had a larger sample size. Most participants from this language status group were born in Canada (n = 57), with a minority born elsewhere (n = 16). The categories of perceived access to healthcare services were recoded into a numerical scale, where 5 represented *excellent* and 1 represented *non-existent*. A Kruskal-Wallis test indicated that the median was higher among Canadian-born respondents (*Mdn =* 4 (Good), n = 57) compared to their foreign-born counterparts (*Mdn =* 3 (Fair), n = 16). The observed difference was statistically significant: *H*(1) = 4.72, *p* = .029, η<sup>2</sup> = .05

## 2.4 Language Needs Being Met When Obtaining Services

Figure 2 shows responses to the question: “How well are your language needs met in obtaining services in your official language of choice (i.e. English)?”

Results demonstrate a significant effect of language status: *H*(2) = 31.56, *p* < .001, η<sup>2</sup> = .18. A pairwise post-hoc Dunn’s test revealed that English speakers from Quebec (n = 73) demonstrated significantly lower satisfaction in their language needs being met, in comparison to both French speakers from Quebec (n = 50; *p* <.001) and English speakers from elsewhere in Canada (n = 42; *p* = .004).

<figure><img src="image_4.png" /><figcaption>Figure 2 — *How Well Are Your Language Needs Met in Obtaining Services in Your Official Language of Choice (i.e. English)?*</figcaption></figure>

## 2.5 Barriers and Supports to Healthcare Access Experienced by Autistic Official
				Language Minorities and Their Families

To analyze barriers that official language minorities—in our study, English speakers from Quebec—experience in accessing services, and supports that could facilitate the process, we compiled the responses from two questions: “Which of the following barriers to accessing services in English have you experienced?” and “Which of the following supports have been available to allow you to access services in English?” Participants were instructed to select all relevant options, commonly indicated response options are presented in Table 2. The most frequently encountered barrier (41% of respondents) reported was that of experiencing negative attitudes from staff regarding language issues. Conversely, the most frequently reported support (47% of respondents) was the availability of healthcare forms in English.

<figure><img src="image_5.png" /><figcaption>Table 3 — *Top Five Barriers and Supports to Accessing Services in English*</figcaption></figure>

## 2.6 French Health Literacy: Proficiency of English Speakers in Quebec

Since many official language minorities in Canada have some proficiency in the majority language of their province, we also examined whether this could support access to services. Specifically, we looked at whether the level of health literacy in French reported by English speakers in Quebec correlated with their perceived access to publicly-funded services in French (Figure 3). In Quebec, 69.2% of individuals whose mother tongue is English are bilingual, compared to 85% of those whose mother tongue is French in the rest of Canada (Statistics Canada, 2021b). A Spearman’s rank correlation revealed a significant positive relationship between French health literacy and perceived access to publicly-funded services in French , *r*(69) =  0.34, *p =* .004.

<figure><img src="image_6.png" /><figcaption>Figure 3 — *Correlation Between French Health Literacy and Perceived Access to Publicly-Funded Services in French Among English Speakers from Quebec*</figcaption></figure>

In optional open-ended questions, participants were asked to elaborate on the barriers and supports they experienced when seeking services. However, the response rate for these questions was low, with only 27 out of 165 participants (16.4%) providing responses. Despite this limitation, analysis of the responses from English speakers from Quebec revealed several common themes, which are bolded below, with subthemes in italics.

**Providers’ Negative Attitudes Towards Linguistic Minorities.**In keeping with the barrier of negative attitudes from staff, many English speakers from Quebec stated that they felt discriminated against for speaking English when seeking services. Some respondents commented on providers judging the lack of French proficiency among autistic individuals, with one caregiver even recounting how English services were denied to her children: “They often comment that my children have a French last name and should speak French and will not provide services for them in English.” One caregiver similarly commented that she feels as if French-speaking providers judge her accent: “they [are] always condescending, looking down on me because of my accent in both languages.” Overall, respondents expressed noticing negative attitudes among some providers related to being English-speaking.

**Services in the Desired Language.**Both autistic adults and caregivers cited the *lack of accessibility to services in the desired language* as a major access barrier. Many English speakers from Quebec commented on the limited availability of English language healthcare and social services, especially in the public system. One added that more English services were available previously, but access had diminished under the current provincial government. A caregiver from the highly Francophone Quebec City area notably described how her autistic children have not been able to access accommodations at school, as only one clinic nearby offers the required psychoeducational assessment in English and their waitlist is very long. Forms produced by the provincial government are also often only available in French. Providers’ lack of English proficiency additionally proved to be a problem when accessing services, with one caregiver commenting that it has been difficult for her English-speaking son to build a relationship with his mostly French-speaking specialized educators. In many cases, caregivers needed to be present at appointments with French-speaking providers to translate for their mostly English-speaking family member; according to one caregiver of an autistic son, this need to have a family member interpret “limits his autonomy.” Overall, in the words of an autistic adult who is a caregiver, “Accessing healthcare in English is hard.”

