A qualitative study of the service experiences of women with autism spectrum disorder

Abstract

It is recognized that the experiences of women with autism spectrum disorder are often underrepresented in the literature. In this study, 20 women with autism spectrum disorder participated in five focus groups with discussions centered on their service use, unmet service needs, and barriers to care. Overall, women emphasized high unmet service needs, particularly with respect to mental health concerns, residential supports, and vocational and employment services. Participants also perceived many service providers as disregarding or misunderstanding women’s service needs. Findings of the current exploratory study are discussed in relation to areas of future research required to ensure effective care for this understudied population.

Keywords

adults autism spectrum disorder females masking qualitative research service use

Recent international policies prioritize service provision for adults with autism spectrum disorder (ASD; Ministry of Community and Social Services Partnership Table Housing Study Group, 2013; National Audit Office, 2009; Select Committee on Developmental Services, 2014; US Department of Health and Human Services Interagency Autism Coordinating Committee, 2012). The literature to date, however, is largely focused on an understanding of the service needs of the young male profile of ASD (Edwards et al., 2012; Watkins et al., 2014). While past research in the broader intellectual/developmental disability (IDD) literature suggests women are faced with both sex/gender¹ and disability-related barriers to care (Boeltzig et al., 2009; Cobigo et al., 2013; Taggart et al., 2011), the service experiences of women with ASD remain largely unknown.

The prevailing male focus in the ASD literature is commonly attributed to the predominance of males diagnosed with the disorder (Holtmann et al., 2007; Watkins et al., 2014). The male-to-female ratio in ASD is typically approximated at 4 to 1 (Fombonne, 2009) although ratios differ across individual studies and selected sample characteristics. Research has increasingly explored the possibility of sex/gender differences in the manifestation of clinical symptoms that may account, in part, for male to female prevalence invariances. While results to date vary considerably, systematic reviews suggest females with ASD may have fewer stereotyped and repetitive behaviors and/or restricted interests that are more confirmative to social norms than boys (Kirkovski et al., 2013; Kreiser and White, 2014; Van Wijngaarden-Cremers et al., 2014). Clinical observations and a handful of recent studies further highlight that some girls with ASD may develop strategies to cope or adapt to certain situations (e.g. using social imitation), subsequently camouflaging or masking their symptoms (Baldwin and Costley, 2016; Bargiela et al., 2016; Dean et al., 2016; Lai et al., 2016; Rynkiewicz et al., 2016; Tierney et al., 2016).

Perhaps related to sex/gender differences in clinical presentations, many girls with ASD receive delayed or misdiagnoses (Begeer et al., 2013; Lai et al., 2011; Rutherford et al., 2016). Beyond diagnostic services, however, large-scale quantitative studies often do not find significant sex-/gender-specific patterns of service use among individuals with ASD (e.g. Bromley et al., 2004; Ruble and McGrew, 2007; Shattuck et al., 2011; Zablotsky et al., 2015). Research on adults’ service experiences, however, is more limited when compared to that of youth (Shattuck et al., 2012). Overall, adults with ASD appear to face restricted resources and pervasive barriers to care (Bruder et al., 2012; Nicolaidis et al., 2013; Raymaker et al., 2016; Shattuck et al., 2011; Turcotte et al., 2016). Shattuck et al. (2011) examined the rates of parent-reported post-high school service use among young adults with ASD. A significant decline in service receipt was reported after high school, with 39.1% of young adults receiving no medical, mental health, speech therapy, communication, or case management services; sex/gender was not a significant predictor of lack of service receipt.

A lack of significant sex/gender differences in overall service patterns in the research to date may reflect more nuanced sex/gender barriers to care, which may remain undetected in large administrative datasets. The preliminary research focused on sex/gender differences does in fact suggest that women with ASD, and particularly those without intellectual disability (ID), may experience unmet needs that differ from men (Baldwin and Costley, 2016; Taylor and Mailick, 2014; Taylor et al., 2015). For instance, women with ASD without ID are considerably less likely to maintain employment and/or attend post-secondary education as compared to men (Taylor et al., 2015). Additionally, women with ASD without ID have described challenges in relation to obtaining assessment services due to professionals’ preconceived ideas concerning ASD symptom presentation (Bargiela et al., 2016). These unhelpful professional stereotypes may persist to other areas of care for women with ASD and require further in-depth study.

In this study, we build on the limited extant research using focus groups to qualitatively describe the service experiences of women with ASD. Focus groups were chosen due to their extensive use in health service research to examine individuals’ service experiences (Kitzinger, 1995) and their identification as a highly preferred method of research participation among individuals with ASD (Haas et al., 2016). The current exploratory study aimed to address the following broad research questions.

How do women with ASD perceive their service and support experiences?

What, if any, are the unmet service needs of women with ASD?

What, if any, barriers to care do women with ASD identify?

Methods

Participants

A total of 20 women with ASD participated in five focus groups. To be eligible for the study, participants needed to (1) identify as a natal female; (2) be of 18 years of age or older; (3) have received an ASD diagnosis from a licensed health professional (e.g. physician, psychologist, or nurse practitioner permitted by their affiliated governing College to practice and diagnose in Canada); and (4) be able to participate in one of the predetermined focus group dates. With an exploratory focus on obtaining varied perspectives, no exclusion criteria were set with regard to cognitive ability and/or comorbid diagnoses.

Individual demographics are not presented to protect participant confidentiality. Participants ranged in age from 19 to 69 years (M = 35.45; standard deviation (SD) = 12.26). The age at which participants were diagnosed with ASD ranged from 2 to 65 years (M = 26.25; SD = 17.24 years). No participant reported a diagnosis of ID. The majority of participants identified as White (90%). Approximately, 60% of participants were single (40% were married or in relationships). More than half of participants (55%) lived independently or with their spouses or partners (i.e. in own house or apartment), while 45% lived with their family of origin (i.e. with parents). Participants reported their highest achieved education levels as follows: 15% obtained a postgraduate degree, 25% graduated university, 40% graduated college (i.e. a post-secondary career or trade-oriented certificate or diploma program), and 20% graduated high school. More than half of the participants (55%) were employed or attending school full time, with the remainder unemployed and/or not attending school (30%), employed or attending school part time (10%) or retired (5%).

Procedure

Ethics approval was obtained from the university. Convenience and snowball sampling methods were used to recruit participants from across the Greater Toronto Area. Participants were recruited from postings on ASD support organizations’ websites and through email lists associated with these organizations. Interested participants were asked to contact the researcher via telephone or email. Once contacted, the researcher discussed the purpose of the study, provided a brief orientation to focus group methodology, and confirmed that the individual met the study inclusion criteria.

Focus groups ranged in size from two to six participants. After informed consent was obtained, participants were asked to complete a brief demographic questionnaires for descriptive purposes. According to suggested focus group procedure (Krueger, 1994), a topic guide was created in advance to ensure all relevant topics were covered. Accuracy checks, a modified version of member checking (Denzin and Lincoln, 1994; Kidd and Parshall, 2000), were conducted at the conclusion of each focus group by summarizing the key questions and major ideas that emerged from the discussion and by asking participants if the summary was adequate, and/or if any important issues had been omitted. The sessions were audio-recorded using a digital voice recorder and transcribed verbatim. The focus groups ranged in length from 82 to 135 minutes (M = 114.40; SD = 21.13).

Data analysis

The software package NVivo 11 was used to allow systematic coding and data retrieval. An inductive, semantic-level analysis was conducted as per the analytic phases outlined by Braun and Clarke (2006, 2013). This approach was chosen due to its recommended applicability with focus group data (Kitzinger, 1995; Krueger, 1994), in addition to its exploratory nature that allows for the examination of broad research questions by assimilating and accommodating new themes. First, transcripts were read for initial impressions. Next, a set of initial codes was generated based on additional close readings of the transcripts. These codes were then organized into preliminary candidate themes. The integrity of the preliminary themes was assessed relative to coded extracts and the larger data set in full. Patton’s (1990) criteria for establishing themes by assessing internal homogeneity (i.e. collated data within each theme falls together in a meaningful way) and external heterogeneity (i.e. clear and identifiable differences are evident across individual themes) were used. Final themes were refined as needed and exemplary extracts were selected. The first author took the lead in analysis but discussed emergent themes with the research team until final conceptualizations were achieved. In accordance with recommended focus group analysis guidelines (Kitzinger, 1995), qualitative information was not transformed into quantitative data as many nonverbal interactions may be missed in a group setting.