On the other hand, *availability of services in the desired language* facilitated access to healthcare and social services by autistic individuals and caregivers. For English speakers from Quebec, French-speaking providers speaking English or even just understanding them helped immensely. Access to English services seemed to be better in areas with more English speakers. Though counterintuitive, we had an autistic participant who is Francophone, but prefers to speak English when stressed. They reported “I live in a region where there is a concentration of Anglophones, so most doctors, psychiatrists, and interveners of all types understand English at the minimum.” When English-speaking providers were not available, family members stepping in to interpret between the provider and individual could help facilitate access. Alternatively, one respondent shared that, when they have needed to seek services at a French hospital, they had been provided with a navigator or companion to help.

<footnote n="3">Two respondents were from Alberta, eight from British Colombia, one from Manitoba, one from New Brunswick, two from Nova Scotia, one from Nunavut, and twenty-seven from Ontario.</footnote>
# 3. Discussion

This study contributes to the limited research examining access to healthcare and social services for those at the intersection of being autistic and belonging to a linguistic minority. The data collected from English official language minorities in Quebec is particularly significant given legislative efforts in Quebec that could potentially limit access to healthcare and social services in English, in the name of protecting French (see Butler et al., 2021 for a discussion of the impacts of such measures on social and health rights).

We analyzed data from a survey involving 165 participants from one of three language status groups: English speakers from Quebec, French speakers from Quebec, and English speakers from other parts of Canada. The composition of the groups was similar with respect to respondent type, income level, place of birth, education, and community of residence. However, our target group, English speakers from Quebec, had a higher proportion of males than the other two groups. In prior work, gender identity has been found to impact healthcare access. For example, Ngwakongnwi et al. (2012) found that Anglophone and Francophone minority women are more likely to experience language barriers than men and, thus, are less likely to have a regular doctor. It is conceivable that having a higher proportion of males in our sample of English speakers from Quebec could bias our results to show better healthcare access for this group. However, our findings show the opposite trend, providing a stringent test of whether healthcare access is impacted by minority-language status.

We hypothesized that minority-language speakers (English speakers from Quebec) would report poorer perceived access to services than their French-speaking majority-language counterparts, in accordance with earlier findings (e.g., de Moissac & Bowen, 2019; Falconer & Quesnel-Vallée, 2014; Nugent, 2017). We added an additional dimension of publicly-funded services, since Quebec has a public healthcare system (Breton et al., 2009). Consistent with previous research, the English speakers from Quebec in our study reported poorer access to publicly-funded healthcare services than the majority-language French speakers from Quebec.

In addition, we hypothesized that due to additional barriers, immigrant respondents who are English speakers may report worse access to services than their Canadian-born counterparts. This was confirmed by our data: English speakers born outside of Canada reported poorer access to healthcare services than their Canadian-born counterparts. These results are consistent with multiple prior reports of immigrant populations having poorer access to healthcare than non-immigrants (Casale et al., 2023; Kalich et al., 2016, Lebrun & Dubay, 2010; Ye et al., 2012). This finding could be explained by additional barriers faced by immigrants, such as cultural differences and reduced familiarity with the services available (Casale et al., 2023).

Compared to French speakers from Quebec and English speakers from other parts of Canada, English speakers in Quebec also reported significantly lower satisfaction with their language needs being met when obtaining services. This finding is consistent with previous work on the access of linguistic minorities to healthcare services, where language barriers are reported to contribute to misdiagnosis, delays in treatment, and difficulties communicating with providers (de Moissac & Bowen, 2019; Lim et al., 2021). An independent survey of the general population of English-speaking Quebecers found that fewer than one third (23% in 2019 and 27% in 2023) stated that they were totally satisfied with the availability of health and social services in English (Community Health and Social Services Network [CHSSN], 2023, question Q23). This can be used as a benchmark to interpret our data collected between 2019 and 2023, which suggests that autistic English speakers in Quebec experience even greater challenges, with only 18% (or 13 out of 73 respondents in Figure 2) reporting full satisfaction with their language needs being met when obtaining services.

Notably, the proportion of English speakers outside Quebec who felt their language needs were fully met was unexpectedly low. Outside Quebec, the part of the question about language needs may have been less relevant for majority-language speakers and responses may reflect the broader challenges of accessing autism-specific services, as this was a summary question that appeared at the end of the survey. Across Canada, autism services are often scarce and difficult to access, with systemic issues such as long wait times, provider shortages, and regional disparities playing a significant role (Gallant et al., 2024; Penner et al., 2018).