Results

Themes and subthemes related to participants’ service experiences are presented in Table 1. One additional theme emerged that focused exclusively on participants’ feelings regarding obtaining their ASD diagnosis later in life; however, it is not included here as it is out of the scope of this study. Three primary themes are outlined below: (1) masking service needs; (2) (mis)communication with service providers; and (3) accessing appropriate services: “a constant struggle.” Within the results below, primary themes are identified as subheadings and subthemes are identified in italics. Data extracts have been edited minimally to aid readability andcomprehension; an ellipsis indicates text not relevant to the analysis has been removed. All data havebeen anonymized so that identifying information was changed or removed. Participant numbers are used to identify direct quotations.

Table 1.

Thematic analysis.

Theme	Subtheme
Masking service needs	Not looking the part Seeing is believing Hidden hurt of maintaining the mask Unworthy of services
(Mis)Communication with service providers	Not speaking the same service language (In)Experienced experts Feeling heard
Accessing appropriate services: “a constant struggle”	Not fitting the bill “A broken system” Getting there is half the battle Square peg in a round hole Looking outside the box for social support

Masking service needs

Most participants identified distinct and subtler behavioral manifestations of ASD as compared to the typically overt social challenges and/or disruptive behaviors that men with ASD may exhibit. A common thread across participants’ experiences related to service providers dismissing their service needs largely because they were seen as not looking the part. One participant highlighted the disconnect between her own presentation and the preconceptions of ASD that many service providers hold in the following conversation she had with her psychiatrist: “He would point out things like, ‘Well, you’re making eye contact with me, so you can’t have autism’ and ‘You’ve been married three times so you can’t have autism’” (P9).

Most participants described their ability to mask their ASD symptoms (e.g. engage in social observation and mimicry) to varying extents, which they described as helpful in many social situations:

Yeah, I’m totally aware when someone sees me as weird. (P17)

Exactly! It’s like your spidey sense is tingling. It’s like, uh-oh, that person has received weirdness now I have to amend my presentation so that I can pass better. (P16)

Masking skills were viewed as positive coping mechanisms participants developed as youth, though at times, they were also described to negatively impact interactions with service providers. Many described service providers’ tendency to minimize their service needs due to their masking abilities; service providers insisted on a seeing is believing mentality, which conflicted with participants’ often incongruent presentation: “I can turn on my normal long enough to sit through a half hour appointment. So, I’m articulating to my doctor that I’m having these issues but to them it doesn’t look like it, so there is that disconnect” (P11). Many participants also described fluctuating service needs. That is, they described days when they are able to mask their difficulties and “turn on normal” to perform their day-to-day responsibilities without issue, as compared to other days when they require more support, mostly due to anxiety and other mental health concerns. Participants spoke of service providers’ inability to fully comprehend these varying needs and their tendency to perceive women as malingering or exaggerating service needs:

So whatever you’re most capable is, they assume that’s how you are all the time … So, if you can do that, then you can do this, this, and this all the time. But I can’t even pick up the phone to call you on those hard days. (P2)

Numerous participants described a sense of hidden hurt of maintaining the mask due to the strong emotional and physical consequences of the energy expended while exhibiting masking behaviors. Many women described their ability to “pass” on the outside while simultaneously experiencing an internal sense of exhaustion:

I’m not one to make a scene. I don’t even want to be in a scene! I try to always be behind the scene! So to the outside observer I’m sure I look passable - no one is going to expect that inside I’m driving myself crazy. (P15)

Some participants also described reaching a point of exhaustion when they “break down” (e.g. experience fits of yelling and crying) and are unable to mask their difficulties any longer. The ostensibly unobservable precursors to these “breakdowns” were perceived to further perplex service providers.

Compounding their experiences of masking service needs, many participants expressed concerns around feeling unworthy of services, and identified their own reluctance to seek help in addition to feeling stigmatized while accessing services. Participants often described feeling belied by their seemingly unaffected presentation and recalled associated feelings of shame for seeking help. For example, one woman described feeling unworthy of testing accommodations in university for her sensory sensitivities:

When I was studying, I didn’t think I was deserving of special treatment. I thought I should be able to handle it like everyone else. So what did I do? When I wrote my exams, I filed myself in with … 400 other people under blinking and blonking florescent lights. (P4)

Others attributed their overall reluctance to access services to past negative experiences. One woman described a perceived double standard attached specifically to women with ASD:

I’ve noticed regarding the guys with Asperger’s that I know … people just dismiss them as, “Oh, he’s being his usual quirky self.” But if I impose the same request and accommodations and whatnot, because I look too high functioning or whatever, I’m too high maintenance, or hysterical even. (P12)

(Mis)communication with service providers

Several women identified challenges communicating with various service providers. Participants reported instances of not speaking the same service need language and associated challenges communicating their needs. For instance, many women acknowledged difficulties related to processing speed limitations amid service providers’ time restraints, particularly with medical professionals. A participant described these difficulties with respect to communicating with her family doctor: “She’s always rushing me … Sometimes I also don’t understand the way she phrases things but by the time I figure out enough to ask her to clarify, she has already moved on” (P3).

Miscommunications with service providers regarding sensory sensitivities and pain perception were also prominent. Participants’ sensory sensitivities and overstimulation while seeking services often related to the lights, sounds, smells, and overcrowding of many providers’ places of business. Many women described their difficulty communicating these sensory issues to service providers:

… About dentists, I cannot take the feeling of that bib across me … I can’t seem to explain properly to them, in the moment, that I would rather have a cavity drilled than have this thing up against my neck the whole time. They say, “Oh, it will dribble on your clothes”, but I don’t care and they just don’t get it! (P6)

Several participants also identified having a high pain tolerance, while others described challenges in communicating their experience of physical pain to medical professionals due to a seemingly blunted physical presentation. One participant, for example, presented to the emergency department with kidney stones. Despite the pain being so unbearable she thought she “was going to die,” staff were viewed as less responsive to her because she “was not crying or screaming” (P10). Some participants also attributed their high pain tolerance and associated difficulties communicating their pain experiences with their ongoingsensory issues. That is, some participants identified a “neurotypical obsession with pain” (P18) on the part of service providers that seemed to dominate the focus of the assessment and treatment provision. This emphasis on pain was viewed as overshadowing participants’ constant sense of sensory overstimulation, which for many, was more problematic than pain, per se.

Participants often attributed their communication difficulties to their interactions with (in)experienced experts. Many women identified service providers’ lack of experience working with individuals with ASD and, in turn, their lack of awareness of the global impact of ASD: “My doctor doesn’t understand why I mention that I have Asperger’s … He just probably thinks that it means I’m socially awkward but doesn’t get that it impacts other things” (P1). A handful of participants also described service providers’ positive communication styles, usually those with prior experience working with individuals with ASD:

I just had a really good experience yesterday with my dentist … I told him about this diagnosis of autism and he said that he had worked for years at [a hospital] working with kids with autism. As soon as I said that, I felt like he reached into his communication toolbox or something that he’s learned and all of a sudden he was talking to me differently. (P4)

Relatedly, participants described the value that they placed on service providers’ willingness to listen and the appreciation they acknowledged when feeling heard: “For my daughter’s birth, I worked with a midwife, which was a really positive experience because they took a lot more time with me and they were a lot more open to discussing Asperger’s in relation to my pregnancy” (P8).

Accessing appropriate services: “a constant struggle”

The large majority of participants identified significant challenges in accessing the services they needed. A number of participants identified not fitting the bill due to exclusionary service eligibility requirements. Many services were noted to be unavailable as participants aged out of the child system. Age was a particularly significant barrier for those participants who received their ASD diagnosis as adults: “I got diagnosed when I was 31 so that meant that I was cut off from most of the funding sources that I could apply to before I even knew I needed them” (P11). Participants also frequently found themselves ineligible to receive supports based on diagnostic exclusionary criteria, which was especially pronounced with respect to residential supports. Several participants who lived with family, in addition to those living independently, voiced dissatisfaction with their current living arrangements and their inability to access funding for residential supports: “I feel like all of whatever housing supports are out there are for people who have … Down Syndrome … but I would also really like to live on my own with my own space” (P11).