Lastly, focusing specifically on English speakers in Quebec, we analysed responses from autistic individuals or caregivers about barriers and supports to accessing healthcare and social services. Similar to previous work on Quebec English speakers (CHSSN, 2023; Nash, 2019), French speakers in other Canadian provinces (Castonguay, 2018; de Moissac & Bowen, 2019; Drolet et al., 2014), and linguistic minorities more broadly (Fong et al., 2022; Lim et al., 2021; Stahmer et al., 2019), our participants report negative attitudes from providers, longer wait times, travelling distances to attend appointments in their dominant language, and the lack of bilingual healthcare providers as the main barriers to accessing services. Caregivers also reported translating for their family member during appointments with French-speaking practitioners, which reduces the autonomy and right to confidentiality of the individual—issues also reported by Francophones outside of Quebec (de Moissac & Bowen, 2019). Interestingly, although the shortage of interpreters has previously been cited as a barrier (de Moissac & Bowen, 2019; Xhaferri, 2020), no mention was made by our participants. The negative attitudes of providers related to offering services in English instead emerged as a major barrier. This may reflect the impact of ongoing political tensions in Quebec regarding the perceived access to services of English speakers. Although negative attitudes were also reported as a barrier by minority Francophones and immigrant populations, for these populations limited availability of minority-language services was a greater barrier (Castonguay, 2018; de Moissac & Bowen, 2019 ; Fong et al., 2022).

As for supports, the English speakers from Quebec in our study overwhelmingly stated that the availability of services in English and information about these services facilitated their access to healthcare. The most common support was healthcare forms in English, which is particularly important given the often long, complex forms that must be filled out to access services (Castonguay, 2018; Rivard et al., 2019). This is consistent with previous work that has highlighted how difficulties filling out forms in a non-preferred language can hinder access (de Moissac & Bowen, 2019; Lim et al., 2021). Similarly to previous work (de Moissac & Bowen, 2019; Fong et al., 2022), availability of services in the minority language—mainly through providers proficient in the language, but also family members as interpreters or navigators to help receive services— enhanced perceived access to services.

Moving away from services in the preferred language, we also examined how proficiency in the majority language could impact healthcare access. We found that, for English speakers from Quebec, their self-reported level of health literacy in French positively correlated with their perceived access to publicly-funded services in French. This result aligns with previous work on English speakers in Quebec and demonstrates that even some proficiency in the majority language is associated with improved healthcare access in the majority language (Falconer & Quesnel-Vallée, 2014; Ngwakongnwi et al., 2012). Immigrant caregivers of autistic individuals have also emphasized the importance of learning the majority language to communicate with providers and advocate for their loved ones (Fong et al., 2022; Stahmer et al., 2019). These findings highlight that access for linguistic minorities can be highly limited without proficiency in the majority language.

While the barriers and supports identified in this study align with those experienced by linguistic minorities more broadly (e.g., de Moissac & Bowen, 2019), as well as autistic individuals from official language minorities (e.g., Castonguay, 2018) and immigrant families (e.g., Fong et al., 2022; Stahmer et al., 2019), it is important to recognize the distinctions between these groups. For instance, accessing services in the two official languages of Canada, English or French, is generally easier than in non-official languages (e.g., Punjabi). Additionally, individuals from immigrant backgrounds, who often speak non-official languages, may require more support to navigate healthcare systems in a new province or country. Therefore, while some supports may be comparable across linguistic minority groups, the specific needs and solutions for each group should be carefully considered.

Furthermore, while our study did not directly collect data on this matter, previous research highlights that—beyond language barriers—limited knowledge about autism among healthcare providers, coupled with autism-related stigma, significantly impedes access to adequate care (Ghahari et al., 2022; Lappé et al., 2018; Locke et al., 2020; Malik-Soni et al., 2022; Mason et al., 2019; Nicolaidis et al., 2015; Raymaker et al., 2017; Walsh et al., 2020).

## 3.1 Limitations

Survey data from additional comparison groups using the same survey questions will be important for future work. Specifically, data on the perceived healthcare access of the general population of English language speakers in Quebec (such as presented in the report by the Community Health and Social Services Network, 2023) sheds light on the potential increased barriers faced by those with an intersectional identity of autism as well. Likewise, data from Francophone minority-language speakers in other provinces in Canada, with and without autism, would elucidate the extent to which perceived barriers are shared among OLM groups.

Although our total sample of 165 participants was larger than many others in the literature, it was still modest with respect to comparisons between language status groups and, as such, the results presented here are preliminary. For comparisons between specific subgroups of participants (e.g., Canadian versus foreign-born English speakers in Quebec), our sample size was quite small, limiting the ability to draw robust conclusions. Furthermore, the findings from this online survey with mainly Likert scale or short response questions was limited in capturing personal experiences, and should be complemented by other work using rich qualitative methods.
# Conclusion

This first data from English-speaking official language minorities in Quebec, who are autistic and/ or have an autistic family member, demonstrates that they report poorer access to publicly-funded services than majority-language speakers in the same province. They also report lower satisfaction with their language needs being met relative to majority-language speakers in the same province (French speakers in Quebec) or other provinces (English speakers from elsewhere in Canada). These results add to existing findings of reduced healthcare access among official language minorities in Canada (Casale et al., 2023; de Moissac & Bowen, 2019; Falconer & Quesnel-Vallée, 2014; Bouchard & Desmeules, 2013; Ngwakongnwi et al., 2012), and barriers faced by autistic individuals in accessing healthcare (Nicolaidis et al., 2015; Raymaker et al., 2017). Compared with independent survey data obtained by the CHSSN (2023), our analysis suggests that English speakers in Quebec at the intersection of autism and language minority status may face even greater challenges in accessing health and social services than English speakers in Quebec from the general population.

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