Many women acknowledged a broken system in describing their difficulties accessing services due to the reactive, as compared to preventative, nature of many services. For example, one woman described her difficulty accessing housing supports:

A couple of years ago, I was in a housing crisis and a mental health crisis, I was homeless at the time, and I was told I would have to wait three years for supportive housing. I recently contacted them again … and I found out because I’m no longer homeless, my wait is now seven years. (P7)

Several participants also described their inabilityto access affordable mental health supports due to their limited financial means and the unavailability offunded supports:

… When it comes to these sorts of things, psychological things, you’re on your own financially. It’s not going to be covered for you unless you show up in crisis. It’s like a thrill, it’s treated as a thrill rather than a necessity, but it helps me to survive. (P14)

Further service accessibility challenges were identified related to participants finding their way to appropriate service, that is, getting there is half the battle. Participants frequently commented on a lack of transportation as a barrier to service use. Many women explained that they were unable to use public transportation independently for fear of getting lost. Others described sensory sensitivities, which made public transportation a highly inaccessible mode of transportation. Several women spoke about their difficulties locating appropriate services and ongoing concerns regarding service applications and the associated paperwork within differing service systems. These difficulties were often exacerbated by siloed service systems and a lack of integrated care:

It’s hugely challenging for me to face the paperwork and just trying to keep track of the bazillion different people who aren’t talking to each other … I have given up at times just because I’ve had to conserve energy for life. I tell myself that when I’m feeling better in a month, a year, whenever, I’ll get to it because it’s just too much without having … a case manager or something to help you with all that stuff. (P20)

Even when able to successfully access services, many participants described being a square peg in a round hole as they highlighted a need for individually tailored supports. In particular, participants described experiences with unaccommodating mental health professionals who appeared unable or unwilling to shift their intervention approaches to meet the needs of women with ASD. In individual therapy, participants often described difficulties with emotion identification and their therapists’ insensitivity or unawareness of these difficulties. Other participants described similarly unsatisfactory experiences of attending group therapy programs:

They hand over that green book “Mind Over Mood” and just sort of insist that we go through the motions that every Tom, Dick and Harry go through. I kept insisting … I’m different and I don’t really need these exercises, but it was always, “Just do this exercise.” (P14)

Accessing appropriately tailored post-secondary educational and vocational supports was equally challenging for many women. While some were able to access effective academic accommodations (e.g. alternative scheduling of examinations, permission for audio-recording of lectures) at the undergraduate university or college level, most women who attended postgraduate programs identified a lack of appropriate services and supports. By the same token, many women identified being “overqualified” for many vocational and employment supports:

I had a really hard time starting into my career so I applied to [employment support program] that has an autism program. But because my level of education was so high and I was in such a special field, they didn’t think they could help me… (P7)

Several participants also discussed how vocational and employment programs did not highlight their true abilities: “I have nothing against minimum wage work, but it doesn’t reflect my own strengths” (P10). Many women indicated employment supports were usually tailored to assist with resume and interview supports and identified an unmet need with respect to on-site employment or vocational maintenance supports. Specifically, many women described the difficulties they encountered maintaining steady employment due to their unpredictable mental health needs.

In the absence of effective formal services, many women highlighted looking outside the box for social support, and described positive experiences with in-person and online self-advocacy and support groups. Several women described the support they received through social media (e.g. Twitter, Facebook), which often acted as their only source of interaction with other women with ASD. Identified benefits of online supports included convenience and accessibility: “The nice thing about being online is the fact that it’s international. If I’m having a crisis at 2 a.m., there’s somebody online I can talk to who gets it” (P19).

Discussion

This qualitative study is one of the first to provide insight into the service experiences of women with ASD. Overall, a shared perception among participants emphasized that their service needs tend to be misunderstood. Specifically, participants reported that masking skills contributed to professionals’ dismissal of their service needs. Largely consistent with past ASD and IDD mixed sex/gender research (e.g. Turcotte et al., 2016; Weiss and Lunsky, 2010), women in this study also described a profile of high unmet service needs, particularly with respect to mental health concerns, residential supports, and employment and vocational services.

Many participants felt their service needs were eclipsed by their cognitive abilities, educational achievements, and veiled social and communication challenges. Baldwin and Costley (2016) proposed that while women with ASD without ID do not demonstrate the same adaptive behavior deficits as those of individuals with ID, they may experience similar challenges in everyday life. Indeed, many participants in this study described challenges accessing required supports and services similar to individuals with mild or borderline ID due to a perceived “cloak of competence” (Egerton et al., 1984). The minimization of participants’ service needs in this study can also be likened to the narrative of many women with chronic illnesses and the effortful work that is needed to make their symptoms and associated service needs socially visible when consulting service providers (Werner and Malterud, 2003). Recent work by Lai et al. (2016) on quantifying the abilities of individuals with ASD to camouflage their social communication difficulties highlights the incongruence some women with ASD may experience with respect to their internal perceived abilities as compared to their outward behavioral presentation and appearance. On average, women had higher camouflage scores than men (Lai et al., 2016); future research focused on improving professionals’ awareness of these sex/gender differences may assist in “unmasking” barriers to appropriate service provision for women with ASD.

In this study, unmet mental health needs were a prominent concern for many women with ASD. Participants’ concerns about the availability and effectiveness of mental health supports are echoed in the ASD and broader IDD literature (e.g. Griffith et al., 2012; Lunsky et al., 2007). Many participants described fluctuating anxiety and depression and their inability to access preventative services in a crisis-driven service system; caregivers of individuals with IDD have voiced similar concerns in past research (Burton-Smith et al., 2009; Weiss and Lunsky, 2010). Perhaps more specific to women with ASD, participants in this study also described mental health needs related to the energy required to manage or mask their social communication difficulties and the associated negative repercussions on their psychological wellbeing. Overall, few studies to date have comprehensively studied masking strategies of women with ASD (Bargiela et al., 2016; Dean et al., 2016; Lai et al., 2016; Rynkiewicz et al., 2016; Tierney et al., 2016). A greater understanding of these challenges will allow clinicians to better tailor appropriate services and supports.

Similar to this study, past research has highlighted the challenges individuals with ASD experience accessing effective services in the adult service sector (Nicolaidis et al., 2013; Raymaker et al., 2016). Many participants described complex needs necessitating a range of services across sectors; however, case management services were often unavailable. Case management is considered crucial for coordinating health services for individuals with IDD requiring multidisciplinary expertise (Walsh, Kastner and Criscione, 1997); however, many adults with ASD without ID are ineligible for the service through the adult service sector (Shattuck et al., 2011). Similarly, women with ASD without ID in this study were unable to access residential supports due to diagnostic exclusionary criteria. Past research has shown that the proportion of young adults with ASD without ID reported to have ever lived independently is significantly lower than those with ID (Anderson et al., 2014).

Post-secondary educational and employment supports were an additional area of concern for many women with ASD in this study. Participants indicated histories of “mal-employment” (i.e. the quality of their employment was inferior relative to their potential productive abilities; Feldman, 1996) and identified negative experiences with employment supports predominantly focused on finding and applying for jobs (e.g. resume and interview support), rather than job maintenance skills (e.g. on-site coaching, supports to cope with job-related stress). These sentiments are in accordance with the findings of Sung et al. (2015), where job search assistance services were shown to be more beneficial for men with ASD than women. Speaking further to potential sex-/gender-specific support needs, participants described negative implications of their mental health needs impacting their employment. In the general population, women are reported to experience more emotional exhaustion and related job-burnout than men (Purvanova and Muros, 2010). Effective employment supports have been identified as a priority area for future ASD research (Pellicano et al., 2014) and methods of properly supporting women with ASD need to be identified.

Service providers’ knowledge, communication skills, and attitudes were frequently cited as barriers to effective care. Research has substantiated a need for increased clinical training by psychology students, medical students, and psychiatry residents in Canada to provide effective care to individuals with IDD (Burge et al., 2008; Lunsky and Bradley, 2001; Weiss et al., 2010). Several participants described difficulties communicating their pain experiences to medical professionals. While the evidence for atypical pain thresholds of individuals with ASD is mixed (Duerden et al., 2015; Moore, 2015), challenges with body awareness may complicate how some individuals with ASD are able to identify and communicate their pain experiences to healthcare providers (Nicolaidis et al., 2015). Participants also identified feeling “rushed” while interacting with service providers, particularly medical doctors. Warfield et al. (2015) identified several themes related to the financial disincentives of providing care for adults with ASD for physicians, including the extra time it may take to care for a patient with ASD in office. It has been suggested that systemic reforms are needed to incentivize providing care for adults with ASD who may present with complex needs (McDougle, 2013; Warfield et al., 2015).

To summarize, participants in this study described diverse unmet service needs and barriers to care in the adult service sector. It is important for future research to discern if results from the current exploratory study are unique to women or are shared more generally among adults with ASD, particularly those without ID. Perhaps more specific to women, participants in this study also described support needs associated with mental health repercussions of masking or compensating for their social communication difficulties. Although such camouflaging behavior may occur across sexes/genders, it appears to be more likely in females (Lai et al., 2016). Direct comparisons of how masking behaviors may differentially impact the service experiences of men and women with ASD, and further disentangling of the mechanisms that drive these processes, remain areas for future study.

The current exploratory study has several limitations. Our sample was not representative of all women with ASD. Most participants were diagnosed with ASD in adulthood, had some post-secondary training or education, identified as White, and none reported being diagnosed with ID. Additionally, participants were recruited through community services and ASD advocacy agencies and largely through online methods. While it is difficult to predict how these characteristics shaped the results of this study, it is possible that individuals who self-referred were more dissatisfied, connected, or empowered to communicate their experiences than the typical woman with ASD. Finally, we were reliant on women’s self-report of ASD diagnoses. This is similar to past research (Baldwin and Costley, 2016); however, future research would benefit from the inclusion of objective ASD symptomatology measures and/or verification of ASD diagnoses.

Future research

The following suggestions are offered to guide future research and improve service provision for women with ASD.

It is important for future research to better understand how results of this study generalize to women with ASD across a range of abilities and of varied demographics.

Similarly, a better understanding of the intersection of sex/gender, disability, and service barriers may necessitate future studies inclusive of both men and women with ASD, typically developing individuals, as well as those with other special healthcare needs.

Specific attention to sex/gender differences in individuals’ abilities to mask their social communication deficits will provide important information for frontline clinicians.

The development of systems for personalizing services and supports to the needs of individual service users with IDD, commonly referred to as person-centered services, has become fundamental to current health and social care policies in Canada and elsewhere (e.g. Martin et al., 2012; Ministry of Community and Social Services, 2013; Scottish Executive, 2000). Given the individuality of women with ASD and their differing support needs and the context with which they are often identified, future research is needed to determine effective person-centered approaches to services tailored to the individual, as opposed to the current model of existing services that women need to “fit into.”

Conclusion

This study demonstrated that increased awareness by researchers and service providers of the range of service needs of women with ASD is clearly needed. Ultimately, research concerning the female ASD phenotype is in its infancy (Lai et al., 2015), and as the field continues to develop, further work is needed to identify pathways to successful care for women with ASD.

Supplemental Material

AUT702561_Lay_Abstract – Supplemental material for A qualitative study of the service experiences of women with autism spectrum disorder

Supplemental material, AUT702561_Lay_Abstract for A qualitative study of the service experiences of women with autism spectrum disorder by Ami Tint and Jonathan A Weiss in Autism

Footnotes

Acknowledgements

The authors thank the participants for sharing their time and experiences. They would also like to thank Dr Karen Fergus for her assistance with the qualitative analysis.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Ami Tint was supported by Ontario Women’s Health and Autism Scholars Awards. Dr Weiss is supported by the Chair in Autism Spectrum Disorders Treatment and Care Research (#RN284208; Canadian Institutes of Health Research in partnership with NeuroDevNet, Sinneave Family Foundation, CASDA, Autism Speaks Canada and Health Canada).

Notes

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